Centre for Internet and Society

The Creation of a Network for the Global South - A Literature Review

tanvi — 2016-02-04T13:13:20Z

I. Introduction

The organization of societies and states is predicated on the development of Information Technology and has begun to enable the construction of specialized networks. These networks aid in the mobilization of resources on a global platform.[1] There is a need for governance structures that embody this globalized thinking and adopt superior information technology devices to bridge gaps in the operation and participation of not only political functions but also economic processes and operations.[2] Currently, public institutions fall short of an optimum level of functioning simply because they lack the information, know-how and resources to respond effectively to this newly globalized and economically liberalized world order. Civil society is beginning to seek a greater participatory voice in both policy making and ideating, which require public institutions to institute a method of allowing this participation while at the same time retaining the crux of their functions and processes. The network society thus requires, As argued by Castells, a new methodology of social structuring, one amalgamating the analysis of social structure and social action within the same overarching framework.[3] This Network propounds itself as a 'dynamic, self-evolving structure, which, powered by information technology and communicating with the same digital language, can grow, and include all social expressions, compatible with each network's goals. Networks increase their value exponentially through their contribution to human resources, markets, raw materials and other such components of production and distribution.' [4]

As noted by Kevin Kelly,' The Atom is the past. The symbol of science for the next century is the dynamical Net.…Whereas the Atom represents clean simplicity, the Net channels the messy power of complexity. The only organization capable of nonprejudiced growth or unguided learning is a network. All other topologies limit what can happen. A network swarm is all edges and therefore open ended any way you come at it. Indeed the network is the least structured organization that can be said to have any structure at all. ..In fact a plurality of truly divergent components can only remain coherent in a network. No other arrangement - chain, pyramid, tree, circle, hub - can contain true diversity working as a whole .'[5]

A network therefore is integral to the facilitation, coordination and advocacy of different agenda within a singular framework, which seeks to formulate suitable responses to a wide range of problems across regions. An ideal model of a network would therefore be one that is reflective of the interconnectivity between relationships, strengthened by effective communication and based on a strong foundation of trust.

The most powerful element of a network is however the idea of a common purpose. The pursuit is towards similar ends and therefore the interconnected web of support it offers is in realization of a singular goal,

II. Evolution of the Network

There are certain norms that must be incorporated for a network to be able to work at its best. Robert Chambers, in his book, Whose Reality Counts? Identifies these norms and postulates their extension to every form of a network, in order to capture its creative spirit and aid in the realization of its goals.[6] A network should therefore ideally foster four fundamental elements in order to inculcate an environment of trust, encouragement and the overall actualization of its purpose. These elements are; Diversity or the encouragement of a multitude of narratives from diverse sources, Dynamism or the ability of participants to retain their individual identities while maintaining a facilitative structure, Democracy or an equitable system of decision making to enable an efficient working of the net and finally, Decentralization or the feasibility of enjoying local specifics on a global platform.[7]

In order to attain these ideal elements it is integral to strengthen certain aspects of the practice through performing specific and focused functions, these include making sure of a clear broad consensus, which ensures the co-joining of a common purpose. Additionally, centralization, in the form of an overarching set of rules must be kept to a minimum, in order to facilitate a greater level of flexibility while still providing the necessary support structure. The building of trust and solid relationships between participants is prioritized to enhance creative ideation in a supportive environment. Joint activities, more than being output oriented are seen as the knots that tie together the entire web of support. Input and participation are the foremost objectives of the network, in keeping with the understanding that "contribution brings gain". [8]

Significant management issues that plague networks include the practical aspects of bringing the network into function through efficient leadership and the consolidation of a common vision. A balanced approach would entail a common consultation on the goals of the network, the sources of funding and an agreed upon structure within which the network would operate. It is also important to create alliances outside of the sector of familiarity and ensure an inclusive environment for members across regions, allowing them to retain their localized individuality while affording them with a global platform. [9]

III. Structure

The structural informality of a network is essential to its sustenance. Networks must therefore ensure that they embody a non-hierarchized structure, devoid of bureaucratic interferences and insulated from a centralized system of control and supervision. This requires an internal system of checks and balances, consisting of periodic reviews and assessments. Networks must therefore limit the powers of supervision of the secretariat. The secretariat must allow for the coordination of its activities and allocate appropriate areas of engagement according to the relative strength of the participating members.

One form of a network structure, postulated within a particular research study is the threads, knots and Nets model. [10] It consists of members within a network bound together by threads of relationship, communication and trust. These threads represent the commonality that binds together the participants of the particular network. The threads are established through common ideas and a voluntary participation in the process of communication and conflict resolution. [11]

The knots represent the combined activities which the participants engage in, with the common goal of realizing a singular purpose. These knots signify an optimum level of activity, wherein members of the network are able to support, inspire and confer tangible benefits onto each other. The net represents the entire structure of the network, which is constructed through a confluence of relationships and common activities. [12] The structure is autonomous in nature and allows participants to contribute without losing their individual identities. It is also dynamic and flexible; incorporating new elements with relative ease. It is therefore a collaboration which affords onto its members the opportunity to expand without losing its purpose. The maintenance of such a structure requires constant review and repair, with adequate awareness of weak links or "threads" and the capability and willingness to knot them together with new participants, thereby extending the net.

For example, the Global Alliance for Vaccines and Immunization used a system of organizational "milestones" to monitor the progress of the network and keep the network concentrated. It requires a sustained institutional effort to fulfill its mandate of "the right of every child to be protected against vaccine-preventable diseases" and brings together international organizations, civil society and private industry. [13] As postulated within the Critical Choices research study of the United Nations, clearly defined milestones are integral to sustaining an effective support mechanism for donors and ensuring that all relevant participants are on board. [14] This also allows for donors to be made aware of the tangible outcomes that have been achieved by the network. Interim goals that are achievable within a short span of time also afford a sense of legitimacy onto the network, allowing it to deliver on its mandate early on. Setting milestones would require an in depth focus and a nuanced understanding of specific aspects of larger problems and delivering early results on these problems would allow for a foundational base of trust, on the foundation of which, a possibly long drawn out consultative process can be fixed.[15]

A Network might often find alliances outside of its sector of operation. For example, Greenpeace was able to make its voice heard in International Climate Change negotiations by engaging with private insurance companies and enlisting their support.[16] The organization looked towards the private sector for support to mobilize resources and enlist the requisite expertise within their various projects. [17]

A. Funding

The financial support a network receives is essential for its sustenance. The initial seed money it receives can be obtained from a single source however, cross sectoral financing is necessary to build a consensus with regards to issues that may be a part of the network's mandate. The World Commission for Dams (WCD), for example, obtains funding from multiple sources in order to retain its credibility. The sources of funding of the WCD include government agencies, multilateral organizations, business associations, NGO's and Government Agencies, without a single donor contributing more than 10% of the total funding it receives.[18] However, the difficulty with this model of funding is the relative complexity in assimilating a number of smaller contributions, which may take away from its capacity to expand its reach and enhance the scope of its work. Cross sectoral funding is less of a fundamental requirement for networks whose primary mandate is implementation, such as The Global Environment Facility (GEF), whose legitimacy is derived from intergovernmental treaties and is therefore only funded by governments.[19] The GEF has only recently broadened its sources of funding to include external contributions from the private sector.

A network can also be funded through the objective it seeks to achieve through the course of its activities. For example, Rugmark an international initiative which seeks to mitigate the use of child labor in South Asia uses an external on site monitoring system to verify and provide labels certifying the production of carpets without the use of child labor.[20] The monitors of this system are trained by Rugmark and carpet producers have to sign a binding agreement, undertaking not to employ children below the age of 14 in order to receive the certification. The funds generated from these carpets, for the import of which American and European importers pay 1% of the import value, are used to provide rehabilitation and education facilities for the children in affected areas. The use of these funds is reported regularly. [21]

The funding must be sustained for a few years, which is a difficult task for networks that require an overall consensus of participants. The greatest outcomes of the network are not tangible solutions to the problem but the facilitation of an environment which allows stakeholders to derive a tangible solution. Thus, the elements of trust, communication and collaboration are integral to the efficient functioning of the network. However, the lack of tangible outcomes exposes the funders to financial risks. The best way to reduce such risks is to institute an uncompromising time limit for the initiative, within which it must achieve tangible results or solutions that can be implemented. A less stringent approach would be to incorporate a system of periodic review and assessment of the accomplishments of the network, subsequent to which further recommendations may be made for a further course of action.[22]

B. Relationships

A three year study conducted by Newell & Swan drew definitive conclusions with respect to the inter-organizational collaboration between participants within a network. The study determined that there currently exist three types of trust; Companion trust or the trust that exists within the goodwill and friendship between participants, Competence trust, wherein the competence of other participants to carry out the tasks assigned to them is agreed upon and lastly, Commitment trust or the trust which is predicated on contractual or inter-institutional that are agreed upon. [23] While companion and competence trust are easily identifiable, commitment trust is more subjective as it is determined by the agreement surrounding the core values and overall identifiable aims. Sheppard & Tuchinsky refer to an identification based trust which is based on a collective understanding of shared values. Such a trust requires significant investment but they argue, "The rewards are commensurably greater and the he benefits go beyond quantity, efficiency and flexibility." [24] Powell postulates, "Trust and other forms of social capital are moral resources that operate in fundamentally different manner than physical capital. The supply of trust increases, rather than decreases, with use: indeed, trust can be depleted if not used." [25]

Karl Wieck endorses the "maintenance of tight control values and beliefs which allow for local adaptation within centralized systems." [26] The autonomy that participants within a network enjoy is therefore considered to be close to sacred, so as to allow them to engage with each other on an equitable footing, while still maintain their individual identities. Freedman and Reynders believe that networks place a so called 'premium' on " the autonomy of those linked through the network…..networks provide a structure through which different groups - each with their own organizational styles, substantive priorities, and political strategies - can join together for common purposes that fill needs felt by each. "[27] Consequently, lower the level of centralized control within a network, the greater the requirement of trust. Allen Nan resonates with this idea, as is evident from her review of coordinating conflict resolution NGO's. She believes that these NGO's are most effective when " beginning with a loose voluntary association which grows through relationship building, gradually building more structure and authority as it develops. No NGO wants to give away its authority until it trusts a networking body of people that it knows. " [28]

C. Communication and Collaboration

The binding force that ties together any network is the importance of relationships between participants and their interactions with organizations outside the network. Research has shown that face to face interaction works best and although email may be practical, a face-to-face meeting at regular intervals builds a level of trust amongst participants. [29] It is however important to prevent network from turning into 'self-selecting oligarchies' and to prevent this, there needs to be a balance drawn between goodwill and the trust in others' competence along with a common understanding of differently hierarchized values. [30]

There is also an impending need to develop a relationship vocabulary, as suggested by Taylor, which would be of particular use within transnational networks and afford a deeper understanding of cross cultural relationships.[31]

D. Participation

A significant issue that networks today have to address is how to inculcate and then subsequently maintain participation in the activities of the network. This would include providing incentives to participants, encouraging diversity and enabling greater creative inflow across sectors to generate innovative output. Participation involves three fundamental elements; Action, which includes active contribution in the form of talking, listening, commenting, responding and sharing information, Process, which aids in an equitable system of decision making and constructing relationships and the underpinned values associated with these two elements, which include spreading equality, inculcating openness and including previously excluded communities or individuals. [32] Participation in itself envisages a three leveled definition; participation as a contribution, where people offer a tangible input, participation as an organization process, where people organize themselves to influence certain pre-existing processes and participation as a form of empowerment where people seek to gain power and authority from participating.

In order to create an autonomous system of evaluating and monitoring the nature and context of participation, a network would have to attempt to systematically incorporate a few fundamental processes, such as; enabling an understanding of the dynamism of a network through an established criteria of monitoring the levels of participation of the members, creating an explicit checklist of qualifications of this participation, such as the contributions of the participants, the limits of commitment and the available resources that must be shared and distributed, acknowledging the importance of relationships as fundamental to the success of any network., building a capacity for facilitative and shared leadership, tracing the changes that occur when the advocacy and lobbying activities of individuals are linked and using these individuals as participants who have the power to influence policy and development at various levels.[33] Finally, the recognition that utilizing the combined faculties of the network would aid in the effectuation of further change is vital to sustaining an active participation in the network.[34] It is common for networks to stagnate simply because of the lack of clarity on what a network really is or what it entails. There are significant misconceptions as to the activities engaged in by the network, such as the idea that a network "works solely as a resource center, to provide information, material and papers, rather than as forums for two way exchanges of information and experiences," contribute to the misunderstanding regarding the participation requirements within a network.[35] To facilitate an active, participatory function of learning, a network needs to be more than a resource center that seeks to meet the needs of beneficiaries. While meeting these needs is essential, development projects tend to obfuscate the benefit/input relationship within a network, thus significantly depleting its dynamism quotient. [36]

One method of moving away from the needs based model is to create a tripartite functionary, as was created within a particular research study. [37] This involves A Contributions Assessment, A Weaver's Triangle for Networks and An identification of channels of participation.

Contributions Assessment is an analysis of what the participants within a network are willing to contribute. It enables the network to assess what resources it has access to and how those resources may be distributes amongst the participants, multiplied or exchanged. [38] This system is predicated on a premise of assessing what participants have to offer as opposed to what they need. It challenges the long held notion of requiring an evaluation to identify problems, to address which recommendations are made and in fact seeks to focus on the moments of excellence and enable a discussion on the factors that contributed to these moments. [39] It thus places a value on the best of "what is" as opposed to trying to find a plausible "what ought to be". This approach allows participants to recognize that they are in fact the real "resource Centre" of the network and are encouraged act accordingly.

A Contributions Assessment may be practically incorporated through a few steps. It must be focused on the contributions, after a discussion on who the contributors may be. The aims of the network must be clarified, along with a specification of the contributions required such as perhaps newsletters, a conference, policy analysis etc. The members of the network must be clear on what they would like to contribute to the network and how such contribution might be delivered. Finally, the secretariat must be able to ideate or innovate on how it can enable more contributions from the networks in a more effective manner. [40]

The Weaver's Triangle has been adapted to be applies within networks and enables participants to understand what the aims and activities of the network are. It identifies the overall aim of the network and the change the network seeks to bring about to the status quo. It then lays out the objectives of the network in the form of specific statements about the said differences that the network seeks to bring about. Finally, the network would have to explain why a particular activity has been chosen. [41] The base of the triangle reflects the specific activities that the network seeks to engage in to achieve the said objectives. The triangle is further divided into two, to ensure that action aims and process aims have equal weightage; this allows for the facilitation of an exchange and a connection between the members of the network. [42]

The Circles of Participation is an idea that has been put forth by the Latin American and Caribbean Women's Health Network. (LACWHN). [43] This Network has three differentiated categories of membership, which it uses to determine the degree of commitment of an organization to the network. R- refers to the members who receive the women's health journal, P refers to members who actively participate in events and campaigns and who are advisors for specific topics. PP refers to the permanent participants within the network at national and international levels. They also receive a journal. This categorization allows the network to make an assessment of the dynamism and growth of a network, with members moving through the categories depending on their levels of participation. [44]

An important space for contributions to the network is the newsletter. This can be facilitated by allowing contributions from various sources, provided they meet the established quality checks, ensuring a balance between regions of origin of the members of the network, ensuring a balance between the policy and program activities of the members and keeping the centralized editorial process to a minimum. This is in keeping with the ideal of a decentralized system of expression that allows each member to retain its individuality while still contributing to the aims of the network. The Women's Global Network on Reproductive Rights (WGNRR) sought to create a similar system of publication to measure the success of their linkages, the levels of empowerment amongst members, in terms of strategizing and enabling localized action and the allocation of space in a fair and equitable manner. [45] Another Network, Creative Exchange customizes its information flow within the network so that each member only receives the information it expresses interest in.[46] This prevents the overburdening of members with unnecessary information.

The activities of the network which don't directly pass through the secretariat or the coordinator of the network can be monitored efficiently by keeping I close contact with new entrants to the network and capturing the essence of the activities that occur on the fringes of the network. This would allow an assessment of the diversity of the network. For example, Creative exchange sends out short follow up emails to determine the number and nature of contacts that have been made subsequent to a particular item in the newsletter. The UK Conflict Development and Peace Network (CODEP) records the newest subscribers to the network after every issue of their newsletter and AB Colombia sends out weekly news summaries electronically which are available for free to recipients who provide details of their professional engagements and why or how they wish to use these summaries. [47] This enables the mapping of the type of recipients the information reaches.

E. Leadership and Coordination

Sarason and Lorentz postulate four distinguishing characteristics that capture the creativity and expertise required by individuals leading and coordinating networks.[48] Knowledge of the territory or a broad understanding of the type of members, the resources available and the needs of the members is extremely important to facilitate an ideal environment of mutual trust and open dialogue between the members. Scanning the network for fluidity and assessing openings, making connections and innovating solutions would enable an efficient leadership that would contribute to the overall dynamism of the network. In addition to this, perceiving strengths and building on assets of existing resources would allow the network to capitalize on its strengths. Finally, the coordinators of a network must be a resource to all members of the network and thus enable them to create better and more efficient systems. They must therefore exercise their personal influence over members wherever required for the overall benefit of the network. Practically, a beneficial leadership would also require an inventive approach by providing fresh and interesting solutions to immediate problems. A sense of clarity, transparency and accountability would also encourage members of the network to participate more and engage with each other. It is important for the leadership within a network to deliver on expectations, while building consensus amongst its members.

A shared objective, a collaborative setting and a constant review of strategies is important to maintain linkages within a network. Responsible relationships underpinned by values and supported by flows of relevant information would allow an effective and fruitful analysis by those who are engaged within a network to do the relevant work. In addition to this, a respect for the autonomy of the network is essential.

F. Inclusion

Public policy networks are more often than not saturated with the economic and social elite from across the developed world. A network across the Global South would have to change this norm and extend its ambit of membership to grass root organizations, which might not have otherwise had the resources or the opportunity to be a part of a network.[49] Networks can achieve their long term goals only if they are driven by the willingness to include organizations from across economic demographics. This would ensure that their output is the result of a collaborative process that takes into account cross cultural norms and differentials across economic demographics.

The participation of diverse actors is reflective of the policy making processing having given due regard to on the ground realities and being sensitive towards the concerns of differently placed interest groups. Networks have been accused of catering only to the needs of industrial countries and subscribing to values of the global north thus stunting local development and enforcing double standards. This tarnishes the legitimacy of the processes inculcated within the network itself. It is therefore all the more essential that a network focused on the global south have a diverse collection of members from across backgrounds and economic contexts. Additionally, the accountability of the network to civil society is dependent on the nature of the links it maintains with the public. Inclusion thus fosters a sense of legitimacy and accountability. The inclusion of local institutions from the beginning would also increase the chances of the solutions provided by the network, being effectively implemented. Local inclusion affords a sense of responsibility and ensures that the network would remain sustainable in the long run. Allowing local stakeholders to take ownership of the network and participate in the formulation of policies, engage in planning and facilitate participation would enable an efficient addressing of significant public policy issues. [50] Thus networks would need to create avenues for participation of local institutions and civil society to engage in a democratic form of decision making.

