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Bhinge is managing director, global networks and partnerships, Pandemic Prevention Institute, Health Initiative, The Rockefeller Foundation, and Rasul is manager, Innovation, … MORE
A data revolution is underway in healthcare, and it has been given its strongest headwind by the pandemic, where data from contact tracing apps and other tracking systems helped shape and strengthen a multidimensional response. This use case has set a new paradigm for crafting effective health planning.
Consequently, health planning will call for larger volumes of data than ever. It’s important to note that this new, considerably appreciated value of user health data is matched by a greater priority: the need to preserve the privacy of individuals to whom it belongs to. As a society, we must ensure a data stewardship approach, which recognizes the deep value of data as a collective resource for individuals and communities, whose use creates real, practical benefits – as well as risks.
The Bengaluru-based Aapti Institute – which works at the intersection of technology and society – has investigated how data stewards can serve as intermediaries between users and communities that generate data and the institutions harnessing the resource. Stewards have an important role to play in not only safeguarding data but also unlocking its value to advance society. To actualize their role, data stewards have a wide host of structural mechanisms, including data trusts, data collaboratives, personal data stores, and data exchanges.
However, there is limited understanding of the power of data sharing and how better data exchange systems that protect individuals and communities can be implemented in India and beyond. It is in this backdrop that a study by Aapti ‘Health Data Stewardship: Learning From Use Cases’ has found that access to data is unequal and should be democratized and made more inclusive. However, though data sharing is imperative, it is also incredibly complex.
Data stewardship can protect and prevent
The health sector is ripe for efficient, safe, and successful data sharing to advance science and ensure better patient care. A culture of data stewardship in health offers remarkable incentives by unlocking previously inaccessible datasets. This unlocks tremendous progress on disease research and permits governments to understand and more quickly address public health emergencies – all critical to preserving human life. There are hurdles regarding usability and availability of data, and the friction between data sharing and personal rights is significant in the health ecosystem. Both of which need to be accounted for as regulatory support comes in.
The health sector has a long history of sharing data for public value, and a diverse set of mechanisms for patients, healthcare providers, academics, and pharmaceutical companies to use data for research and innovation has evolved. The need to build a common and collaborative environment for data exchange to address Covid-19 and future public health needs was a recurring ask from research respondents.
Recognizing that successful data stewardship is rooted in regulatory support, Aapti looked at effective top-down models of data stewardship across the globe from Estonia to Canada and beyond. In India – much like other countries examined – they found that institutionally-backed data rights are the backbone for greater participation and meaningful engagement by individuals and communities in the data economy. At the heart of this effort is embedding individuals and communities as crucial generators of data who are protected by rights regarding how their data is used downstream.
Global.health, a unique civil society-driven data repository that provides access to real-time, anonymized epidemiological data, was one instance the Aapti researchers found of a bottom-up mechanism of health data stewardship success during the pandemic. Elsewhere, the experiences of MIDATA and Ciitizen – both data cooperatives driven by consumer security – surfaced insights for how to effectively organize communities around equitable health data governance. These stewardship models have bolstered research and innovation in the health sector informed by open and trusted data that is not only easily accessible, but which respects the autonomy and rights of individuals over corporations.
A crucial opportunity for India’s public institutions
The researchers conclude that India’s current data protection ecosystem falls short. India lacks the necessary legal protections to ensure that data – particularly sensitive health information – is used in responsible ways that respect the privacy and autonomy of citizens while purporting to deliver better health services.
To remedy this, the researchers provide a roadmap with successive milestones, from defining user rights over data to embedding regulatory sandboxes as a means of facilitating safe experimentation with health data. They recommend addressing the absence of an overarching data rights framework in the country, such as the proposed Personal Data Protection Bill, 2019, as well as reforms to the National Digital Health Mission (NDHM) policy, which forms the backbone of India’s health data ecosystem.
To enable a shift towards responsible data sharing in health, public institutions must play a pivotal role in building necessary frameworks. This includes passing strong and enforceable legislation regarding protecting users against harms arising from the use of their data. To engender trust in the ecosystem, these frameworks must enable healthcare companies to work with community and patient groups to inform practice. To make data shareable and usable, common standards are required.
The research has been instrumental in demonstrating that governments, corporations, and civil society organizations occupy powerful positions in mediating public access to valuable health information. Any meaningful realization of a successful data stewardship model will require an exploration of two contrasting yet complementary approaches: a bottom-up approach, centred on data generators with a network of civil society organizations that facilitate engagement, and top-down policy action focused on the state’s legislative and regulatory functions that define the contours of such systems.
Embedding health data stewardship is pivotal in empowering individuals and communities to control their data and structure data flows in ways that deliver better health outcomes for the larger global populace.
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Views expressed above are the author’s own.
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