III. Evaluation

The process of evaluation of a network is most efficiently effectuated through a checklist that has been formulated within a research study for the purpose of evaluating its own network. [51]

This checklist enumerates the various elements that have to be taken into consideration while evaluating the success of a network, as follows;

FIG 1.[52]

1. What is a network? 'Networks are energising and depend crucially on the motivation of members' (Networks for Development, 2000:35) This definition is one that is broadly shared across the literature, although it is more detailed than some. A network has: A common purpose derived from shared perceived need for action Clear objectives and focus A non-hierarchical structure A network encourages Voluntary participation and commitment The input of resources by members for benefit of all A network provides Benefit derived from participation and linking 2. What does a network do? Facilitate shared space for exchange, learning, development - the capacity-building aspect Act for change in areas where none of members is working in systematic way - the advocacy, lobbying and campaigning aspect Include a range of stakeholders - the diversity/ broad-reach aspect 3. What are the guiding principles and values? Collaborative action Respect for diversity Enabling marginalised voices to be heard Acknowledgement of power differences, and commitment to equality 4. How do we do what we do, in accordance with our principles and values? Building Participation Knowing the membership, what each can put in, and what each seeks to gain Valuing what people can put in Making it possible for them to do so Seeking commitment to a minimum contribution Ensuring membership is appropriate to the purpose and tasks Encouraging members to be realistic about what they can give Ensuring access to decision-making and opportunities to reflect on achievements Keeping internal structural and governance requirements to a necessary minimum. Building Relationships and Trust Spending time on members getting to know each other, especially face-to-face Coordination point/secretariat has relationship-building as vital part of work Members/secretariat build relations with others outside network - strategic individuals and institutions Facilitative Leadership (may be one person, or rotating, or a team) Emphasis on quality of input rather than control Knowledgeable about issues, context and opportunities, Enabling members to contribute and participate Defining a vision and articulating aims Balancing the creation of forward momentum and action, with generating consensus Understanding the dynamics of conflict and how to transform relations Promoting regular monitoring and participatory evaluation Have the minimum structure and rules necessary to do the work. Ensure governance is light, not strangling.Give members space to be dynamic Encourage all those who can make a contribution to the overall goal to do so, even if it is small. Working toward decentralised and democratic governance At the centre, make only the decisions that are vital to continued functioning. Push decision-making outwards. Ensure that those with least resources and power have the opportunity to participate in a meaningful way. Building Capacity Encourage all to share the expertise they have to offer. Seek out additional expertise that is missing. 5. What are the evaluation questions that we can ask about these generic qualities? How do each contribute to the achievement of your aims and objectives? Participation What are the differing levels or layers of participation across the network? Are people participating as much as they are able to and would like? Is the membership still appropriate to the work of the network? Purpose and membership may have evolved over time Are opportunities provided for participation in decision-making and reflection? What are the obstacles to participation that the network can do something about? Trust What is the level of trust between members? Between members and secretariat? What is the level of trust between non-governing and governing members? How do members perceive levels of trust to have changed over time? How does this differ in relation to different issues? What mechanisms are in place to enable trust to flourish? How might these be strengthened? Leadership Where is leadership located? Is there a good balance between consensus-building and action? Is there sufficient knowledge and analytical skill for the task? What kind of mechanism is in place to facilitate the resolution of conflicts? Structure and control How is the structure felt and experienced? Too loose, too tight, facilitating, strangling? Is the structure appropriate for the work of the network? How much decision-making goes on? Where are most decisions taken? Locally, centrally, not taken? How easy is it for change in the structure to take place? Diversity and dynamism How easy is it for members to contribute their ideas and follow-through on them? If you map the scope of the network through the membership, how far does it reach? Is this as broad as intended? Is it too broad for the work you are trying to do? Democracy What are the power relationships within the network? How do the powerful and less powerful interrelate? Who sets the objectives, has access to the resources, participates in the governance? Factors to bear in mind when assessing sustainability Change in key actors, internally or externally; succession planning is vital for those in central roles Achievement of lobbying targets or significant change in context leading to natural decline in energy; Burn out and declining sense of added value of network over and above every-day work. Membership in networks tends to be fluid. A small core group can be a worry if it does not change and renew itself over time, but snapshots of moments in a network's life can be misleading. In a flexible, responsive environment members will fade in and out depending on the 'fit' with their own priorities. Such changes may indicate dynamism rather than lack of focus. Decision-making and participation will be affected by the priorities and decision-making processes of members' own organisations. Over-reaching, or generating unrealistic expectations may drive people away Asking same core people to do more may diminish reach, reduce diversity and encourage burn-out

V. Learning and Recommendations

In order to facilitate the optimum working of a network several factors need to be taken into consideration and certain specific processes have to be incorporated into the regular functioning of the network. These are for example,

Ensuring that the evaluation of the network occurs at periodic intervals with the requisite level of attention to detail and efficiency to enable an in depth recalibration of the functions and processes of the network. To this effect, evaluation specialists must be engaged not just at times of crises or instability but as accompaniments to the various processes undertaken by the network. This would enable a holistic development of the network.
It is also important to understand the underlying values that define the unique nature of the network. The coordination of the network, its functions and its activities are intrinsically linked to these values and recognition of this element of the network would enable a greater functionality in the overall operation of the network.
A strong relationship between the members of the network, predicated on trust and open dialogue is essential for its efficient functioning. This would allow the accumulation of innovative ideas and dynamic thought to direct the future activities of the network.
The Secretariat or coordinator of the network must be able to engage the member in monitoring and evaluating the progress of the network. One method of enabling this coordination is through the institution of 'participant observer' methods at international conferences or meetings, which allow the members of the network to report back on the work that they have, which is linked to the work of other members.
The autonomy of a network and its decentralized mechanism of functioning are integral to retain the individuality of its members, who seek to pursue institutional objectives. The members seek to facilitate creative thinking and share ideas and this must be supported by financial resources. A strong bond of trust between the members of a network is therefore essential to enable long term commitments and the flourishing of interpersonal communication between members.
It is important that the subject area of operation of the network be comprehensively defined before the network comes into existence.
As seen with the experience of Canadian Knowledge Networks, it is beneficial to be selective in inviting participant to the network and following a rigorous process of review and selection would ensure that only the best candidates are selected so as to facilitate effective partnerships with other networks, as a result of demonstrable expertise within a particular field.
The management of a network must be disciplined, with clearly demarcated project deadlines and an optimum level of transparency and accountability. At the helm of leadership of every successful network, there has been intelligent, decisive and facilitative exchange, which is essential in securing a durable and potentially expandable space for the network to operate in.

A. Canadian Perspectives

A study of Canadian experiences was conducted by examining The Centers of Excellence and the Networks of Centers of Excellence (NCEs), which were funded through three Federal Granting Councils.[53] An initial observation that was made through the course of this study was that each network is intrinsically different and there is no uniform description which would fit all of them. The objectives of the Networks of Centers of Excellence Program are broadly, as follows; to encourage fundamental and applied research in fields which are critical to the economic development of Canada, to encourage the development and retention of world class scientists and engineers specializing in essential technologies, to manage multidisciplinary, cross sectoral national research programs which integrate stakeholder priorities through established partnerships and finally, to accelerate the exchange of research results within networks by accelerating technology transfers, made to users for social and economic development. [54] Extensive interviews carried out in the course of the research conducted by the ARA Consulting Group Inc. drew up particularly relevant conclusions with respect to the NCEs.

Firstly, they have been able to produce significant "cultural shifts" among the researchers associated with the network. This is attributed to the network facilitating a collaborative effort amongst researchers as opposed to their previous working, which was largely in isolation. The benefits of this collaboration have been identified as providing innovative ideas and leading the research itself in unprecedented directions. This has the effect of equipping Canada with the capability to compete on a global level with respect to its research endeavors. The culture shift has also allowed researchers to be more aware of the problems that plague industry and has instigated more in depth research into the development of the industrial sector. Government initiatives that have attempted to cohesively apply academic research to industry have had limited success. The NCE's however have managed to successfully disintegrate the barriers between these two seemingly disparate fields. This has resulted in a faster and more effective system of knowledge dissemination resulting in durable and self-sustaining economic development, which takes place at a faster rate. The NCE's have also been able to contribute to healthcare, wellness and overall sustainable development through their cross sectoral research approach, a model that can be used worldwide.

Another tangible effect has been that the relationship between industry and academic research is evolving into a positive and collaborative exchange, as opposed to the previous state which was largely isolationist, bordering on confrontational.[55] A possible cause of this is the increased representation of companies in the establishment of networks resulting in them influencing the course of research. This has not been met with any resistance from academic researchers who are driven by the imperative of an open publication. [56] Besides influencing the style of management, industrial representation has also brought about an increase in the level of private sector financial contributions made to NCEs. It is believed that these NCEs may even be able to support themselves in the next 7-8 years through the funding they receive from the commercialization of their research.

A third benefit that has emerged is the faster rate of production of new knowledge and innovative thinking. This is the result of collaborative techniques which is made more efficient through the use of modern technology. The increasing number of multi authored cross institutional scholarly publications made available by the NCE is evidentiary of this trend. The rate and quantity of technology transfers has also increased exponentially as a result of this. Knowledge networks also facilitate the mobilization of human resources and address cross disciplinary problems, resulting in an efficient and synergistic solutions. Their low cost, fast pace approach has been instrumental in constructing an understanding of and capacity to engage in sustainable development.

The significant contributions to sustainable development include the Canadian Genetic Diseases Network, which has discovered two specific genes that cause early onset Alzheimer's disease. The Sustainable Forest Management Network has claimed that its research does have a considerable level of influence on the industrial approach to sustainability. The Canadian Bacterial Disease Network conducts research on bacterially caused diseases which are mostly prevalent in developing countries, with a view to produce antibiotics and vaccines that may be able to successfully combat these vaccines. TeleLearning, another such network is working on the creation of software environments which will form the basis of technology based education in the future. [57] The greatest advantage of these knowledge networks is that they have been able to surpass traditional disciplinary barriers and have emerged at the forefront of interdisciplinary articulation, which is emerging as the path to breakthroughs in the fields of applied sciences and technology in the future. The NCE's have also been able to provide diverse working environments for graduate students, where they have been able to work under scientists associated with different specializations and across different departments. They have also been able to interact with government and industry representatives, giving them a far greater exposure of the field and equipping them to avail of a wide range of employment opportunities.

The corporate style of management incorporated within the NCEs encourages a sense of discipline and an enthusiasm for innovation. The Board of Directors at NCE's take on a perfunctory role and function as a typical corporate board. Researchers are therefore required to provide regular reports and meet deadlines to achieve predetermined goals that have been agreed upon. The new paradigm of sustainable development and the fluid transfer of knowledge requires this structure of management, even within a previously strictly academically oriented environment. NCEs have been incorporated as non-profit corporation for largely legal reasons such as the ownership of intellectual property.

The participation to these networks is restricted and is open only through an invitation, in the form of a submission of project proposals under a particular theme, with the final selection being made subject to a rigorous process of evaluation. This encourages the participants of the network to embody a degree of discipline and carry out their activities in a constructive, time bound manner.

B. Perceived Challenges

These knowledge networks, although extremely beneficial in the long run, do have certain specific issues that need to be addressed. Firstly, most formal knowledge networks do not have a formalized communication strategy. While they do make use of various forms of telecommunication, this communication is is no way formally directed or specific. Although some networks have managed to set up a directed communications strategy, supplemented by the involvement of specifically communications based networks (such as CANARIE) , there is still a long way to go in this area.

As is evident with most academic endeavors in recent years, efficient and sustained development both in terms of economy as well as self-sustenance, requires a smooth transitioning to a close collaboration with the industry. Although the NCE's have made progress in this area, a lesson that can be learnt from this is that knowledge networks do require a collaborative arrangement between researchers, the industry and the financial sector. [58] The nature of this collaboration cannot be predicted before tangible research outputs are developed that reflect the relevance of academia in the industrial and financial sectors. A particular network, PENCE has mandated that the boards of directors include a representative of the financial sector. This is a step forward in opening the doors to greater collaboration and mutually assured growth and sustainable development in both academia as well as the industrial and financial sectors.

As with all knowledge networks there is a continuous need for expansion of the focus areas to cover more fields and instigate research in neglected areas. The largest number of networks has been in the fields of healthcare and health associated work. However there is an impending need for networks to be established in other fields as well, such as those related to environmental issues, social dynamics and the general quality of life. [59]

The Canadian experience has resulted in a nuanced understanding of specific actions that need to be taken to strengthen knowledge networks across the spectrum. Firstly, there is an impending need to build new knowledge networks, which would be required to strengthen institutions upon which the networks are based. These include universities and research institutions, which have been weakened both financially and academically over the past few years. The NCE Program, on the face of it, seems to be strengthening universities, by attracting funding for research endeavors that would otherwise not be available to them. While this may be true, it tends to obfuscate the true nature of a university as an intellectual community, by portraying it as a funding source for research and equipment.[60] The deteriorating role of the university in fostering research and laying the foundation of an intellectual community can be reversed by the competition posed by the NCEs which tend to threaten its stature in the fields of multi-disciplinary and graduate institution. Another aspect that needs to be considered is the role of knowledge networks in fostering sustainable development not only on a national or regional scale but on a global level. This can be effectuated by allowing the amalgamation of the academia and industry through ample representation, a model that has proven to be effective within the NCEs. This is all the more relevant today where multinational corporations hold considerable sway over the global economy, so much so that the role of governments in regulating this economy is gradually decreasing. Multilateral investment treaties and agreements are reflective of this.

The final issue is that of the long standing debate between public good and proprietary knowledge. Canadian knowledge networks are of the opinion that knowledge must be freely disseminated. However, certain networks including the NCEs grant the exclusive right of the development and application of this knowledge to specific industry affiliates. On one hand this facilitates further investment into the research, which creates better products, new jobs and further social development. This is predicated on a fine balance of allowing this development without widening the already disparate socio-economic gaps that exist between developed and developing countries. Thus the balance between public good and propriety knowledge must be effectively managed by the regulatory role discharged by the governments and the decision making faculties of these knowledge networks. [61]

Establishing international linkages across networks based within different regions across the world would also be an effective means of ensuring effective partnerships and the creation of a new, self-sustaining structure. This would bring new prospects of funding into sustainable development activities and engage industrial affiliates with international development activities.

C. Donor Perspectives

The International Development Research Centre, based in Canada has also been instrumental in the setting up of support structures for networks. The IDRC has remained consistent in its emphasis of networks as mechanisms of linking scientists engaged in similar problems across the globe instead of as mechanisms to fund research in countries. This has afforded the IDRC with a greater level of flexibility in responding to the needs of developing countries as well as responding to the financial pressures within Canada to deliver superior technical support with a reduction in overheads. The IDRC sees networking an indispensable aspect of scientific pursuit and technological adaptation in the most effective manner. It is currently supporting four specific types of networks; horizontal networks which link together institutions with similar areas of specialization, vertical networks which work on disparate aspects of the same problem of different but interrelated problems, information networks which provide a centralized form of information service to members, which enables them to exchange information in the manner necessary and finally training networks which provide supervisory services to independent participants within the network.[62]

(I) Internal Evaluations

There is an outstanding need to monitor visits that are undertaken by the coordinator or the specific representatives of the member or donor as applicable. This would expedite the process of identifying problems and aid in deriving tangible solutions in an efficient manner. The criteria for the assessment would vary depending on the goals of the organization. Donors may pose questions with respect to the cost effectiveness of a particular pattern of research and may seek a formal report regarding this aspect. A more extensive model of donor evaluations may even include assessments with respect to the monitoring and coordination of specific functions.

(II) External Evaluations

A system of external evaluation would be useful with assessing data with respect to the operations of programs and their objectives. This would engage newer participants by injecting newer ideas and insights into the management and scope of the network. The most extensive method of network evaluation was one that was postulated by Valverde [63] and reviewed by Faris [64]. It aimed to draw an analysis of particular constraints and specific elements that would influence the execution of network programs. This method identifies a list of threats, opportunities, strengths and weaknesses which would inform future recommendations. The Valverde method makes use of both formal as well as informal data which is varied depending on the type of network and the management structure it employs.[65]

(III) Financial Viability

A network almost always requires external resources to aid in the setting up and coordination of its activities. Donor agencies must recognize the long term commitment that is required in this respect. It is therefore essential that the period for which this funding will be made available be clarified at the outset, to leave agencies with ample time to plan for the possibility of cessation of external financial support. [66] As concluded from the findings of the research study, although most networks are offered external support, it is primarily technology transfer and information networks that have been able to generate the bulk of funding in this respect. They have been able to obtain this financial assistance from a variety of sources including participating organizations as well as governments. [67] The funding for purely research networks however are inconsistent and the networks would have to plan in advance for a possible cessation of financial support.[68]

(IV) Adaptability

From the perspective of donors, the degree of adaptability and level of responsiveness of a particular network is especially relevant in assessing the coordination, control and leadership of a particular network. A network that is plagued by ineffective leadership and the lack of coordination is unable to adapt to changing circumstances and meet the needs of its participants. A combination of collaborative effort, a localized approach and far-sighted leadership instills in the participants of the network a sense of comfort in its processes and in the donors a faith in its ability to address topical issues and remain relevant.

(V) The Exchange of Information

As noted by Akhtar, a network is created to respond to the growing need to improve channels of information exchange and communication. [69] Information needs to be tailored to suit its users and must be disseminated accordingly. The study conducted has concluded that information networks that are engaged in the transfer of technology are inefficient in disseminating internally derived information and recognizing the needs of their users.[70] Given that these networks are especially user oriented this systemic failure is extremely problematic. There is also a need to review the mechanism of transferring strategic research techniques and the approaches employed in dealing with developing countries. Special attention must be paid to the beneficiaries of a particular network so that the research conducted is directed towards that particular demographic. This is especially relevant for information networks, which from the evaluation; appear to be generating data but not considering who would be using these services.[71]

(VI) Capacity Building

Facilitating the training of individuals both on a formal and informal level has led to an enhance level of research and reporting, as well as the designing of projects. There is however a need to tailor this training to suit the needs of the participants of a particular network. Networks which have been able to provide inputs which are not ordinarily locally provided have instigated the establishment of national and regional institutions. [72]

(VII) Cost Effectiveness

It is important to note however that networks need to employ the most cost effective mechanism of delivering support services to national programs. A network must work in a manner that allows for enough individual enterprise but at the same time follows a collaborative model to generate more effective and relevant research within a short span of time and through the utilization of minimum resources. The Caribbean Technology Consultation Services (CTCS) for example was found to be far more cost effective and in fact 50% cheaper than the services of the United Nations Industrial Development Organization. [73] Similarly, the evaluators of the LAAN found that funding a network was significantly cheaper than finding individual research projects.[74]

[1] Castells, Manuel (2000) "Toward a Sociology of the Network Society" Contemporary Sociology, Vol

29 (5) p693-699

[2] Reinicke, Wolfgang H & Francis Deng, et al (2000) Critical Choices: The United Nations, Networks

and the Future of Global Governance IDRC, Ottawa

[3] Supra ., n.1, p.697

[4] Ibid

[5] Supra n.1, p.61

[6] Chambers, Robert (1997) Whose Reality Counts? Putting the First Last Intermediate Technology

Publications, London

[7] Ibid

[8] Chisholm, Rupert. F (1998) Developing Network Organizations: Learning from Practice and Theory

Addison Wesley

[9] Brown, L. David. 1993. "Development Bridging Organizations and Strategic

Management for Social Change." Advances in Strategic Management 9.

[10] Madeline Church et al, Participation, Relationships and Dynamic change: New Thinking On Evaluating The Work Of International Networks Development Planning Unit, University College London (2002), p. 16

[11] Ibid

[12] Ibid

[13] Reinicke, Wolfgang H & Francis Deng, et al (2000) Critical Choices: The United Nations, Networks

and the Future of Global Governance IDRC, Ottawa, p.61

[14] Ibid

[15] Ibid

[16] Supra n.13, p. 65

[17] Ibid

[18] Supra n. 13, p. 62

[19] Ibid

[20] Supra n. 13, p. 63

[21] Ibid

[22] Supra n. 13, p. 64

[23] Newell, Sue & Jacky Swan (2000) "Trust and Inter-organizational Networking" in Human Relations,

Vol 53 (10)

[24] Sheppard, Blair H & Marla Tuchinsky (1996) "Micro-OB and the Network Organisation" in Kramer, R.

And Tyler T. (eds) Trust in Organisations, Sage

[25] Powell, Walter W (1996) "Trust-based forms of governance" in Kramer, R. And Tyler T. (eds) Trust in

Organisations , Sage

[26] Stern, Elliot (2001) "Evaluating Partnerships: Developing a Theory Based Framework", Paper for

European Evaluation Society Conference 2001, Tavistock Institute

[27] Freedman, Lynn & Jan Reynders (1999) Developing New Criteria for Evaluating Networks in Karl, M.

(ed) Measuring the Immeasurable: Planning Monitoring and Evaluation of Networks, WFS

[28] Allen Nan, Susan (1999) "Effective Networking for Conflict Transformation" Draft Paper for

International Alert./UNHCR Working Group on Conflict Management and Prevention

[29] Supra n. 10, p. 20

[30] Ibid

[31] Taylor, James, (2000) "So Now They Are Going To Measure Empowerment!", paper for INTRAC 4th

International Workshop on the Evaluation of Social Development, Oxford, April

[32] Karl, Marilee (2000) Monitoring And Evaluating Stakeholder Participation In Agriculture And Rural

Development Projects: A Literature Review, FAO

[33] Supra n. 10, p.25

[34] Ibid

[35] Supra n. 10, p. 26

[36] Ibid

[37] Supra n. 10, p.27

[38] Ludema, James D, David L Cooperrider & Frank J Barrett (2001) "Appreciative Inquiry: the Power of

the Unconditional Positive Question" in Reason, P. & Bradbury, H. (eds) Handbook of Action

Research , Sage

[39] Ibid

[40] Supra n. 10, p. 29

[41] Ibid

[42] Ibid

[43] Sida (2000) Webs Women Weave, Sweden, 131-135

[44] Ibid

[45] Dutting, Gisela & Martha de la Fuente (1999) "Contextualising our Experiences: Monitoring and

Evaluation in the Women's Global Network for Reproductive Rights" in Karl, M. (ed) Measuring the

Immeasurable: Planning Monitoring and Evaluation of Networks , WFS

[46] Supra n. 10, p. 30

[47] Supra n. 10, p. 32

[48] Allen Nan, Susan (1999) "Effective Networking for Conflict Transformation" Draft Paper for

International Alert./UNHCR Working Group on Conflict Management and Prevention

[49] Supra n. 13, p. 67

[50] Supra n. 13, 68

[51] Supra n 10, 36

[52] See Madeline Church et al, Participation, Relationships and Dynamic change: New Thinking On Evaluating The Work Of International Networks Development Planning Unit, University College London (2002), p. 36-37

[53] The three granting councils are: the Natural Sciences and Engineering Research Council (NSERC),

the Social Sciences and Humanities Research Council (SSHRC), and the Medical Research Council

(MRC).

[54] Howard C. Clark, Formal Knowledge Networks: A Study of Canadian Experiences, International Institute for Sustainable Development 1998, p. 16

[55] Ibid, p. 18

[56] Ibid, p. 18

[57] Ibid, p. 19

[58] Ibid , p 21

[59] Ibid , p. 22

[60] Ibid, p. 31

[61] Ibid

[62] Terry Smutylo and Saidou Koala, Research Networks: Evolution and Evaluation from a Donor's Perspective, p. 232

[63] Valverde, C. 1988, Agricultural research networking : Development and evaluation, International Services for National Agricultural Research, The Hague, Netherlands. Staff Notes (18-26 November 1988)

[64] Faris, D.G 1991, Agricultural research networks as development tools: Views of a network coordinator, IDRC, Ottawa, Canada, and International Crops Research Institute for the Semi-Arid Tropic, Patancheru, Andhra Pradesh, India

[65] Supra n. 62

[66] Terry Smutylo and Saidou Koala, Research Networks: Evolution and Evaluation from a Donor's Perspective, p. 233

[67] ibid

[68] Ibid

[69] Akhtar, S. 1990. Regional Information Networks : Some Lessons from Latin America. Information Development 6 (1) : 35-42

[70] Ibid, p. 242

[71] Ibid, p. 242

[72] Ibid., p. 243

[73] Stanley, J.L and Elwela, S.S.B 1988, Evaluation report for the Caribbean Technology Consultancy Services (CTCS), CTCS Network Project (1985-1988) IDRC Ottawa, Canada

[74] Moreau,L. 1991, Evaluation of Latin American Aqualculture Network. IDRC, Ottawa, Canada

For more details visit https://cis-india.org/internet-governance/blog/the-creation-of-a-network-for-the-global-south-a-literature-review

Big Data in the Global South - An Analysis

tanvi — 2016-01-24T02:54:45Z

I. Introduction

"The period that we have embarked upon is unprecedented in history in terms of our ability to learn about human behavior." [1]

The world we live in today is facing a slow but deliberate metamorphosis of decisive information; from the erstwhile monopoly of world leaders and the captains of industry obtained through regulated means, it has transformed into a relatively undervalued currency of knowledge collected from individual digital expressions over a vast network of interconnected electrical impulses.[2] This seemingly random deluge of binary numbers, when interpreted represents an intricately woven tapestry of the choices that define everyday life, made over virtual platforms. The machines we once employed for menial tasks have become sensorial observers of our desires, wants and needs, so much so that they might now predict the course of our future choices and decisions.[3] The patterns of human behaviour that are reflected within this data inform policy makers, in both a public and private context. The collective data obtained from our digital shadows thus forms a rapidly expanding storehouse of memory, from which interested parties can draw upon to resolve problems and enable a more efficient functioning of foundational institutions, such as the markets, the regulators and the government.[4]

The term used to describe a large volume of collected data, in a structured as well as unstructured form is called Big Data. This data requires niche technology, outside of traditional software databases, to process; simply because of its exponential increment in a relatively short period of time. Big Data is usually identified using a "three V" characterization - larger volume, greater variety and distinguishably high rates of velocity. [5] This is exemplified in the diverse sources from which this data is obtained; mobile phone records, climate sensors, social media content, GPS satellite identifications and patterns of employment, to name a few. Big data analytics refers to the tools and methodologies that aim to transform large quantities of raw data into "interpretable data", in order to study and discern the same so that causal relationships between events can be conclusively established.[6] Such analysis could allow for the encouragement of the positive effects of such data and a concentrated mitigation of negative outcomes.

This paper seeks to map out the practices of different governments, civil society, and the private sector with respect to the collection, interpretation and analysis of big data in the global south, illustrated across a background of significant events surrounding the use of big data in relevant contexts. This will be combined with an articulation of potential opportunities to use big data analytics within both the public and private spheres and an identification of the contextual challenges that may obstruct the efficient use of this data. The objective of this study is to deliberate upon how significant obstructions to the achievement of developmental goals within the global south can be overcome through an accurate recognition, interpretation and analysis of big data collected from diverse sources.

II. Uses of Big Data in the Global Development

Big Data for development is the process though which raw, unstructured and imperfect data is analyzed, interpreted and transformed into information that can be acted upon by governments and policy makers in various capacities. The amount of digital data available in the world today has grown from 150 exabytes in 2005 to 1200 exabytes in 2010.[7] It is predicted that this figure would increase by 40% annually in the next few years[8], which is close to 40 times growth of the world's population. [9] The implication of this is essentially that the share of available data in the world today that is less than a minute old is increasing at an exponential rate. Moreover, an increasing percentage of this data is produced and created real-time.

The data revolution that is incumbent upon us is characterized by a rapidly accumulating and continuously evolving stock of data prevalent` in both industrialized as well as developing countries. This data is extracted from technological services that act as sensors and reflect the behaviour of individuals in relation to their socio-economic circumstances.

For many global south countries, this data is generated through mobile phone technology. This trend is evident in Sub Saharan Africa, where mobile phone technology has been used as an effective substitute for often weak and unstructured State mechanisms such as faulty infrastructure, underdeveloped systems of banking and inferior telecommunication networks.[10]

For example, a recent study presented at the Data for Development session at the NetMob Conference at MIT used mobile phone data to analyze the impact of opening a new toll highway in Dakar, Senegal on human mobility, particularly how people commute to work in the metropolitan area. ^{^[11]} A huge investment, the improved infrastructure is expected to result in a significant increase of people in and out of Dakar, along with the transport of essential goods. This would initiate rural development in the areas outside of Dakar and boost the value of land within the region.^{^[12]} The impact of the newly constructed highway can however only be analyzed effectively and accurately through the collection of this mobile phone data from actual commuters, on a real time basis.

Mobile phones technology is no longer used just for personal communication but has been transformed into an effective tool to secure employment opportunities, transfer money, determine stock options and assess the prices of various commodities.[13] This generates vast amounts of data about individuals and their interactions with the government and private sector companies. Internet Traffic is predicted to grow between 25 to 30 % in the next few years in North America, Western Europe and Japan but in Latin America, The Middle East and Africa this figure has been expected to touch close to 50%.[14] The bulk of this internet traffic can be traced back to mobile devices.

The potential applicability of Big Data for development at the most general level is the ability to provide an overview of the well being of a given population at a particular period of time.[15] This overcomes the relatively longer time lag that is prevalent with most other traditional forms of data collection. The analysis of this data has helped, to a large extent, uncover "digital smoke signals" - or inherent changes in the usage patterns of technological services, by individuals within communities.[16] This may act as an indicator of the changes in the underlying well-being of the community as a whole. This information about the well-being of a community derived from their usage of technology provides significantly relevant feedback to policy makers on the success or failure of particular schemes and can pin point changes that need to be made to status quo. [17]The hope is that this feedback delivered in real-time, would in turn lead to a more flexible and accessible system of international development, thus securing more measurable and sustained outcomes. [18]

The analysis of big data involves the use of advanced computational technology that can aid in the determination of trends, patterns and correlations within unstructured data so as to transform it into actionable information. It is hoped that this in addition to the human perspective and experience afforded to the process could enable decision makers to rely upon information that is both reliable and up to date to formulate durable and self-sustaining development policies.

The availability of raw data has to be adequately complemented with intent and a capacity to use it effectively. To this effect, there is an emerging volume of literature that seeks to characterize the primary sources of this Big Data as sharing certain easily distinguishable features. Firstly, it is digitally generated and can be stored in a binary format, thus making it susceptible to requisite manipulation by computers attempting to engage in its interpretation. It is passively produced as a by-product of digital interaction and can be automatically extracted for the purpose of continuous analysis. It is also geographically traceable within a predetermined time period. It is however important to note that "real time" does not necessarily refer to information occurring instantly but is reflective of the relatively short time in which the information is produced and made available thus making it relevant within the requisite timeframe. This allows efficient responsive action to be taken in a short span of time thus creating a feedback loop. [19]

In most cases the granularity of the data is preferably sought to be expanded over a larger spatial context such as a village or a community as opposed to an individual simply because this affords an adequate recognition of privacy concerns and the lack of definitive consent of the individuals in the extraction of this data. In order to ease the process of determination of this data, the UN Global Pulse has developed taxonomy of sorts to assess the types of data sources that are relevant to utilizing this information for development purposes.[20] These include the following sources;

Data Exhaust or the digital footprint left behind by individuals' use of technology for service oriented tasks such as web purchases, mobile phone transactions and real time information collected by UN agencies to monitor their projects such as levels of food grains in storage units, attendance in schools etc.

Online Information which includes user generated content on the internet such as news, blog entries and social media interactions which may be used to identify trends in human desires, perceptions and needs.

Physical sensors such as satellite or infrared imagery of infrastructural development, traffic patterns, light emissions and topographical changes, thus enabling the remote sensing of changes in human activity over a period of time.

Citizen reporting or crowd sourced data , which includes information produced on hotlines, mobile based surveys, customer generated maps etc. Although a passive source of data collection, this is a key instrument in assessing the efficacy of action oriented plans taken by decision makers.

The capacity to analyze this big data is hinged upon the reliance placed on technologically advanced processes such as powerful algorithms which can synthesize the abundance of raw data and break down the information enabling the identification of patterns and correlations. This process would rely on advanced visualization techniques such "sense-making tools"[21]

The identification of patterns within this data is carried out through a process of instituting a common framework for the analysis of this data. This requires the creation of a specific lexicon that would help tag and sort the collected data. This lexicon would specify what type of information is collected and who it is interpreted and collected by, the observer or the reporter. It would also aid in the determination of how the data is acquired and the qualitative and quantitative nature of the data. Finally, the spatial context of the data and the time frame within which it was collected constituting the aspects of where and when would be taken into consideration. The data would then be analyzed through a process of Filtering, Summarizing and Categorizing the data by transforming it into an appropriate collection of relevant indicators of a particular population demographic. [22]

The intensive mining of predominantly socioeconomic data is known as "reality mining" [23] and this can shed light on the processes and interactions that are reflected within the data. This is carried out via a tested three fold process. Firstly, the " Continuous Analysis over the streaming of the data", which involves the monitoring and analyzing high frequency data streams to extract often uncertain raw data. For example, the systematic gathering of the prices of products sold online over a period of time. Secondly, "The Online digestion of semi structured data and unstructured data", which includes news articles, reviews of services and products and opinion polls on social media that aid in the determination of public perception, trends and contemporary events that are generating interest across the globe. Thirdly, a 'Real-time Correlation of streaming data with slowly accessible historical data repositories,' which refers to the "mechanisms used for correlating and integrating data in real-time with historical records."[24] The purpose of this stage is to derive a contextualized perception of personalized information that seeks to add value to the data by providing a historical context to it. Big Data for development purposes would make use of a combination of these depending on the context and need.

(i) Policy Formulation

The world today has become increasingly volatile in terms of how the decisions of certain countries are beginning to have an impact on vulnerable communities within entirely different nations. Our global economy has become infinitely more susceptible to fluctuating conditions primarily because of its interconnectivity hinged upon transnational interdependence. The primordial instigators of most of these changes, including the nature of harvests, prices of essential commodities, employment structures and capital flows, have been financial and environmental disruptions. [25] According to the OECD, " Disruptive shocks to the global economy are likely to become more frequent and cause greater economic and social hardship. The economic spillover effects of events like the financial crisis or a potential pandemic will grow due to the increasing interconnectivity of the global economy and the speed with which people, goods and data travel."[26]

The local impacts of these fluctuations may not be easily visible or even traceable but could very well be severe and long lasting. A vibrant literature on the vulnerability of communities has highlighted the impacts of these shocks on communities often causing children to drop out of school, families to sell their productive assets, and communities to place a greater reliance on state rations.[27] These vulnerabilities cannot be definitively discerned through traditional systems of monitoring and information collection. The evidence of the effects of these shocks often take too long to reach decision makers; who are unable to formulate effective policies without ascertaining the nature and extent of the hardships suffered by these in a given context. The existing early warning systems in place do help raise flags and draw attention to the problem but their reach is limited and veracity compromised due to the time it takes to extract and collate this information through traditional means. These traditional systems of information collection are difficult to implement within rural impoverished areas and the data collected is not always reliable due to the significant time gap in its collection and subsequent interpretation. Data collected from surveys does provide an insight into the state of affairs of communities across demographics but this requires time to be collected, processed, verified and eventually published. Further, the expenses incurred in this process often prove to be difficult to offset.

The digital revolution therefore provides a significant opportunity to gain a richer and deeper insight into the very nature and evolution of the human experience itself thus affording a more legitimate platform upon which policy deliberations can be articulated. This data driven decision making, once the monopoly of private institutions such as The World Economic Forum and The McKinsey Institute [28] has now emerged at the forefront of the public policy discourse. Civil society has also expressed an eagerness to be more actively involved in the collection of real-time data after having perceived its benefits. This is evidenced by the emergence of 'crowd sourcing'[29] and other 'participatory sensing' [30] efforts that are founded upon the commonalities shared by like minded communities of individuals. This is being done on easily accessible platforms such as mobile phone interfaces, hand-held radio devices and geospatial technologies. [31]

The predictive nature of patterns identifiable from big data is extremely relevant for the purpose of developing socio-economic policies that seek to bridge problem-solution gaps and create a conducive environment for growth and development. Mobile phone technology has been able to quantify human behavior on an unprecedented scale.[32] This includes being able to detect changes in standard commuting patterns of individuals based on their employment status[33] and estimating a country's GDP in real-time by measuring the nature and extent of light emissions through remote sensing. [34]

A recent research study has concluded that "due to the relative frequency of certain queries being highly correlated with the percentage of physician visits in which individuals present influenza symptoms, it has been possible to accurately estimate the levels of influenza activity in each region of the United States, with a reporting lag of just a day." Online data has thus been used as a part of syndromic surveillance efforts also known as infodemiology. [35] The US Centre for Disease Control has concluded that mining vast quantities of data through online health related queries can help detect disease outbreaks " before they have been confirmed through a diagnosis or a laboratory confirmation." [36] Google trends works in a similar way.

Another public health monitoring system known as the Healthmap project compiles seemingly fragmented data from news articles, social media, eye-witness reports and expert discussions based on validated studies to "achieve a unified and comprehensive view of the current global state of infectious diseases" that may be visualized on a map. [37]

Big Data used for development purpose can reduce the reliance on human inputs thus narrowing the room for error and ensuring the accuracy of information collected upon which policy makers can base their decisions.

(ii) Advocacy and Social Change

Due to the ability of Big Data to provide an unprecedented depth of detail on particular issues, it has often been used as a vehicle of advocacy to highlight various issues in great detail. This makes it possible to ensure that citizens are provided with a far more participative experience, capturing their attention and hence better communicating these problems. Numerous websites have been able to use this method of crowd sourcing to broadcast socially relevant issues[38]. Moreover, the massive increase in access to the internet has dramatically improved the scope for activism through the use of volunteered data due to which advocates can now collect data from volunteers more effectively and present these issues in various forums. Websites like Ushahidi[39] and the Black Monday Movement [40] being prime examples of the same. These platforms have championed various causes, consistently exposing significant social crises' that would otherwise go unnoticed.

The Ushahidi application used crowd sourcing mechanisms in the aftermath of the Haiti earthquake to set up a centralized messaging system that allowed mobile phone users to provide information on injured and trapped people.[41] An analysis of the data showed that the concentration of text messages was correlated with the areas where there was an increased concentration of damaged buildings. [42] Patrick Meier of Ushahidi noted "These results were evidence of the system's ability to predict, with surprising accuracy and statistical significance, the location and extent of structural damage post the earthquake." [43]

Another problem that data advocacy hopes to tackle, however, is that of too much exposure, with advocates providing information to various parties to help ensure that there exists no unwarranted digital surveillance and that sensitive advocacy tools and information are not used inappropriately. An interesting illustration of the same is The Tactical Technology Collective[44] that hopes to improve the use of technology by activists and various other political actors. The organization, through various mediums such as films, events etc. hopes to train activists regarding data protection and privacy awareness and skills among human rights activists. Additionally, Tactical Technology also assists in ensuring that information is used in an appealing and relevant manner by human rights activists and in the field of capacity building for the purposes of data advocacy.

Observed data such as mobile phone records generated through network operators as well as through the use of social media are beginning to embody an omnipotent role in the development of academia through detailed research. This is due to the ability of this data to provide microcosms of information within both contexts of finer granularity and over larger public spaces. In the wake of natural disasters, this can be extremely useful, as reflected by the work of Flowminder after the 2010 Haiti earthquake.[45] A similar string of interpretive analysis can be carried out in instances of conflict and crises over varying spans of time. Flowminder used the geospatial locations of 1.9 million subscriber identity modules in Haiti, beginning 42 days before the earthquake and 158 days after it. This information allowed researches to empirically determine the migration patterns of population post the earthquake and enabled a subsequent UNFPA household survey.[46] In a similar capacity, the UN Global Pulse is seeking to assist in the process of consultation and deliberation on the specific targets of the millennium development goals through a framework of visual analytics that represent the big data procured on each of the topics proposed for the post- 2015 agenda online.[47]

A recent announcement of collaboration between RTI International, a non-profit research organization and IBM research lab looks promising in its initiative to utilize big data analytics in schools within Mombasa County, Kenya.[48] The partnership seeks to develop testing systems that would capture data that would assist governments, non-profit organizations and private enterprises in making more informed decisions regarding the development of education and human resources within the region. Äs observed by Dr. Kamal Bhattacharya, The Vice President of IBM Research, "A significant lack of data on Africa in the past has led to misunderstandings regarding the history, economic performance and potential of the government." The project seeks to improve transparency and accountability within the schooling system in more than 100 institutions across the county. The teachers would be equipped with tablet devices to collate the data about students, classrooms and resources. This would allow an analysis of the correlation between the three aspects thus enabling better policy formulation and a more focused approach to bettering the school system. [49] This is a part of the United States Agency for International Development's Education Data for Decision Making (EdData II) project. According to Dr Kommy Weldemariam, Research Scientist , IBM Research, "… there has been a significant struggle in making informed decisions as to how to invest in and improve the quality and content of education within Sub-Saharan Africa. The Project would create a school census hub which would enable the collection of accurate data regarding performance, attendance and resources at schools. This would provide valuable insight into the building of childhood development programs that would significantly impact the development of an efficient human capital pool in the near future."[50]

A similar initiative has been undertaken by Apple and IBM in the development of the "Student Achievement App" which seeks to use this data for "content analysis of student learning". The Application as a teaching tool that analyses the data provided to develop actionable intelligence on a per-student basis." [51] This would give educators a deeper understanding of the outcome of teaching methodologies and subsequently enable better leaning. The impact of this would be a significant restructuring of how education is delivered. At a recent IBM sponsored workshop on education held in India last year , Katharine Frase, IBM CTO of Public Sector predicted that "classrooms will look significantly different within a decade than they have looked over the last 200 years."[52]

(iii) Access and the exchange of information

Big data used for development serves as an important information intermediary that allows for the creation of a unified space within which unstructured heterogeneous data can be efficiently organized to create a collaborative system of information. New interactive platforms enable the process of information exchange though an internal vetting and curation that ensures accessibility to reliable and accurate information. This encourages active citizen participation in the articulation of demands from the government, thus enabling the actualization of the role of the electorate in determining specific policy decisions.

The Grameen Foundation's AppLab in Kampala aids in the development of tools that can use the information from micro financing transactions of clients to identify financial plans and instruments that would be be more suitable to their needs.[53] Thus, through working within a community, this technology connects its clients in a web of information sharing that they both contribute to and access after the source of the information has been made anonymous. This allows the individual members of the community to benefit from this common pool of knowledge. The AppLab was able to identify the emergence of a new crop pest from an increase in online searches for an unusual string of search terms within a particular region. Using this as an early warning signal, the Grameen bank sent extension officers to the location to check the crops and the pest contamination was dealt with effectively before it could spread any further.[54]

(iv) Accountability and Transparency

Big data enables participatory contributions from the electorate in existing functions such as budgeting and communication thus enabling connections between the citizens, the power brokers and elites. The extraction of information and increasing transparency around data networks is also integral to building a self-sustaining system of data collection and analysis. However it is important to note that this information collected must be duly analyzed in a responsible manner. Checking the veracity of the information collected and facilitating individual accountability would encourage more enthusiastic responses from the general populous thus creating a conducive environment to elicit the requisite information. The effectiveness of the policies formulated by relying on this information would rest on the accuracy of such information.

An example of this is Chequeado, a non-profit Argentinean media outlet that specializes in fact-checking. It works on a model of crowd sourcing information on the basis of which it has fact checked everything from the live presidential speech to congressional debates that have been made open to the public. [55] It established a user friendly public database, DatoCHQ, in 2014 which allowed its followers to participate in live fact-checks by sending in data, which included references, facts, articles and questions, through twitter. [56] This allowed citizens to corroborate the promises made by their leaders and instilled a sense of trust in the government.

III. Big Data and Smart Cities in the Global South

Smart cities have become a buzzword in South Asia, especially after the Indian government led by Prime Minister Narendra Modi made a commitment to build 100 smart cities in India[57]. A smart city is essentially designed as a hub where the information and communication technologies (ICT) are used to create feedback loops with an almost minimum time gap. In traditional contexts, surveys carried out through a state sponsored census were the only source of systematic data collection. However these surveys are long drawn out processes that often result in a drain on State resources. Additionally, the information obtained is not always accurate and policy makers are often hesitant to base their decisions on this information. The collection of data can however be extremely useful in improving the functionality of the city in terms of both the 'hard' or physical aspects of the infrastructural environment as well as the 'soft' services it provides to citizens. One model of enabling this data collection, to this effect, is a centrally structured framework of sensors that may be able to determine movements and behaviors in real-time, from which the data obtained can be subsequently analyzed. For example, sensors placed under parking spaces at intersections can relay such information in short spans of time. South Korea has managed to implement a similar structure within its smart city, Songdo.[58]

Another approach to this smart city model is using crowd sourced information through apps, either developed by volunteers or private conglomerates. These allow for the resolving of specific problems by organizing raw data into sets of information that are attuned to the needs of the public in a cohesive manner. However, this system would require a highly structured format of data sets, without which significantly transformational result would be difficult to achieve.[59]

There does however exist a middle ground, which allows the beneficiaries of this network, the citizens, to take on the role of primary sensors of information. This method is both cost effective and allows for an experimentation process within which an appropriate measure of the success or failure of the model would be discernible in a timely manner. It is especially relevant in fast growing cities that suffer congestion and breakdown of infrastructure due to the unprecedented population growth. This population is now afforded with the opportunity to become a part of the solution.

The principle challenge associated with extracting this Big Data is its restricted access. Most organizations that are able to collect this big data efficiently are private conglomerates and business enterprises, who use this data to give themselves a competitive edge in the market, by being able to efficiently identify the needs and wants of their clientele. These organizations are reluctant to release information and statistics because they fear it would result in them losing their competitive edge and they would consequently lose the opportunity to benefit monetarily from the data collected. Data leaks would also result in the company getting a bad name and its reputation could be significantly hampered. Despite the individual anonymity, the transaction costs incurred in ensuring the data of their individual customers is protected is often an expensive process. In addition to this there is a definite human capital gap resulting from the significant lack of scientists and analysts to interpret raw data transmitted across various channels.

(i) Big Data in Urban Planning

Urban planning would require data that is reflective of the land use patterns of communities, combined with their travel descriptions and housing preferences. The mobility of individuals is dependent on their economic conditions and can be determined through an analysis of their purchases, either via online transactions or from the data accumulated by prominent stores. The primary source of this data is however mobile phones, which seemed to have transcend economic barriers. Secondary sources include cards used on public transport such as the Oyster card in London and the similar Octopus card used in Hong Kong. However, in most developing countries these cards are not available for public transport systems and therefore mobile network data forms the backbone of data analytics. An excessive reliance on the data collected through Smart phones could however be detrimental, especially in developing countries, simply because the usage itself would most likely be concentrated amongst more economically stable demographics and the findings from this data could potentially marginalize the poor.[60]

Mobile network big data (MNBD) is generated by all phones and includes CDRs, which are obtained from calls or texts that are sent or received, internet usage, topping up a prepaid value and VLR or Visitor Location Registry data which is generated whenever the phone is question has power. It essentially communicates to the Base Transceiver Stations (BSTs) that the phone is in the coverage area. The CDR includes records of calls made, duration of the call and information about the device. It is therefore stored for a longer period of time. The VLR data is however larger in volume and can be written over. Both VLR and CDR data can provide invaluable information that can be used for urban planning strategies. [61] LIRNEasia, a regional policy and regulation think-tank has carried out an extensive study demonstrating the value of MNBD in SriLanka.[62] This has been used to understand and sometimes even monitor land use patterns, travel patterns during peak and off seasons and the congregation of communities across regions. This study was however only undertaken after the data had been suitably pseudonymised.[63] The study revealed that MNBD was incredibly valuable in generating important information that could be used by policy formulators and decision makers, because of two primary characteristics. Firstly, it comes close to a comprehensive coverage of the demographic within developing countries, thus using mobile phones as sensors to generate useful data. Secondly, people using mobile phones across vast geographic areas reflect important information regarding patterns of their travel and movement. [64]

MNBD allows for the tracking and mapping of changes in population densities on a daily basis, thus identifying 'home' and 'work' locations, informing policy makers of population congestion so that thy may be able to formulate policies with respect to easing this congestion. According to Rohan Samarajiva, founding chair of LIRNEasia, "This allows for real-time insights on the geo-spatial distribution of population, which may be used by urban planners to create more efficient traffic management systems."^{^[65]} This can also be used for the developmental economic policies. For example, the northern region of Colombo, a region inhabited by the low income families shows a lower population density on weekdays. This is reflective of the large numbers travelling to southern Colombo for employment. ^{^[66]}Similarly, patterns of land use can be ascertained by analyzing the various loading patterns of base stations. Building on the success of the Mobile Data analysis project in SriLanka LIRNEasia plans to collaborate with partners in India and Bangladesh to assimilate real time information about the behavioral tendencies of citizens, using which policy makers may be able to make informed decisions. When this data is combined with user friendly virtual platforms such as smartphone Apps or web portals, it can also help citizens make informed choices about their day to day activities and potentially beneficial long term decisions. ^{^[67]}

Challenges of using Mobile Network Data

Mobile networks invest significant sums of money in obtaining information regarding usage patterns of their services. Consequently, they may use this data to develop location based advertizing. In this context, there is a greater reluctance to share data for public purposes. Allowing access to one operator's big data by another could result in significant implications on the other with respect to the competitive advantage shared by the operator. A plausible solution to this conundrum is the accumulation of data from multiple sources without separating or organizing it according to the source it originates from. There is thus a lesser chance of sensitive information of one company being used by another. However, even operators do have concerns about how the data would be handled before this "mashing up" occurs and whether it might be leaked by the research organization itself. LIRNEasia used comprehensive non-disclosure agreements to ensure that the researchers who worked with the data were aware of the substantial financial penalties that may be imposed on them for data breaches. The access to the data was also restricted. [68]

Another line of argumentation advocates for the open sharing of data. A recent article in the Economist has articulated this in the context of the Ebola outbreak in West Africa. " Releasing the data, though, is not just a matter for firms since people's privacy is involved. It requires governmental action as well. Regulators in each affected country would have to order operators to make their records accessible to selected researchers, who through legal agreements would only be allowed to use the data in a specific manner. For example, Orange, a major mobile phone network operator has made millions of CDRs from Senegal and The Ivory Coast available for researchers for their use under its Data Development Initiative. However the Political will amongst regulators and Network operators to do this seems to be lacking."[69]

It would therefore be beneficial for companies to collaborate with the customers who create the data and the researchers who want to use it to extract important insights. This however would require the creation of and subsequent adherence to self regulatory codes of conduct. [70] In addition to this cooperation between network operators will assist in facilitating the transference of the data of their customers to research organizations. Sri Lanka is an outstanding example of this model of cooperation which has enabled various operators across spectrums to participate in the mobile-money enterprise.[71]

(ii) Big Data and Government Delivery of Services and Functions

The analysis of Data procured in real time has proven to be integral to the formulation of policies, plans and executive decisions. Especially in an Asian context, Big data can be instrumental in urban development, planning and the allocation of resources in a manner that allows the government to keep up with the rapidly growing demands of an empowered population whose numbers are on an exponential rise. Researchers have been able to use data from mobile networks to engage in effective planning and management of infrastructure, services and resources. If, for example, a particular road or highway has been blocked for a particular period of time an alternative route is established before traffic can begin to build up creating a congestion, simply through an analysis of information collected from traffic lights, mobile networks and GPS systems.[72]

There is also an emerging trend of using big data for state controlled services such as the military. The South Korean Defense Minister Han Min Koo, in his recent briefing to President Park Geun-hye reflected on the importance of innovative technologies such as Big Data solutions. [73]

The Chinese government has expressed concerns regarding data breaches and information leakages that would be extremely dangerous given the exceeding reliance of governments on big data. A security report undertaken by Qihoo 360, China's largest software security provider established that 2,424 of the 17,875 Web security loopholes were on government websites. Considering the blurring line between government websites and external networks, it has become all the more essential for authorities to boost their cyber security protections.[74]

The Japanese government has considered investing resources in training more data scientists who may be able to analyze the raw data obtained from various sources and utilize requisite techniques to develop an accurate analysis. The Internal Affairs and Communication Ministry planned to launch a free online course on big data, the target of which would be corporate workers as well as government officials.[75]

Data analytics is emerging as an efficient technique of monitoring the public transport management systems within Singapore. A recent collaboration between IBM, StarHub, The Land Transport Authority and SMRT initiated a research study to observe the movement of commuters across regions. ^{^[76]} This has been instrumental in revamping the data collection systems already in place and has allowed for the procurement of additional systems of monitoring.^{^[77]} The idea is essentially to institute a "black box" of information for every operational unit that allows for the relaying of real-time information from sources as varied as power switches, tunnel sensors and the wheels, through assessing patterns of noise and vibration. ^{^[78]}

In addition to this there are numerous projects in place that seek to utilize Big Data to improve city life. According to Carlo Ritti, Director of the MIT Senseable City Lab, "We are now able to analyze the pulse of a city from moment to moment. Over the past decade, digital technologies have begun to blanket our cities, forming the backbone of a large, intelligent infrastructure." ^{^[79]} The professor of Information Architecture and Founding Director of the Singapore ETH Centre, Gerhart Schmitt has observed that "the local weather has a major impact on the behavior of a population." In this respect the centre is engaged in developing a range of visual platforms to inform citizens on factors such as air quality which would enable individuals to make everyday choices such as what route to take when planning a walk or predict a traffic jam. ^{^[80]} Schmitt's team has also been able to arrive at a pattern that connects the demand for taxis with the city's climate. The amalgamation of taxi location with rainfall data has been able to help locals hail taxis during a storm. This form of data can be used in multiple ways allowing the visualization of temperature hotspots based on a "heat island" effect where buildings, cars and cooling units cause a rise in temperature. ^{^[81]}

Microsoft has recently entered into a partnership with the Federal University of Minas Gerais, one of the largest universities in Brazil to undertake a research project that could potentially predict traffic jams up to an hour in advance. ^{^[82]} The project attempts to analyze information from transport departments, road traffic cameras and drivers social network profiles to identify patterns that they could use to help predict traffic jams approximately 15 to 60 minutes before they actually happen.^{^[83]}

In anticipation of the increasing demand for professionals with requisite training in data sciences, the Malaysian Government has planned to increase the number of local data scientists from the present 80 to 1500 by 2020, through the support of the universities within the country.

IV. Big Data and the Private Sector in the Global South

Essential considerations in the operations of Big Data in the Private sector in the Asia Pacific region have been extracted by a comprehensive survey carried out by the Economist Intelligence Unit.[84] Over 500 executives across the Asia Pacific region were surveyed, from across industries representing a diverse range of functions. 69% of these companies had an annual turnover of over US $500m. The respondents were senior managers responsible for taking key decisions with regard to investment strategies and the utilization of big data for the same.

The results of the Survey conclusively determined that firms in the Asia Pacific region have had limited success with implementing Big Data Practices. A third of the respondents claimed to have an advanced knowledge of the utilization of big data while more than half claim to have made limited progress in this regard. Only 9% of the Firms surveyed cited internal barriers to implementing big data practices. This included a significant difficulty in enabling the sharing of information across boundaries. Approximately 40% of the respondents surveyed claimed they were unaware of big data strategies, even if they had in fact been in place simply because these had been poorly communicated to them. Almost half of the firms however believed that big data plays an important role in the success of the firm and that it can contribute to increasing revenue by 25% or more.

Numerous obstacles in the adoption of big data were cited by the respondents. These include the lack of suitable software to interpret the data and the lack of in-house skills to analyze the data appropriately. In addition to this, the lack of willingness on the part of various departments to share their data for the fear of a breach or leak was thought to be a major hindrance. This combined with a lack of communication between the various departments and exceedingly complicated reports that cannot be analyzed given the limited resources and lack of human capital qualified enough to carry out such an analysis, has resulted in an indefinite postponement of any policy propounding the adoption of big data practices.

Over 59% of the firms surveyed agreed that collaboration is integral to innovation and that information silos are a huge hindrance within a knowledge based economy. There is also a direct correlation between the size of the company and its progress in adopting big data, with larger firms adopting comprehensive strategies more frequently than smaller ones. A major reason for this is that large firms with substantially greater resources are able to actualize the benefits of big data analytics more efficiently than firms with smaller revenues. These businesses which have advanced policies in place outlining their strategies with respect to their reliance on big data are also more likely to communicate these strategies to their employees to ensure greater clarity in the process.

The use of big data was recently voted as the "best management practice" of the past year according to a cumulative ranking published by Chief Executive China Magazine, a Trade journal published by Global Sources on 13th January, 2015 in Beijing. The major benefit cited was the real-time information sourced from customers, which allows for direct feedback from clients when making decisions regarding changes in products or services. [85]

A significant contributor to the lack of adequate usage of data analytics is the belief that a PhD is a prerequisite for entering the field of data science. This misconception was pointed out by Richard Jones, vice president of Cloudera in the Australia, New Zealand and the Asean region. Cloudera provides businesses with the requisite professional services that they may need to effectively utilize Big Data. This includes a combination of the necessary manpower, technology and consultancy services.^{^[86]} Deepak Ramanathan, the chief technology officer, SAS Asia Pacific believes that this skill gap can be addressed by forming data science teams within both governments and private enterprises. These teams could comprise of members with statistical, coding and business skills and allow them to work in a collaborative manner to address the problem at hand.^{^[87]} SAS is an Enterprise Software Giant that creates tools tailored to suit business users to help them interpret big data. Eddie Toh, the planning and marketing manager of Intel's data center platform believes that businesses do not necessarily need data scientists to be able to use big data analytics to their benefit and can in fact outsource the technical aspects of the interpretation of this data as and when required.^{^[88]}

The analytical team at Dell has forged a partnership with Brazilian Public Universities to facilitate the development of a local talent pool in the field of data analytics. The Instituto of Data Science (IDS) will provide training methodologies for in person or web based classes. ^{^[89]} The project is being undertaken by StatSoft, a subsidiary of Dell that was acquired by the technology giant last year. ^{^[90]}

V. Conclusion

There have emerged numerous challenges in the analysis and interpretation of Big Data. While it presents an extremely engaging opportunity, which has the potential to transform the lives of millions of individuals, inform the private sector and influence government, the actualization of this potential requires the creation of a sustainable foundational framework ; one that is able to mitigate the various challenges that present themselves in this context.

A colossal increase in the rate of digitization has resulted in an unprecedented increment in the amount of Big Data available, especially through the rapid diffusion cellular technology. The importance of mobile phones as a significant source of data, especially in low income demographics cannot be overstated. This can be used to understand the needs and behaviors of large populations, providing an in depth insight into the relevant context within which valuable assessments as to the competencies, suitability and feasibilities of various policy mechanisms and legal instruments can be made. However, this explosion of data does have a lasting impact on how individuals and organizations interact with each other, which might not always be reflected in the interpretation of raw data without a contextual understanding of the demographic. It is therefore vital to employ the appropriate expertise in assessing and interpreting this data. The significant lack of a human resource to capital to analyze this information in an accurate manner poses a definite challenge to its effective utilization in the Global South.

The legal and technological implications of using Big Data are best conceptualized within the deliberations on protecting the privacy of the contributors to this data. The primary producers of this information, from across platforms, are often unaware that they are in fact consenting to the subsequent use of the data for purposes other than what was intended. For example people routinely accept terms and conditions of popular applications without understanding where or how the data that they inadvertently provide will be used.[91] This is especially true of media generated on social networks that are increasingly being made available on more accessible platforms such as mobile phones and tablets. Privacy has and always will remain an integral pillar of democracy. It is therefore essential that policy makers and legislators respond effectively to possible compromises of privacy in the collection and interpretation of this data through the institution of adequate safeguards in this respect.

Another challenge that has emerged is the access and sharing of this data. Private corporations have been reluctant to share this data due to concerns about potential competitors being able to access and utilize the same. In addition to this, legal considerations also prevent the sharing of data collected from their customers or users of their services. The various technical challenges in storing and interpreting this data adequately also prove to be significant impediments in the collection of data. It is therefore important that adequate legal agreements be formulated in order to facilitate a reliable access to streams of data as well as access to data storage facilities to accommodate for retrospective analysis and interpretation.

In order for the use of Big Data to gain traction, it is important that these challenges are addressed in an efficient manner with durable and self-sustaining mechanisms of resolving significant obstructions. The debates and deliberations shaping the articulation of privacy concerns and access to such data must be supported with adequate tools and mechanisms to ensure a system of "privacy-preserving analysis." The UN Global Pulse has put forth the concept of data philanthropy to attempt to resolve these issues, wherein " corporations [would] take the initiative to anonymize (strip out all personal information) their data sets and provide this data to social innovators to mine the data for insights, patterns and trends in realtime or near realtime."[92]

The concept of data philanthropy highlights particular challenges and avenues that may be considered for future deliberations that may result in specific refinements to the process.

One of the primary uses of Big Data, especially in developing countries is to address important developmental issues such as the availability of clean water, food security, human health and the conservation of natural resources. Effective Disaster management has also emerged as one of the key functions of Big Data. It therefore becomes all the more important for organizations to assess the information supply chains pertaining to specific data sources in order to identify and prioritize the issues of data management. [93] Data emerging from different contexts, across different sources may appear in varied compositions and would differ significantly across economic demographics. The Big Data generated from certain contexts would be inefficient due to the unavailability of data within certain regions and the resulting studies affecting policy decisions should take into account this discrepancy. This data unavailability has resulted in a digital divide which is especially prevalent in the global south. [94]

Appropriate analysis of the Big Data generated would provide a valuable insight into the key areas and inform policy makers with respect to important decisions. However, it is necessary to ensure that the quality of this data meets a specific standard and appropriate methodological processes have been undertaken to interpret and analyze this data. The government is a key actor that can shape the ecosystem surrounding the generation, analysis and interpretation of big data. It is therefore essential that governments of countries across the global south recognize the need to collaborate with civic organizations as well technical experts in order to create appropriate legal frameworks for the effective utilization of this data.

[1] Onella, Jukka- Pekka. "Social Networks and Collective Human Behavior." UN Global Pulse. 10 Nov.2011. <http://www.unglobalpulse.org/node/14539>

[2] http://www.business2community.com/big-data/evaluating-big-data-predictive-analytics-01277835

[3] Ibid

[4] http://unglobalpulse.org/sites/default/files/BigDataforDevelopment-UNGlobalPulseJune2012.pdf

[5] Ibid, p.13, pp.5

[6] Kirkpatrick, Robert. "Digital Smoke Signals." UN Global Pulse. 21 Apr. 2011. <http://www.unglobalpulse.org/blog/digital-smoke-signals>

[7] Helbing, Dirk , and Stefano Balietti. "From Social Data Mining to Forecasting Socio-Economic Crises." Arxiv (2011) 1-66. 26 Jul 2011 http://arxiv.org/pdf/1012.0178v5.pdf.

[8] Manyika, James, Michael Chui, Brad Brown, Jacques Bughin, Richard Dobbs, Charles Roxburgh andAngela H. Byers. "Big data: The next frontier for innovation, competition, and productivity." McKinsey

Global Institute (2011): 1-137. May 2011.

[9] "World Population Prospects, the 2010 Revision." United Nations Development Programme. <http://esa.un.org/unpd/wpp/unpp/panel_population.htm>

[10] Mobile phone penetration, measured by Google, from the number of mobile phones per 100 habitants, was 96% in Botswana, 63% in Ghana, 66% in Mauritania, 49% in Kenya, 47% in Nigeria, 44% in Angola, 40% in Tanzania (Source: Google Fusion Tables)

[11] http://www.brookings.edu/blogs/africa-in-focus/posts/2015/04/23-big-data-mobile-phone-highway-sy

[12] Ibid

[13] <http://www.google.com/fusiontables/Home/>

[14] "Global Internet Usage by 2015 [Infographic]." Alltop. <http://holykaw.alltop.com/global-internetusage-by-2015-infographic?tu3=1>

[15] Kirkpatrick, Robert. "Digital Smoke Signals." UN Global Pulse. 21 Apr. 2011 <http://www.unglobalpulse.org/blog/digital-smoke-signals>

[16] Ibid

[17] Ibid

[18] Ibid

[19] Goetz, Thomas. "Harnessing the Power of Feedback Loops." Wired.com. Conde Nast Digital, 19 June 2011. <http://www.wired.com/magazine/2011/06/ff_feedbackloop/all/1>.

[20] Kirkpatrick, Robert. "Digital Smoke Signals." UN Global Pulse. 21 Apr. 2011. <http://www.unglobalpulse.org/blog/digital-smoke-signals>

[21] Bollier, David. The Promise and Peril of Big Data. The Aspen Institute, 2010. <http://www.aspeninstitute.org/publications/promise-peril-big-data>

[22] Ibid

[23] Eagle, Nathan and Alex (Sandy) Pentland. "Reality Mining: Sensing Complex Social Systems",Personal and Ubiquitous Computing, 10.4 (2006): 255-268.

[24] Kirkpatrick, Robert. "Digital Smoke Signals." UN Global Pulse. 21 Apr. 2011. <http://www.unglobalpulse.org/blog/digital-smoke-signals>

[25] OECD, Future Global Shocks, Improving Risk Governance, 2011

[26] "Economy: Global Shocks to Become More Frequent, Says OECD." Organisation for Economic Cooperationand Development. 27 June. 2011.

[27] Friedman, Jed, and Norbert Schady. How Many More Infants Are Likely to Die in Africa as a Result of the Global Financial Crisis? Rep. The World Bank <http://siteresources.worldbank.org/INTAFRICA/Resources/AfricaIMR_FriedmanSchady_060209.pdf>

[28] Big data: The next frontier for innovation, competition, and productivity. McKinsey Global Institute,June 2011<http://www.mckinsey.com/mgi/publications/big_data/pdfs/MGI_big_data_full_report.pdf>

[29] The word "crowdsourcing" refers to the use of non-official actors ("the crowd") as (free) sources of information, knowledge and services, in reference and opposition to the commercial practice of

outsourcing. "

[30] Burke, J., D. Estrin, M. Hansen, A. Parker, N. Ramanthan, S. Reddy and M.B. Srivastava. ParticipatorySensing. Rep. Escholarship, University of California, 2006. <http://escholarship.org/uc/item/19h777qd>.

[31] "Crisis Mappers Net-The international Network of Crisis Mappers." <http://crisismappers.net>, http://haiti.ushahidi.com and Goldman et al., 2009

[32] Alex Pentland cited in "When There's No Such Thing As Too Much Information". The New York Times.23 Apr. 2011<http://www.nytimes.com/2011/04/24/business/24unboxed.html?_r=1&src=tptw>.

[33] Nathan Eagle also cited in "When There's No Such Thing As Too Much Information". The New YorkTimes. 23 Apr. 2011. <http://www.nytimes.com/2011/04/24/business/24unboxed.html?_r=1&src=tptw>.

[34] Helbing and Balietti. "From Social Data Mining to Forecasting Socio-Economic Crisis."

[35] Eysenbach G. Infodemiology: tracking flu-related searches on the Web for syndromic surveillance.AMIA (2006)<http://yi.com/home/EysenbachGunther/publications/2006/eysenbach2006cinfodemiologyamia proc.pdf>

[36] Syndromic Surveillance (SS)." Centers for Disease Control and Prevention. 06 Mar. 2012.<http://www.cdc.gov/ehrmeaningfuluse/Syndromic.html>.

[37] Health Map <http://healthmap.org/en/>

[38] see www.detective.io

[39] www.ushahidi.com

[40] www.facebook.com/BlackMondayMovement

[41] Ushahidi is a nonprofit tech company that was developed to map reports of violence in Kenya followingthe 2007 post-election fallout. Ushahidi specializes in developing "free and open source software for

information collection, visualization and interactive mapping." <http://ushahidi.com>

[42] Conducted by the European Commission's Joint Research Center against data on damaged buildingscollected by the World Bank and the UN from satellite images through spatial statistical techniques.

[43] www.ushahidi.com

[44] See https://tacticaltech.org/

[45] see www. flowminder.org

[46] Ibid

[47] http://post2015.unglobalpulse.net/

[48] http://allafrica.com/stories/201507151726.html

[49] Ibid

[50] Ibid

[51] http://www.computerworld.com/article/2948226/big-data/opinion-apple-and-ibm-have-big-data-plans-for-education.html

[52] Ibid

[53] http://www.grameenfoundation.org/where-we-work/sub-saharan-africa/uganda

[54] Ibid

[55] http://chequeado.com/

[56] http://datochq.chequeado.com/

[57] Times of India (2015): "Chandigarh May Become India's First Smart City," 12 January, http://timesofi ndia.indiatimes.com/india/Chandigarh- may-become-Indias-fi rst-smart-city/articleshow/ 45857738.cms

[58] http://www.cisco.com/web/strategy/docs/scc/ioe_citizen_svcs_white_paper_idc_2013.pdf

[59] Townsend, Anthony M (2013): Smart Cities: Big Data, Civic Hackers and the Quest for a New Utopia, New York: WW Norton.

[60] See "Street Bump: Help Improve Your Streets" on Boston's mobile app to collect data on roadconditions, http://www.cityofboston.gov/DoIT/ apps/streetbump.asp

[61] Mayer-Schonberger, V and K Cukier (2013): Big Data: A Revolution That Will Transform How We Live, Work, and Think, London: John Murray.

[62] http://www.epw.in/review-urban-affairs/big-data-improve-urban-planning.html

[63] Ibid

[64] Newman, M E J and M Girvan (2004): "Finding and Evaluating Community Structure in Networks,"Physical Review E, American Physical Society, Vol 69, No 2.

[65] http://www.sundaytimes.lk/150412/sunday-times-2/big-data-can-make-south-asian-cities-smarter-144237.html

[66] Ibid

[67] Ibid

[68] http://www.epw.in/review-urban-affairs/big-data-improve-urban-planning.html

[69] GSMA (2014): "GSMA Guidelines on Use of Mobile Data for Responding to Ebola," October, http:// www.gsma.com/mobilefordevelopment/wpcontent/ uploads/2014/11/GSMA-Guidelineson-

protecting-privacy-in-the-use-of-mobilephone- data-for-responding-to-the-Ebola-outbreak-_ October-2014.pdf

[70] An example of the early-stage development of a self-regulatory code may be found at http:// lirneasia.net/2014/08/what-does-big-data-sayabout- sri-lanka/

[71] See "Sri Lanka's Mobile Money Collaboration Recognized at MWC 2015," http://lirneasia. net/2015/03/sri-lankas-mobile-money-colloboration- recognized-at-mwc-2015/

[72] http://www.thedailystar.net/big-data-for-urban-planning-57593

[73] http://koreaherald.com , 19/01/2015

[74] http://www.news.cn/, 25/11/2014

[75] http://the-japan-news.com , 20/01/2015

[76] http://www.todayonline.com/singapore/can-big-data-help-tackle-mrt-woes

[77] Ibid

[78] Ibid

[79] http://edition.cnn.com/2015/06/24/tech/big-data-urban-life-singapore/

[80] Ibid

[81] Ibid

[82] http://venturebeat.com/2015/04/03/how-microsofts-using-big-data-to-predict-traffic-jams-up-to-an-hour-in-advance/

[83] Ibid

[84] https://www.hds.com/assets/pdf/the-hype-and-the-hope-summary.pdf

[85] http://www.news.cn , 14/01/2015

[86] http://www.techgoondu.com/2015/06/29/plugging-the-big-data-skills-gap/

[87] Ibid

[88] Ibid

[89] http://www.zdnet.com/article/dell-to-create-big-data-skills-in-brazil/

[90] Ibid

[91] Efrati, Amir. "'Like' Button Follows Web Users." The Wall Street Journal. 18 May 2011.

<http://online.wsj.com/article/SB10001424052748704281504576329441432995616.html>

[92] Krikpatrick, Robert. "Data Philanthropy: Public and Private Sector Data Sharing for Global Resilience."

UN Global Pulse. 16 Sept. 2011. <http://www.unglobalpulse.org/blog/data-philanthropy-public-privatesector-data-sharing-global-resilience>

[93] Laney D (2001) 3D data management: Controlling data volume, velocity and variety. Available at: http://blogs. gartner.com/doug-laney/files/2012/01/ad949-3D-DataManagement-Controlling-Data-Volume-Velocity-andVariety.pdf

[94] Boyd D and Crawford K (2012) Critical questions for Big Data: Provocations for a cultural, technological, and scholarly phenomenon. Information, Communication, & Society 15(5): 662-679.

For more details visit https://cis-india.org/internet-governance/blog/big-data-in-the-global-south-an-analysis

Privacy in Healthcare: Policy Guide

tanvi — 2014-08-31T15:18:12Z

The Health Policy Guide seeks to understand what are the legal regulations governing data flow in the health sector — particularly hospitals, and how are these regulations implemented. Towards this objective, the research reviews data practices in a variety of public and private hospitals and diagnostics labs. The research is based on legislation, case law, publicly available documents, and anonymous interviews.

Click to download the PDF (320 Kb)

Introduction

To this date, there exists no universally acceptable definition of the right to privacy. It is a continuously evolving concept whose nature and extent is largely context driven. There are numerous aspects to the right to privacy, each different from the other in terms of the circumstance in which it is invoked. Bodily privacy however, is to date, the most guarded facet of this vastly expansive right. The privacy over one’s own body including the organs, genetic material and biological functions that make up one’s health is an inherent right that does not; as in the case of other forms of privacy such as communication or transactional privacy, emanate from the State. It is a right that has its foundations in the Natural Law conceptions of The Right to Life, which although regulated by the State can at no point be taken away by it except under extreme circumstances of a superseding Right to Life of a larger number of people.

The deliberation leading to the construction of a universally applicable Right to Privacy has up until now however only been in terms of its interpretation as an extension of the Fundamental Right to Life and Liberty as guaranteed under Article 21 as well as the freedom of expression and movement under Articles 19(1)(a) and (b) of the Constitution of India. While this may be a valid interpretation, it narrows the ambit of the right as one that can only be exercised against the State. The Right to privacy however has much larger implications in spheres that are often removed from the State. There is thus an impending need to create an efficient and durable structure of Law and policy that regulates the protection of privacy in Institutions that may not always be agents of the State.

It is in this regard that the following analysis studies the existing conceptions of privacy in the Healthcare sector. It aims to study the existing mechanisms of privacy protection and their pragmatic application in everyday practices. Further, it determines definitive policy gaps in the existing framework and endeavors to provide effective recommendations to not only redress these shortcomings but also create a system that is efficient in its fulfillment of the larger objective of the actualization of the Right to Privacy at an individual, state and institutional level.

Purpose

The purpose of this research study is to formulate a comprehensive guide that maps the synthesis, structure and implementation of privacy regulations within the healthcare sector in India. It traces the domestic legislation pertaining to various aspects of the healthcare sector and the specific provisions of the law that facilitate the protection of the privacy of individuals who furnish their personal information as well as genetic material to institutions of healthcare, either for the purpose of seeking treatment or to contribute to research studies. It is however imperative that the nature and extent of the information collected be restricted through the establishment of requisite safeguards at an institutional level that percolate down to everyday practices of data collection, handling and storage within healthcare institutions. The study thus aims to collate the existing systems of privacy protection in the form of laws, regulations and guidelines and compare these with actual practices in government and private hospitals and diagnostic laboratories to determine whether these laws are in fact effective in meeting the required standards of privacy protection. Further, the study also broadly looks at International practices of privacy protection and offers recommendations to better the existing mechanisms of delimiting unnecessary intrusions on the privacy of patients.

Importance

The Indian Healthcare sector although at par with international standards in its methods of diagnosis, treatment and the use of contemporary technology, is still nascent in the nature and extent of its interaction with the Law. There are a number of aspects of healthcare that lie on the somewhat blurred line between the interest of the public and the sole right of the individual seeking treatment. One such aspect is the slowly evolving right to privacy. The numerous facets of this right have come to the fore largely through unique case laws that are reflective of a dynamic social structure, one that seeks to reconcile the socio economic rights that once governed society with individual interests that it has slowly come to realize. The right of an individual to disclose the nature of his disease, the liberty of a woman not to be compelled to undergo a blood test, the bodily autonomy to decide to bear children or not, the decisional privacy with regards to the termination of a pregnancy and the custodial rights of two individuals to their child are certain contentious aspects of healthcare that have constructed the porous interface between the right to privacy and the need for medical treatment. It is in this context that this study aims to delve into the existing basic structure of domestic legislation, case laws and regulations and their subsequent application in order to determine important gaps in the formulation of Law and Policy. The study thus aims to draw relevant conclusions to fill these gaps through recommendations sourced from international best practice in order to construct a broad framework upon which one can base future policy considerations and amendments to the existing law.

Methodology

This research study was undertaken in two major parts. The first part assesses domestic legislation and its efficacy in the current context. This is done through the determination of relevant provisions within the Act that are in consonance with the broader privacy principles as highlighted in the A.P Shah Committee report on Privacy Protection[1]. This part of the research paper is based on secondary sources, both in terms of books as well as online resources. The second part of the paper analyses the actual practices with regard to the assimilation, organization, use and storage of personal data as practiced in Government and Private hospitals and Diagnostic laboratories. Three Private hospitals, a prominent Government hospital and a Diagnostic laboratory were taken into consideration for this study. The information was provided by the concerned personnel at the medical records department of these institutions of healthcare through a survey conducted on the condition of anonymity. The information provided was analyzed and collated in accordance with the compliance of the practices of these institutions with the Principles of privacy envisioned in the Report of the Group of Experts on Privacy.

The Embodiment of Privacy Regulation within Domestic Legislation

This section of the study analyses the viability of an approach that takes into account the efficacy of domestic legislation in regulating practices pertaining to the privacy of individuals in the healthcare sector. This approach perceives the letter and spirit of the law as the foundational structure upon which internal practices, self regulation and the effective implementation of policy considerations that aim to create an atmosphere of effective privacy regulation take shape, within institutions that offer healthcare services. To this effect, domestic legislationthat provides for the protection of a patient’s privacy has been examined. The law has been further studied with respect to its tendency to percolate into the everyday practices, regulations and guidelines that private and government hospitals adhere to. The extent of its permeation into actual practice; in light of its efficacy in fulfilling the perambulatory objectives of ensuring safe and unobtrusive practices,within the construct of which a patient is allowed to recover and seek treatment, has also been examined.

The term ‘Privacy’ is used in a multitude of domestic legislations primarily in the context of the foundation of the fiduciary relationship between a doctor and a patient.This fiduciary relationship emanates from a reasonable expectation of mutual trust between the doctor and his patients and is established through the Indian Medical Council Act of 1952, specifically section 20(A) of the Act which lays down the code of ethics which a doctor must adhere to at all times. Privacy within the healthcare sector includes a number of aspects including but not limited to informational privacy (e.g., confidentiality, anonymity, secrecy and data security); physical privacy (e.g., modesty and bodily integrity); associational privacy (e.g. intimate sharing of death, illness and recovery); proprietary privacy (e.g., self-ownership and control over personal identifiers, genetic data, and body tissues); and decisional privacy (e.g., autonomy and choice in medical decision-making).

Privacy Violations stem from policy and information gaps: Violations in the healthcare sector that stem from policy formulation as well and implementation gaps[2] include the disclosure of personal health information to third parties without consent, inadequate notification to a patient of a data breach, unlimited or unnecessary collection of personal health data, collection of personal health data that is not accurate or relevant, the purpose of collecting data is not specified, refusal to provide medical records upon request by client, provision of personal health data to public health, research, and commercial uses without de-identification of data and improper security standards, storage and disposal. The disclosure of personal health information has the potential to be embarrassing, stigmatizing or discriminatory.[3] Furthermore, various goods such as employment, life, and medical insurance, could be placed at risk [4]if the flow of medical information were not restricted. ^{^[5]}

Disclosure of personal health information is permitted and does not amount to a violation of privacy in the following situations: 1) during referral, 2) when demanded by the court or by the police on a written requisition, 3) when demanded by insurance companies as provided by the Insurance Act when the patient has relinquished his rights on taking the insurance, and 4) when required for specific provisions of workmen's compensation cases, consumer protection cases, or for income tax authorities,^{^[6]} 5) disease registration, 6) communicable disease investigations, 7) vaccination studies, or 8) drug adverse event reporting. ^{^[7]}

The following domestic legislations have been studied and relevant provisions of the Act have been accentuated in order to analyse their compliance with the basic principles of privacy as laid out in the A.P Shah Committee report on Privacy.

Mental Health Act, 1987[8]
The Provisions under the Act pertaining to the protection of privacy of the patient have been examined. The principles embodied within the Act include aspects of the Law that determine the nature and extent of oversight exercised by the relevant authorities over the collection of information, the limitation on the collection of data and the restrictions on the disclosure of the data collected. The principle of oversight is embodied under the legislation within the provisions that allow for the inspection of records in psychiatric hospitals and nursing homes only by officers authorized by the State Government.^{^[9]} The limitation on the Collection of information is imposed by the Inspection of living conditionsby a psychiatrist and two social workers are on a monthly basis. This would include analyzing the living condition of every patient and the administrative processes of the psychiatric hospital and/or psychiatric nursing home. ^{^[10]}Additionally, Visitors must maintain a book regarding their observations and remarks.^{^[11]} Medical certificates may be issued by a doctor, containing information regarding the nature and degree of the mental disorder as reasons for the detention of a person in a psychiatric hospital or psychiatric nursing home. ^{^[12]}Lastly, the disclosure of personal records of any facility under this Act by inspecting officers is prohibited^{^[13]}

Pre-Conception and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994 ^{^[14]}
The Act was instituted in light of a prevalent public interest consideration of preventing female foeticide. However, it is imperative that the provision of the Act remain just shy of unnecessarily intrusive techniques and do not violate the basic human requirement of privacy in an inherently personal sphere. The procedure that a mother has to follow in order to avail of pre-natal diagnostic testing is mandatory consent of age, abortion history and family history. These conditions require a woman to reveal sensitive information concerning family history of mental retardation or physical deformities.[15] Aspecial concern for privacy and confidentiality should be exercised with regards to disclosure of genetic information. [16]

Medical Termination of Pregnancy Act, 1971 ^{^[17]}
Although, the right to an abortion is afforded to a woman within the construct of her inherent right to bodily privacy, decisional privacy (for e.g., autonomy and choice in medical decision-making) is not afforded to patients and their families with regards to determining the sex of the baby. The sections of the Act that have been examined lay down the provisions available within the Act to facilitate the protection of a woman’s right to privacy during the possible termination of a pregnancy. These include the principles pertaining to the choice and consent of the patient to undergo the procedure, a limit on the amount of information that can be collected from the patient, the prevention of disclosure of sensitive information and the security measures in place to prevent the unauthorized access to this information. The Medical Termination of Pregnancy Regulations, 2003 supplement the Act and provide relevant restrictions within every day practices of data collection use and storage in order to protect the privacy of patients. The Act mandates Written Consent of the patient in order to facilitate an abortion .Consent implies that the patient is aware of all her options, has been counselled about the procedure, the risks and post-abortion care.[18]. The Act prohibits the disclosure of matters relating to treatment for termination of pregnancy to anyone other than the Chief Medical Officer of the State. [19]The Register of women who have terminated their pregnancy, as maintained by the hospital, must be destroyed on the expiry of a period of five years from the date of the last entry.[20] The Act also emphasizes upon the security of information collected. The medical practitioner assigns a serial number for the woman terminating her pregnancy.[21]Additionally, the admission register is stored in safe custody of the head of the hospital. [22]

Indian Medical Council (Professional conduct, Etiquette and Ethics) Regulations, 2002 (Code of Ethics Regulations, 2002)
The Medical Council of India (MCI) Code of Ethics Regulations^{^[23]} sets the professional standards for medical practice. These provisions regulate the nature and extent of doctor patient confidentiality. It also establishes universally recognized norms pertaining to consent to a particular medical procedure and sets the institutionally acceptable limit for intrusive procedure or gathering excessively personal information when it is not mandatorily required for the said procedure. The provisions addressed under these regulations pertain to the Security of the information collected by medical practitioners and the nature of doctor patient confidentiality.

Physicians are obliged to protect the confidentiality of patients⁵during all stages of the procedure and with regard to all aspects of the information provided by the patient to the doctor, includinginformation relating to their personal and domestic lives. ^{^[24]}The only exception to this mandate of confidentiality is if the law requires the revelation of certain information, or if there is a serious and identifiable risk to a specific person and / or community ofa notifiable disease.

Ethical Guidelines for Biomedical Research on Human Subjects [25]
The provisions for the regulation of privacy pertaining to biomedical research include aspects of consent as well as a limitation on the information that may be collected and its subsequent use. The provisions of this act aim to regulate the protection of privacy during clinical trials and during other methods of research. The principal of informed consent is an integral part of this set of guidelines. ThePrivacy related information included in the participant/ patient information sheet includes: the choice to prevent the use of their biological sample, the extent to which confidentiality of records could be maintained and the consequences of breach of confidentiality, possible current and future uses of the biological material and of the data to be generated from the research and if the material is likely to be used for secondary purposes or would be shared with others, the risk of discovery of biologically sensitive information and publications, including photographs and pedigree charts.[26] The Guidelines require special concern for privacy and confidentiality when conducting genetic family studies. [27]The protection of privacy and maintenance of confidentiality, specifically surrounding the identity and records, is maintained whenusing the information or genetic material provided by participants for research purposes. ^{^[28]}The Guidelines require investigators to maintain confidentiality of epidemiological data due to the particular concern that some population based data may also have implications on issues like national security or public safety.[29]All documentation and communication of the Institutional Ethics Committee (IEC) must be dated, filed and preserved according to the written procedures.Data of individual participants can be disclosed in a court of law under the orders of the presiding judge, if there is a threat to a person’s life, communication to the drug registration authority regarding cases of severe adverse reaction and communication to the health authority if there is risk to public health.[30]

Insurance Regulatory and Development Authority (Third Party Administrators) Health Services Regulations, 2001
The provisions of the Act that have been addressed within the scope of the study regulate the practices of third party administrators within the healthcare sector so as to ensure their compliance with the basic principles of privacy.An exception to the maintenance and confidentiality of information confidentiality clause in the code of conduct, requires TPAs to provide relevant information to any Court of Law/Tribunal, the Government, or the Authority in the case of any investigation carried out or proposed to be carried out by the Authority against the insurance company, TPA or any other person or for any other reason.[31]In July 2010, the IRDA notified theInsurance Regulatory and Development Authority (Sharing of Database for Distribution of Insurance Products) Regulations [32]. These regulations restrict referral companies from providing details of their customers without their prior consent.[33]TPAs must maintain the confidentiality of the data collected by it in the course of its agreement and maintain proper records of all transactions carried out by it on behalf of an insurance company and are also required to refrain from trading information and the records of its business[34].TPA’s must keep records for a period of not less than three years.[35]

IDRA Guidelines on Outsourcing of Activities by Insurance Companies [36]
These guidelines require the insurer to take appropriate steps that require third party service providers protect confidential information of both the Insurer and its clients from intentional or inadvertent disclosure to unauthorized persons.[37]

Exceptions to the Protection of Privacy
The legal provisions with regard to privacy, confidentiality and secrecy are often superseded by Public Interest Considerations. The right to privacy, although recognized in the course of Indian jurisprudence and embodied within domestic legislation is often overruled prima facie when faced with situations or instances that involve a larger interest of a greater number of people. This policy is in keeping with India’s policy goals as a social welfare state to aid in the effectuation of its utilitarian ideals. This does not allow individual interest to at any point surpass the interest of the masses.

Epidemic Diseases Act, 1897 [38]
Implicit within this formulation of this Act is the assumption that in the case of infectious diseases, the right to privacy, of infected individuals must give way to the overriding interest of protecting public health.[39] This can be ascertained not only from the black letter of the Law but also from its spirit. Thus, in the absolute positivist as well as a more liberal interpretation, at the crux of the legislation lies the undeniable fundamental covenant of the preservation of public health, even at the cost of the privacy of a select few individuals [40].

Policy and Regulations

National Policy for Persons with Disabilities, 2006[41]
The following provisions of the Act provide for the incorporation of privacy considerations in prevalent practices with regard to persons with disabilities. The National Sample Survey Organization collects the following information on persons with disabilities: the socio- economic and cultural context, cause of disabilities, early childhood education methodologies and all matters connected with disabilities, at least once in five years.[42]This data is collected by non-medical investigators. [43]There is thus an inherent limit on the information collected. Additionally, this information is used only for the purpose for which it has been collected.

The Special Employment Exchange, as established under The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 Act, collects and furnishes information in registers, regarding provisions for employment. Access to such data is limited to any person who is authorized by the Special Employment Exchange as well as persons authorized by general or special order by the Government, to access, inspect, question and copy any relevant record, document or information in the possession of any establishment. [44] When conducting research on persons with disabilities consent is required from the individual or their family members or caregivers.[45]

HIV Interventions
In 1992, the Government of India instituted the National AIDS Control Organization (NACO) for the prevention and control of AIDS. NACO aims to control the spread of HIV in India through the implementation of Targeted Interventions (TIs) for most at risk populations (MARPs) primarily, sex workers, men having sex with men and people who inject drugs.[46]The Targeted Interventions (TIs) system of testing under this organization has however raised numerous concerns about relevant policy gaps in the maintenance of the confidentiality and privacy of persons living with HIV/ AIDS. The shortcomings in the existing policy framework include: The Lack of a limitation and subsequent confidentiality in the amount of Information collected. Project staff inTIsrecordthe name, address and other contact information of MARPs and share this data with Technical Support Unit and State AIDS Control Societies.[47] Proof of address and identity documents are required to get enrolled in government ART programs.[48]Peer-educators operate under a system known as line-listing, used to make referrals and conduct follow-ups. Peer-educators have to follow-up with those who have not gone at regular intervals for testing. [49] This practice can result in peer-educators noticing and concluding that the names missing are those who have tested positive. [50] Although voluntary in nature, the policy encourage the fulfillment of fulfilling of numerical targets, and in doing so supports unethical ways of testing.[51]

The right to privacy is an essential requirement for persons living with HIV/AIDS due to the potential stigmatizing and discriminatory impact of the revelation of this sensitive information, in any form.[52] The lack of privacy rights often fuels the spread of the disease and exacerbates its impact on high risk communities of individuals. Fears emanating from a privacy breach or a disclosure of data often deter people from getting tested and seeking medical care. The impact of such disclosure of sensitive information including the revelation of tests results to individuals other than the person being tested include low self esteem, fear of loss of support from family/peers, loss of earnings especially for female and transgender sex workers, fear of incrimination for illicit sex/drug use and the insensitivity of counselors. [53]HIV positive individualslive in constant fear of their positive status being leaked. They also shy away from treatment as they fear people might see them taking their medicines and thereby guess their status. Thus breaches in confidentiality and policy gaps in privacy regulation, especially with respect to diseases such as HIV also prevents people from seeking out treatment. [54]

Case Law

The following cases have been used to deliberate upon important points of contention within the ambit of the implementation and impact of Privacy Regulationsin the healthcare sector. This includes the nature and extent of privacy enjoyed by the patient and instances where in the privacy of the patient can be compromised in light of public interest considerations.

Mr. Surupsingh Hrya Naik vs. State of Maharashtra ,[55] (2007)

The decision in this case held that The RTI Act 2005 would supersede The Medical Council Code of Ethics. The health records of an individual in judicial custody should be made available under the Act and can only be denied in exceptional cases, for valid reasons.

Since the Code of Ethics Regulations are only delegated legislation, it was held in the case of Mr. SurupsinghHrya Naik v.State Of Maharashtra[56] that these would not prevail over the Right to Information Act, 2005 (RTI Act) unless the information sought falls under the exceptions contained in Section 8 of the RTI Act. This case dealt with the important point of contention of whether making the health records public under the RTI Act would constitute a violation of the right to privacy. These health records were required to determine why the convict in question was allowed to stay in a hospital as opposed to prison. In this context the Bombay High Court held thatThe Right to Information Act supersedes the regulation that mandate the confidentiality od a person, or in this case a convict’s medical records. It was held that the medical records of a a person sentenced or convicted or remanded to police or judicial custody, if during that period such person is admitted in hospital and nursing home, should be made available to the person asking the information provided such hospital nursing home is maintained by the State or Public Authority or any other Public Body. It is only in rare and in exceptional cases and for good and valid reasons recorded in writing can the information may be denied.

Radiological & Imaging Association v. Union of India ,^{^[57]} (2011)
On 14 January 2011 a circular was issued by the Collector and District Magistrate, Kolhapur requiring the Radiologists and Sonologists to submit an on-line form “F” under the PNDT Rules. This was challenged by the Radiological and Imaging Association, inter alia, on the ground that it violates the privacy of their patients. Deciding the above issue the Bombay High Court held that .The images stored in the silent observer are not transmitted on-line to any server and thus remain embedded in the ultra-sound machine. Further, the silent observer is to be opened only on request of the Collector/ the civil surgeonin the presence of the concerned radiologist/sonologist/doctor incharge of the Ultra-sound Clinic. In light of these considerations and the fact that the `F' form submitted on-line is submitted only to the Collector and District Magistrate is no violation of the doctor's duty of confidentiality or the patient's right to privacy. It was further observed that The contours of the right to privacy must be circumscribed by the compelling public interest flowing through each and every provision of the PC&PNDT Act, when read in the background of the following figures of declining sex ratio in the last five decades.

The use of a Silent Observer system on a sonograph has requisite safeguards and doesn’t violate privacy rights. The declining sex ratio of the country was considered a compelling public Interest that could supersede the right to privacy.

Smt. Selvi and Ors. v.State of Karnataka (2010)
The Supreme Court held that involuntary subjection of a person to narco analysis, polygraph test and brain-mapping violates the ‘right against self-incrimination' which finds its place in Article 20(3)[58] of the Constitution. [59] The court also found that narco analysis violated individuals’ right to privacy by intruding into a “subject’s mental privacy,” denying an opportunity to choose whether to speak or remain silent, and physically restraining a subject to the location of the tests and amounted to cruel, inhuman or degrading treatment.[60]

The Supreme Court found that Narco-analysis violated an individuals’ right to privacy by intruding into a “subject’s mental privacy,” denying an opportunity to choose whether to speak or remain silent.

Neera Mathur v. Life Insurance Corporation (LIC),[61] (1991)
In this casethe plaintiff contested a wrongful termination after she availed of maternity leave. LIC required women applicants to furnish personal details like their menstrual cycles, conceptions, pregnancies, etc. at the time of appointment. Such a requirement was held to go against the modesty and self respect of women. The Court held that termination was only because of disclosures in application, which was held to be intrusive, embarrassing and humiliating. LIC was directed to delete such questions.

The Court did not refer to the term privacy however it used the term personal details as well as modesty and self respect, but did not specifically link them to the right to life or any other fundamental right. These terms (modesty and self respect) are usually not connected to privacy but although they may be the harm which comes from an intrusion of one’s privacy.

The Supreme Court held that Questions related to an individual’s reproductive issues are personal details and should not be asked in the service application forms.

Ms. X vs. Mr. Z &Anr ,[62] (2001)
In this case, the Delhi High Court held that an aborted foetus was not a part of the body of a woman and allowed the DNA test of the aborted foetus at the instance of the husband. The application for a DNA test of the foetus was contested by the wife on the ground of “Right to Privacy”.7In this regard the court held that The Supreme Court had previously decided that a party may be directed to provide blood as a DNA sample but cannot be compelled to do so. The Court may only draw an adverse interference against such party who refuses to follow the direction of the Court in this respect.The position of the court in this case was that the claim that the preservation of a foetus in the laboratory of the All India Institute of Medical Science, violates the petitioner’s right to privacy, cannot be entertained as the foetus had been voluntarily discharges from her body previously, with her consent. The foetus, that she herself has dischargedis claimed to be subjected to DNA test. Thus, in light of the particular facts and the context of the case, it was held that petitioner does not have any right of privacy.

A woman’s right to privacy does not extend to a foetus, which is no longer a part of her body. The right to privacy may arise from a contract as well as a specific relationship, including a marital relationship. The principle in this case has been laid down in broad enough terms that it may be applied to other body parts which have been disassociated from the body of the individual.

It is important to note here that the fact that the Court is relying upon the principles laid down in the case of R. Rajagopal seems to suggest that the Court is treating organic tissue preserved in a public hospital in the same manner as it would treat a public document, insofar as the exception to the right to privacy is concerned.

B.K Parthasarthi vs. Government of Andhra Pradesh ,[63] (1999)
In this case, the Andhra Pradesh High Court was to decide the validity of a provision in the Andhra Pradesh Panchayat Raj Act, 1994 which stipulated that any person having more than two children should be disqualified from contesting elections. This clause was challenged on a number of grounds including the ground that it violated the right to privacy. The Court, in deciding upon the right to privacy and the right to reproductive autonomy, held thatThe impugned provision, i.eSection 19(3) of the said Act does not compel directly anyone to stop procreation, but only disqualifies any person who is otherwise eligible to seek election to various public offices coming within the ambit of the Andhra Pradesh Panchayat Raj Act, 1994 or declares such persons who have already been holding such offices to be disqualified from continuing in such offices if they procreate more than two children.Therefore, the submission made on behalf of the petitioners 'right to privacy' is infringed, is untenable and must be rejected.”

Mr. X v. Hospital Z, Supreme Court of India ,[64] (1998 and 2002)
The petitioner was engaged to be married and thereafter during tests for some other illness in the hospital it was found that the petitioner was HIV positive. This information was released by the doctor to the petitioner’s family and through them to the family of the girl to whom the petitioner was engaged, all without the consent of the petitioner. The Court held that:

“The Right to privacy is not treated as absolute and is subject to such action as may be lawfully taken for the prevention of crime or disorder or protection of health or morals or protection of rights and freedoms of others.”

Right to privacy and is subject to such action as may be lawfully taken for the prevention of crime or disorder or protection of health or morals or protection of rights and freedoms of others.

This decision of this case could be interpreted to extend the principle, of disclosure to the person at risk, to other communicable and life threatening diseases as well. However, a positivist interpretation would render these principle applicable to only to HIV+ cases.

M. Vijaya v. Chairman and Managing Director, Singareni Collieries Co. Ltd. [65] (2001)
The petitioner alleged that she had contracted the HIV virus due to the negligence of the authorities of Maternity and Family Welfare Hospital, Godavarikhani, a hospital under the control of Singareni Collieries Company Ltd., (SCCL), in conducting relevant precautionary blood tests before transfusion of blood of her brother (donor) into her body when she was operated for hysterectomy (Chronic Cervicitis) at the hospital. The petition was initially filed as a Public Interest Litigation,which the court duly expanded in order to address the problem of the lack of adequate precautionary measures in hospitals, thereby also dealing with issues of medical confidentiality and privacy of HIV patients. The court thus deliberated upon the conflict between the right to privacy of an HIV infected person and the duty of the state to prevent further transmission and held:

In the interests of the general public, it is necessary for the State to identify HIV positive cases and any action taken in that regard cannot be termed as unconstitutional. As under Article 47 of the Constitution, the State was under an obligation to take all steps for the improvement of the public health. A law designed to achieve this object, if fair and reasonable, in our opinion, will not be in breach of Article 21 of the Constitution of India

The right of reproductive autonomy is a component of the right to privacy .A provision disqualifying a person from standing for elections due to the number of children had, does not violate the right to privacy as the object of the legislation is not to violate the autonomy of an individual but to mitigate the population growth in the country. Measures to control population growth shall be considered legal unless they impermissibly violate a fundamental right.

However, another aspect of the matter is whether compelling a person to take HIV test amounts to denying the right to privacy? The Court analyzed the existing domestic legislation to arrive at the conclusion that there is no general law that can compel a person to undergo an HIV-AIDS test. However, specific provisions under the Prison Laws[66]

provide that as soon as a prisoner is admitted to prison, he is required to be examined medically and the record of prisoner's health is to be maintained in a register. Further, Under the ITP Act, the sex workers can also be compelled to undergo HIV/ AIDS test.[67]

Additionally, under Sections 269 and 270 of the Indian Penal Code, 1860, a person can be punished for negligent act of spreading infectious diseases.

The right to privacy of a person suspected to be HIV+ would be subordinate to the power and duty of the state to identify HIV+ patients in order to protect public interest and improve public health. However any law designed to achieve this object must be fair and reasonable. In a conflict between the individual’s privacy right and the public’s right in dealing with the cases of HIV-AIDS, the Roman Law principle 'SalusPopuliestSuprema' (regard for the public wealth is the highest law) applies when there is a necessity.

After mapping legislation that permit the invasion of bodily privacy, the Court concluded that they are not comprehensive enough to enable the State to collect information regarding patients of HIV/AIDS and devise appropriate strategies and therefore the State should draft a new legislation in this regard. Further the Court gave certain directions to the state regarding how to handle the epidemic of HIV/AIDS and one of those directions was that the “Identity of patients who come for treatment of HIV+/AIDS should not be disclosed so that other patients will also come forward for taking treatment.”

Sharda v. Dharmpal ,[68] (2003)

The basic question in this case was whether a party to a divorce proceeding can be compelled to a medical examination. The wife in the divorce proceeding refused to submit herself to medical examination to determine whether she was of unsound mind on the ground that such an act would violate her right to personal liberty. Discussing the balance between protecting the right to privacy and other principles that may be involved in matrimonial cases such as the ‘best interest of the child’ in case child custody is also in issue, the Court held:

If the best interest of a child is in issue in the case then the patient’s right to privacy and confidentiality would get limited. The right to privacy of an individual would be subordinate to the power of a court to arrive at a conclusion in a matrimonial dispute and the right of a party to protect his/her rights in a Court of law would trump the right to privacy of the other.

"Privacy" is defined as "the state of being free from intrusion or disturbance in one's private life or affairs". However, the right to privacy in India, is only conferred through an extensive interpretation of Article 21 and cannot therefore in any circumstance be considered an absolute right. Mental health treatment involves disclosure of one's most private feelings However, like any other privilege the psychotherapist-patient privilege is not absolute and may only be recognized if the benefit to society outweighs the costs of keeping the information private. Thus if a child's best interest is jeopardized by maintaining confidentiality the privilege may be limited.” Thus, the power of a court to direct medical examination of a party to a matrimonial litigation in a case of this nature cannot beheld to violate the petitioner’s right to privacy.

Regulation of Privacy in Government and Private Hospitals and Diagnostic Laborataries

A. Field Study
The Hospitals that have been chosen for the analysis of the efficacy of these legislations include prominent Government Hospitals, Private Hospitals and Diagnostic Centers. These Institutes were chosen because of their widely accredited status as centers of medical research and cutting edge treatment. They have also had a long standing reputation due to their staff of experienced and skilled on call doctors and surgeons. The Private Hospitals chosen had patient welfare centers that addressed the concerns of patients including questions and doubts relating to but not limited to confidentiality and consent. The Government hospitals had a public relations office that addressed the concerns of discharged patients. They also provided counseling services to patients to aid them in addressing concerns relate to the treatment that they might want to be kept confidential. Diagnostic laboratories also have an HR department that addresses similar concerns. The laboratory also has a patient welfare manager who addresses the concerns and queries of the patient prior to and during the procedure.

The following section describes the practices promulgated by Government and Private Hospitals, as well as Diagnostic Laboratories in their endeavor to comply with the basic principles of privacy as laid down in the A.P Shah Committee report on Privacy.

(i) Notice

Through an analysis of the information provided by Government and Private hospitals and diagnostic laboratories, relevant conclusions were drawn with regard to the nature, process and method in which the patient information is recorded. Through interviews of various medical personnel including administrative staff in the patient welfare and medical records departments we observed an environment of openness and accountability within the structure of the patient registration system.

In Government Hospitals, the patient is notified of all types of information that is collected, in terms of both personal information as well as medical history. The Patient admission as well as the patient consent form is filled out by the patient or the attending relative accompanying the patient and assistance for the same is provided by the attending staff members, who explain the required details that need to be filled in a language that the patient is able to understand. The patient is notified of the purpose for which such information is collected and the procedure that he/ she might have to undergo depending on his injury or illness. The patient is not however, notified of the method in which he/she may correct or withdraw the information that is provided. There is no protocol provided for the correction or withdrawal of information, once provided. The patient is, at all times notified of the extent and nature of doctor patient confidentiality including the fact that his/her personal information would not be shared even with his/her immediate relatives , insurance companies, consulting doctors who are not directly involved with his/her treatment or any unauthorized third party without requisite consent from the patient. The patient is informed of the fact that in some cases the medical records of the patient will have to be shared with consulting doctors and that all the patient’s medical records would be provided to insurance companies, but this will only be done with the consent of the patient.

The same system of transparency and accountability transcends across private hospitals and diagnostic laboratories as well. In private hospitals, the patient is informed of all the information that is collected and the purpose for which such information may be collected. Diagnostic laboratories have specific patient consent forms for specific types of procedures which the patient will have to fill out depending on the required tests. These forms contain provisions with regard to the confidential nature of all the information provided. This information can only be accessed by the patient and the consulting doctor with the consent of the patient. Both private hospitals and diagnostic laboratories have a specific protocol and procedure in place to correct or withdraw information that has been provided. In order to do so the patient would have to contact the medical records department with requisite proof of the correct information. Private hospitals inform patients of the nature and extent of doctor patient confidentiality at every stage of the registration process. Some private hospitals contain patient safety brochures which inform patients about the nature and extent of consent and confidentiality, even with regard to consulting doctors and insurance agencies. If the patient does not want certain information revealed to insurance agencies the hospital will retain such records and refraining from providing them to third party insurance agencies. Thus, all information provided by the patient remains confidential at the behest of the patient.

(ii) Choice and Consent

Choice and consent are two integral aspects of the regulation of privacy within the healthcare sector. Government and Private hospitals as well as diagnostic laboratories have specific protocols in place to ensure that the consent of the patient is taken at every stage of the procedure. The consent of the patient can also be withdrawn just prior to the procedure even if this consent has already been given by the patient in writing, previously. The choice of the patient is also given ample importance at all stages of the procedure. The patient can refuse to provide any information that may not mandatorily required for the treatment provided basic information regarding his identity and contact information in case of emergency correspondence has been given.

(iii) Collection Limitation

The information collected from the patient in both government and private hospitals is used solely for the purpose that the patient has been informed of. In case this information is used for purposes other than for the purpose that the patient has been informed of, the patient is informed of this new purpose as well. Patient records in both Government and Private hospitals are stored in the Medical Records Department as hard copies and in some cases as scanned soft copies of the hard copy as well. These Medical Records are all stored within the facility. The duration for which the records are stored range from a minimum of two years to a maximum of ten years in most private hospitals. Some private hospitals store these records for life. Government hospitals store these records for a term of thirty years only as hard copies after which the records are discarded. Private hospitals make medical records accessible to any medical personnel who may ask for it provided the requisite proof of identity and reasons for accessing the same are provided, along with an attested letter of authorization of the doctor who is currently involved or had been involved in the treatment of the patient. Government hospitals however do not let any medical personnel access these records except for the doctor involved in the treatment of that particular patient. Both private and government hospitals are required to share the medical records of the patient with the insurance companies. Government Hospitals only share patient records with nationalized insurance agencies such as The Life Insurance Corporation of India (LIC) but not with private insurance agencies. The insurance claims forms that are required prior to providing medical records to the insurance companies mandatorily require the signature of the patient. The patient is thus informed that his records will be shared with the insurance agencies and his signature is a proof of his implied consent to the sharing of these records with the company with which he has filed a health insurance claim.

Diagnostic laboratories collect patient information solely for the purpose of the particular test that they have been asked to conduct by the treating or consulting doctor. Genetic samples (Blood, Semen, Urine etc) are collected at one time and the various tests required are conducted on these samples. In case of any additional testing that is required to be conducted on these samples, the patient is informed. Additional testing is conducted only in critical cases and in cases where the referral doctor requests for the same to be conducted on the collected samples. In critical cases, where immediate testing is required and the patient is unreachable, the testing is conducted without informing the patient. The patient is mandatorily informed after the test that such additional testing was conducted. The patient sample is stored for one week within the same facility. The Patient records are digitized. They can only be accessed by the patient, who is provided with a particular username and password using which he can access only his records. The information is stored for a minimum of two years. This information can be made available to a medical personnel only if such medical personnel has the required lab no, the patients name, and reason for which it needs to be accessed. He thus requires the permission of the authorities at the facility as well as the permission and consent of the patient to access such records. The Medical test records of a patient are kept completely confidential. Even insurance companies cannot access such records unless they are provided to the company by the patient himself. In critical cases however, the patient information and tests results are shared with the treating or referral doctor without the consent of the patient.

(iv) Purpose Limitation

In Government and Private Hospitals, the information is only used for the purpose for which it is collected. There is thus a direct and relevant connection between the information collected and the purpose for which it used. Additional information is collected to gauge the medical history of the patient that may be relevant to the disease that has to be treated. The information is never deleted after it has been used for the purpose for which it had been collected. The Medical Records of the patient are kept for extended periods in hard copy as well as soft copy versions. There is a provision for informing the patient in case the information is used for any purpose other than the purpose for which it was collected. Consent of the patient is taken at all stages of collecting and utilizing the information provided by him.

Diagnostic Laboratories have a database of all the information collected which is saved in the server. The information is mandatorily deleted after it has been used for the purpose for which it was collected after a period of two years. In case the information is used for any purpose other than the purpose for which it was collected, for example, in critical cases where additional tests have to be conducted the patient is\ always informed of the same.

(v) Access and Correction

In private hospitals, the patient is allowed to access his own records during his stay at the hospital. He is given a copy of his file upon his discharge from the hospital in the form of a discharge summary. However, if he needs to access the original records at a later stage, he can do so by filing a request for the same at the Medical Records Department of the hospital. A patient can make amendments or corrections to his records by providing requisite proof to substantiate the amended information. The patient however at no stage can confirm if the hospital is holding or processing personal information about him or her with the exception of the provisions provided for the amendment or correction to the information held.

The Medical records of a patient in a government hospital are completely sealed. A patient has no access to his own records. Only the concerned doctor who was treating the patient during his stay at the hospital can access the records of the patient. This doctor has to be necessarily associated with the hospital and had to have been directly involved in the patient’s treatment in order to access the records. The patient is allowed to amend information in his medical records but only generic information such as the spelling of his name, his address, telephone number etc. The patient is at no point allowed to access his own records and therefore cannot confirm if the hospital is holding or processing any information about him/her. The patient is only provided with a discharge summary that includes his personal information, the details of his disease and the treatment provided in simple language.

Diagnostic laboratories have an online database of patient records. The patient is given a username and a password and can access the information at any point. The patient may also amend or correct any information provided by contacting the Medical records department for the same. The patient can at any time view the status of his record and confirm if it is being held or processed by the hospital. A copy of such information can be obtained by the patient at any time.

(vi) Disclosure of Information

Private Hospitals are extremely cautious with regard to the disclosure of patient information. Medical records of patients cannot be accessed by anyone except the doctor treating that particular patient or consulting on the case. The patient is informed whenever his records are disclosed even to doctors. Usually, even immediate relatives of the patient cannot access the patient’s records without the consent of the patient except in cases where the condition of the patient is critical. The patient is always informed about the type and extent of information that may be disclosed whenever it is disclosed. No information of the patient is made available publicly at any stage. The patient can refuse to consent to sharing of information collected from him/her with non-authorized agencies. However, in no circumstance is the information collected from him/her shared with non authorized agencies. Some private hospitals also provide the patient with patient’s safety brochures highlighting the extent of doctor patient confidentiality, the patient’s rights including the right to withdraw consent at any stage and refuse access of records by unauthorized agencies.

In government hospitals, the medical records of the patient can only be disclosed to authorized agencies with the prior approval of patient. The patient is made aware of the type and extent of information that is collected from him/her and is mandatorily shared with authorized bodies such as insurance agencies or the treating doctor. No information of the patient is made publicly available. In cases where the information is shared with insurance agencies or any such authorized body the patient gives an undertaking via a letter of his consent to such disclosure. The insurance companies only use medical records for verification purposes and have to do so at the facility. They cannot take any original documents or make copies of the records without the consent of the patient as provided in the undertaking.

Diagnostic Laboratories provide information regarding the patient’s medical records only to the concerned or referred doctor. The patient is always informed of any instance where his information may be disclosed and the consent of the patient is always taken for the same. No information is made available publicly or shared with unauthorized agencies at any stage. Information regarding the patient’s medical records is not even shared with insurance companies.

Government and Private Hospitals provide medical records of patients to the police only when a summons for the same has been issued by a judge. Diagnostic laboratories however do not provide information regarding a patient’s records at any stage to any law enforcement agencies unless there is summons from a judge specifying exactly the nature and extent of information required.

Patients are not made aware of laws which may govern the disclosure of information in private and government hospitals as well as in diagnostic laboratories. The patient is merely informed that the information provided by him to the medical personnel will remain confidential.

(vii) Security

The security measures that are put in place to ensure the safety of the collected information is not adequately specified in the forms or during the collection of information from the patient in Government or Private Hospitals. Diagnostic laboratories however do provide the patient with information regarding the security measures put in place to ensure the confidentiality of the information.

(viii) Openness

The information made available to the patient at government and private hospital and diagnostic laboratories is easily intelligible. At every stage of the procedure the explicit consent of the patient is obtained. In government and private hospitals the signature of the patient is obtained on consent forms at every stage of the procedure and the nature and extent of the procedure is explained to the patient in a language that he understands and is comfortable speaking. The information provided is detailed and is provided in simplistic terms so that the patient does at all stages understand the nature of any procedure he is consenting to undergo.

(ix) Accountability

Private hospitals and Diagnostic laboratories have internal and external audit mechanisms in place to check the efficacy of privacy measures. They both have grievance redress mechanisms in the form of patient welfare cells and complaint cells. There is an assigned officer in place to take patient feedback and address and manage the privacy concerns of the patient.

Government hospitals do not have an internal or external audit mechanism in place to check the efficacy of privacy measures. There is however a grievance redressal mechanism in government hospitals in the form of a Public Relations Office that addresses the concerns, complaints, feedback and suggestions of the patients. There is an officer in charge of addressing and managing the privacy concerns of patients. This officer also offers counseling to the patients in case of privacy concerns regarding sensitive information.

International Best Practices and Recommendations

A. European Union
An official EU data protection regulation [69]was issued in January 2012. A key objective of this was to introduce a uniform policy directive across all member states. The regulation, once implemented was to be applicable in all member states and left no room for alteration or amendments.

The regulation calls for Privacy Impact Assessments[70]when there are specific risks to privacy which would include profiling, sensitive data related to health, genetic material or biometric information. This is an important step towards evaluating the nature and extent of privacy regulation required for various procedures and would be effective in the creation of a systematic structure for the implementation of these regulations. The regulation also established the need for explicit consent for sensitive personal data. The basis for this is an inherent imbalance in the positions of the data subject and the data controller, or in simpler terms the patient and the hospital or the life sciences company conducting the research. Thus, implied consent is not enough [71]and a need arises to proceed with the testing only when there is explicit informed consent.

Embedded within the regulation is the right to be forgotten [72]wherein patients can request for their data to be deleted after they have been discharged or the clinical trial has been concluded. In the Indian scenario, patient information is kept for extended periods of time. This can be subject to unauthorized access and misuse. The deletion of patient information once it has been used for the purpose for which it was collected is thus imperative towards the creation of an environment of privacy protection.

Article 81 of the regulation specifies that health data may be processed only for three major processes[73] :

a) In cases of Preventative or occupational medicine, medical diagnosis, the care, treatment or management of healthcare services, and in cases where the data is processed by the healthcare professionals, the data is subject to the obligation of professional secrecy;

b) Considerations of public interest bearing a direct nexus to public health, for example, the protection of legitimate cross border threats to health or ensuring a high standard of quality and safety for medicinal products or services;

c) Or other reasons of public interest such as social protection.

An added concern is the nature and extent of consent. The consent obtained during a clinical trial may not always be sufficient to cover additional research even in instances of data being coded adequately. Thus, it may not be possible to anticipate additional research while carrying out initial research. Article 83[74] of the regulation prohibits the use of data collected for an additional purpose, other that the purpose for which it was collected.

Lastly, the regulation covers data that may be transferred outside the EEA, unless there is an additional level of data protection. If a court located outside the EU makes a request for the disclosure of personal data, prior authorization must be obtained from the local data protection authority before such transfer is made. It is imperative that this be implemented within Indian legislation as currently there is no mechanism to regulate the cross border transfer of personal data.

B. The United States of America
The Health Maintenance Organizations Act, 1973 [75]was enacted with a view to keep up with the rapid development in the Information Technology sector. The digitization of personal information led to new forms of threats with regard to the privacy of a patient. In the face of this threat, the overarching goal of providing effective and yet unobtrusive healthcare still remains paramount.

To this effect, several important federal regulations have been implemented. These include the Privacy and Security Ruled under the Health Insurance Portability and Accountability Act (HIPAA) 1996[76] and the State Alliance for eHealth (2007) [77].The HIPAA privacy rules addressed the use and subsequent disclosure of a patient's personal information under various healthcare plans, medical providers, and clearinghouses. These insurance agencies were the primary agents involved in obtaining a patients information for purposes such as treatment, payment, managing healthcare operations, medical research and subcontracting. Under the HIPAA it is required of insurance agencies to ensure the implementation of various administrative safeguards such as policies, guidelines, regulations or rules to monitor and control inter as well as intra organizational access.

Apart from the HIPAA, approximately 60 laws related to privacy in the healthcare sector have been enacted in more than 34 states. These legislations have been instrumental in creating awareness about privacy requirements in the healthcare sector and improving the efficiency of data collection and transfer. Similar legislative initiative is required in the Indian context to aid in the creation of a regulated and secure atmosphere pertaining to the protection of privacy within the healthcare sector.

C. Australia
Australia has a comprehensive law that deals with sectoral regulations of the right to privacy.An amendment to the Privacy Act1988 [78]applies to all healthcare providers and was made applicable from 21st December 2001.The privacy Act includes the followingpractices:

a. A stringent requirement for informed consent prior to the collection of health related information

b. A provision regarding the information that needs to be provided to individuals before information is collected from them

c. The considerations that have to be taken into account before the transfer of information to third parties such as insurance agencies, including the specific instances wherein this information can be passed on

d. The details that must be included in the Privacy policy of the healthcare service providers' Privacy Policy

e. The securing and storing of information; and

f. Providing individuals with a right to access their health records.

These provisions are in keeping with the 13 National Privacy [79]Principles that represent the minimum standards of privacy regulation with respect to the handling of personal information in the healthcare sector.These guidelines are advisory in nature and have been issued by the Privacy Commissioner in exercise of his power under Section 27(1)(e) [80]of the Privacy Act.

The Act also embodiessimilar privacy principles which include a collection limitation, a definitive use and purpose for the information collected, a specific set of circumstance and an established protocol for the disclosure of information to third parties including the nature and extent of such disclosure, maintenance accuracy ofthe data collected, requisite security measures to ensure the data collected is at all times protected, a sense of transparency,accountability and openness in the administrative functioning of thehealthcare provider and accessibility of the patient to his ownrecords for the purpose of viewing, corroboration or correction.

Additionally, the Act includes the system of identifiers which includes a number assigned by the organization to an individual to identify the purpose of that person's data for the operation of the organization. Further, the Act provides for anonymity wherein individuals have the optionnot to identify themselves while entering into transactions with an organization. The Act also provides for restrictions on the transfer of personal data outside Australia and establishes conclusive and stringent barriers to the extent of collection of personal and sensitive data.These principles although vaguely similar to those highlighted in the A.P. Shah Committee report can be usedto streamline the regulations pertaining to privacy in the healthcare sector and make them more efficient.

Key Recommendations

It is Imperative that Privacy concerns relating to the transnational flow of Private data be addressed in the most efficient way possible. This would involve international cooperation and collaboration to address privacy concerns including clear provisions and the development of coherent minimum standards pertaining to international data transfer agreements. This exchange of ideas and multilateral deliberation would result in creating more efficient methods of applying the provisions of privacy legislation even within domestic jurisdictions.

There is a universal need for the development of a foundational structure for the physical collection, use and storage of human biological specimens (in contrast to the personalinformation that may be derived from those specimens) as these are extremely important aspects of biomedical research and clinical trials. The need for Privacy Impact Assessments would also arise in the context of clinical trials, research studies and the gathering of biomedical data.

Further, there also arises the need for patients to be allowed to request for the deletion of their personal information once it has served the purpose for which it was obtained. The keeping of records for extended periods of time by hospitals and laboratories is unnecessary and can often result in the unauthorized access to and subsequent misuse of such data.

There is a definitive need to ensure the incorporation of safeguards to regulate the protection of patient’s data once accessed by third parties, such as insurance companies. In the Indian Context as well as insurance agencies often have unrestricted access to a patient's medical records however there is a definitive lack of sufficient safeguards to ensure that this information is not released to or access by unauthorized persons either within these insurance agencies or outsourced consultants

The system of identifiers which allocate specific numbers to an individual’s data which can only be accessed using that specific number or series of numbers can be incorporated into the Indian system as well and can simplify the administrative process thus increasing its efficacy. This would afford individuals the privilege of anonymity while entering into transactions with specific healthcare institutions.

An important means of responding to public concerns over potential unauthorized use ofpersonal information gathered for research, could be through the issuing of Certificates of confidentiality as issued in the United States to protectsensitive information on research participants from forced disclosure. [81]

Additionally, it is imperative that frequent discussions, deliberations, conferences and roundtables take place involving multiple stakeholders form the healthcare sector, insurance companies, patient’s rights advocacy groups and the government. This would aid in evolving a comprehensive policy that would aid in the protection of privacy in the healthcare sector in an efficient and collusive manner.

Conclusions

The Right to Privacy has been embodied in a multitude of domestic legislations pertaining to the healthcare sector. The privacy principles envisioned in the A.P Shah Committee report have also been incorporated into the everyday practices of healthcare institutions to the greatest possible extent. There are however significant gaps in the policy formulation that essentially do not account for the data once it has been collected or its subsequent transfer. There is thus an imminent need for institutional collaboration in order to redress these gaps. Recommendations for the same have been made in the report. However, for an effective framework to be laid down there is still a need for the State to play an active role in enabling the engagement between different institutions both in the private and public domain across a multitude of sectors including insurance companies, online servers that are used to harbour a data base of patient records and civil action groups that demand patient privacy while at the same time seek to access records under the Right to Information Act. The collaborative efforts of these multiple stakeholders will ensure the creation of a strong foundational framework upon which the Right to Privacy can be efficiently constructed.

[1] . Report of the group of experts on Privacy chaired by Justice A.P Shah <http://planningcommission.nic.in/reports/genrep/rep_privacy.pdf> [Accessed on 14^th May 2014]

[2] . Nissenbaum, H. (2004). Privacy as Contextual Integrity. Washington Law Review, 79(1), 101-139.

[3] . Ibid.

[4] . Thomas, J. (2009). Medical Records and Issues in Negligence, Indian Journal of Urology : IJU : Journal of the Urological Society of India, 25(3), 384-388. doi:10.4103/0970-1591.56208.

[5] . Ibid

[6] . Plaza, J., &Fischbach, R. (n.d.). Current Issues in Research Ethics : Privacy and Confidentiality. Retrieved December 5, 2011, from http://ccnmtl.columbia.edu/projects/cire/pac/foundation/index.html.

[7] . Ibid.

[8] . The Mental Health Act, 1987 <https://sadm.maharashtra.gov.in/sadm/GRs/Mental%20health%20act.pdf> [Accessed on 14^th May 2014]

[9] . The Mental Health Act, 1987, s. 13(1).

[10] .The Mental Health Act, 1987, s. 38.

[11] .The Mental Health Act, 1987, s. 40.

[12] .The Mental Health Act, 1987, s. 21(2).

[13] .The Mental Health Act, 1987, s. 13(1), Proviso.

[14] . Also see the: Pre-Conception and and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Rules, 1996.

[15] . Pre-Conception and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994, s. 4(3).

[16] . Pre-Conception and Pre-Natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994, s. 4(2). Pre-natal diagnostic techniques shall be conducted for the purposes of detection of: chromosomal abnormalities, genetic metabolic diseases, haemoglobinopathies, sex-linked genetic diseases, congenital anomalies any other abnormalities or diseases as may be specified by the Central Supervisory Board.

[17] .Medical Termination of Pregnancy Amendment Act, 2002, Notification on Medical Termination of Pregnancy (Amendment) Act, Medical Termination of Pregnancy Regulations, 2003 and Medical Termination of Pregnancy Rules, 2003.

[18] .Medical Termination of Pregnancy Act, 1971 (Amended in 2002), s. 2(4) and 4, and Medical Termination of Pregnancy Rules, 2003, Rule 8

[19] .Medical Termination of Pregnancy Regulations, 2003, Regulation 4(5).

[20] .Medical Termination of Pregnancy Regulations, 2003, Regulation 5.

[21] .Medical Termination of Pregnancy Regulations, 2003, Regulation 4(2).

[22] .Medical Termination of Pregnancy Regulations, 2003, Regulations 4(2) and 4(4).

[23] . Code of Ethics Regulations, 2002 available at

http://www.mciindia.org/RulesandRegulations/CodeofMedicalEthicsRegulations2002.aspx .

[24] . Code of Ethics Regulations, 2002 Chapter 2, Section 2.2.

[25] .Ethical Guidelines for Biomedical Research on Human Subjects. (2006) Indian Council of Medical Research New Delhi.

[26] . Informed Consent Process, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2006). Indian Council of Medical Research New Delhi.P. 21.

[27] . Statement of Specific Principles for Human Genetics Research, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2000) . Indian Council of Medical Research New Delhi.P. 62.

[28] . General Ethical Issues. Ethical Guidelines for Biomedical ResearchonHuman Subjects (2006). Indian Council of Medical Research New Delhi.P. 29.

[29] . Statement of Specific Principles for Epidemiological Studies, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2000) . Indian Council of Medical Research New Delhi P. 56.

[30] . Statement of General Principles, Principle IV and Essential Information on Confidentiality for Prospective Research Participants, Ethical Guidelines for Biomedical ResearchonHuman Subjects (2006). Indian Council of Medical Research New Delhi.P. 29.

[31] . The IRDA (Third Party Administrators - Health Services) Regulations 2001, (2001), Chapter 5. Section 2.

[32] . The IRDA (Sharing Of Database for Distribution of Insurance Products) Regulations 2010.

[33] . The IRDA (Sharing Of Database For Distribution Of Insurance Products) Regulations 2010.

[34] . The IRDA (Sharing Of Database For Distribution Of Insurance Products) Regulations 2010

[35] . List of TPAs Updated as on 19th December, 2011, Insurance Regulatory and Development Authority (2011), http://www.irda.gov.in/ADMINCMS/cms/NormalData_Layout.aspx?page=PageNo646 (last visited Dec 19, 2011).

[36] . The IRDA, Guideline on Outsourcing of Activities by Insurance Companies, (2011).

[37] . The IRDA, Guideline on Outsourcing of Activities by Insurance Companies, (2011), Section 9.11. P. 8.

[38] .The Epidemic Diseases Act, 1897.

[39] .The Epidemic Diseases Act, 1897. s. 2.1.

[40] .The Epidemic Diseases Act, 1897, s. 2.2(b).

[41] . The National Policy for Persons with Disabilities, 2006, Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Rules, 1996.

[42] . Research, National Policy for Persons with Disabilities, 1993.

[43] . Survey of Disabled Persons in India. (December 2003) National Sample Survey Organization. Ministry of Statistics and Programme Implementation. Government of India.

[44] .Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act. 1995, Section 35.

[45]. Research. National Policy for Persons with Disabilities, 2003.

[46]. http://www.lawyerscollective.org/files/Anti%20rights%20practices%20in%20Targetted%20Interventions.pdf

[47]. http://www.lawyerscollective.org/files/Anti%20rights%20practices%20in%20Targetted%20Interventions.pdf

[48]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.22.

[49]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.16.

[50]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.16.

[51]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.14.

[52]. http://www.hivaidsonline.in/index.php/HIV-Human-Rights/legal-issues-that-arise-in-the-hiv-context.html

[53]. Chakrapani et al, (2008) ‘HIV Testing Barriers and Facilitators among Populations at-risk in Chennai, India’, INP, p 12.

[54]. Aneka, Karnataka Sexual Minorities Forum. (2011)“Chasing Numbers, Betraying People: Relooking at HIV Services in Karnataka”, p.24.

[55] .http://www.indiankanoon.org/doc/570038/

[56] .http://www.indiankanoon.org/doc/570038/

[57] .http://www.indiankanoon.org/doc/680703/

[58] . No person accused of any offence shall be compelled to be a witness against himself’, (the 'right to silence').

[59] . http://indiankanoon.org/doc/338008/

[60] . http://www.hrdc.net/sahrdc/hrfeatures/HRF205.pdf

[61] . AIR 1992 SC 392.

[62] . 96 (2002) DLT 354.

[63] .AIR 2000 A.P 156.

[64] .http://indiankanoon.org/doc/382721/

[65] .http://indiankanoon.org/doc/859256/

[66] .See Sections 24, 37, 38 and 39 of The Prisons Act, 1894 (Central Act 9 of 1894) Rules 583 to 653 (Chapter XXXV) and Rules 1007 to 1014 (Chapter LVII) of Andhra Pradesh Prisons Rules, 1979

[67] .Section 10-A,17(4) ,19(2) Immoral Traffic (Prevention) Act 1956

[68] .http://www.indiankanoon.org/doc/1309207/

[69] . http://ec.europa.eu/justice/data-protection/document/review2012/com_2012_11_en.pdf

[70] . Article 33, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation) < http://ec.europa.eu/justice/data-protection/document/review2012/com_2012_11_en.pdf> [Accessed on 14^th May, 2014]

[71] .Article 4 (Definition of “Data Subject’s Consent”), Article 7, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

[72] . Article 17, “Safeguarding Privacy in a Connected World – A European Data Protection Framework for the 21st

Century” COM(2012) 9 final. Based on, Article 12(b), EU Directive 95/46/EC – The Data Protection Directive at <http://www.dataprotection.ie/docs/EU-Directive-95-46-EC-Chapter-2/93.htm> [Accessed on 14^th May, 2014]

[73] . Article 81, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

[74] .Article 83, Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL

[75] . Health Maintainence and Organization Act 1973, Notes and Brief Reports available at http://www.ssa.gov/policy/docs/ssb/v37n3/v37n3p35.pdf [Accessed on 14th May 2014].

[76] . Health Insurance Portability and Accountability Act, 1996 available at http://www.hhs.gov/ocr/privacy/hipaa/administrative/statute/hipaastatutepdf.pdf [Accessed on 14th May 2014]

[77] . Illinois Alliance for Health Innovation plan available at http://www2.illinois.gov/gov/healthcarereform/Documents/Alliance/Alliance%20011614.pdf [Accessed on 14^th May 2014]

[78] . The Privacy Act 1988 available at http://www.comlaw.gov.au/Series/C2004A03712 [Accessed on 14th May 2014]

[79] . Schedule 1, Privacy Act 1988 [Accessed on 14^th May 2014]

[80] .Section 27(e), Privacy Act 1988 [Accessed on 14^th May 2014]

[81] . Guidance on Certificates of Confidentiality, Office of Human Research Protections, U.S Department of Health and Human Services available at http://www.hhs.gov/ohrp/policy/certconf.pdf [Accessed on 14^th May, 2014].

For more details visit https://cis-india.org/internet-governance/blog/privacy-in-healthcare-policy-guide

The Embodiment of the Right to Privacy within Domestic Legislation

tanvi — 2014-09-08T02:37:39Z

The Right to Privacy is a pivotal construct, essential to the actualization of justice, fairness and equity within any democratic society. It is an instrument used to secure the boundaries of an individual’s personal space, in his interaction with not only the rest of society but also the State.

It is within this realm of the social transaction that there exists an unending conflict between the Right to Privacy of an individual and the overbearing hand of the State as a facilitator of public interest. This right thus acts as a safety valve providing individuals with a sacred space within which their interactions in their personal capacity have no bearing on their conduct in the public sphere. The preservation of this space is incredibly important in order to ensure a willingness of individuals to engage and cooperate with the State in its fulfillment of public welfare measures that would otherwise be deemed as intrusive. It is in this regard that the Right to Privacy, one of the last sustaining rights that an individual holds against a larger State interest, ought to be protected by the law.

There are numerous dimensions to the idea of the Right to Privacy. These include but are not limited to the privacy of person, privacy of communication, personal privacy, transactional privacy, privacy of information and the privacy of personal data.

The Supreme Court of India has come to the rescue of individuals, time and again by construing "Right to Privacy" as an extension of the Fundamental Right to “Protection of Life and Personal liberty” under Article 21 of the Constitution. This has been reflected in the adjudicatory jurisprudence of the Constitutional courts in the country. However, there exists no Constitutional remedy to redress the breach of privacy by a nongovernmental actor, except under tortuous liability. The power and authority of public and private institutions to use an individual’s personal data for larger interests of national security or effectuation of socio-economic policies is still under extensive scrutiny. It is in this regard that we have compiled a number of sectoral legislations, regulating domains ranging from Finance and Telecom to Healthcare, Freedom of Expression, Consumer rights and Procedural codes. The highlighted provisions under each Act pertain to the mechanisms embodied within the legislation for the regulation of privacy within their respective sectors. Through this we aim to determine the threshold for permissible collection of confidential data and regulatory surveillance, provided a sufficient need for the same has been established. The determination of such a threshold is imperative to formulating a consistent and effective regime of privacy protection in India.

Click to download the below resources:

Legislations
Master Circulars
Finance and Privacy
Code of Civil Procedure and Code of Criminal Procedure
Freedom of Expression
Identity and Privacy
National Security and Privacy
Consumer Protection
Transparency and Privacy
Healthcare
Telecom

Case Laws
Code of Civil Procedure and Code of Criminal Procedure
Freedom of Expression
Identity and Privacy
National Security and Privacy
Consumer Protection
Transparency and Privacy
Healthcare
Telecom

For more details visit https://cis-india.org/internet-governance/blog/the-embodiment-of-right-to-privacy-within-domestic-legislation