Rethinking the governance of health data

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A data revolution is underway in healthcare, and the pandemic has given it its biggest headwind, where data from contact tracing apps and other tracking systems has helped shape and strengthen a multidimensional response. This use case established a new paradigm for building effective health planning.

Therefore, health planning will require larger volumes of data than ever before. It is important to note that with this new and greatly appreciated value of user health data comes a greater priority: the need to preserve the privacy of the people to whom it belongs. As a society, we must ensure an approach to data management, which recognizes the deep value of data as a collective resource for individuals and communities, the use of which creates real and practical benefits – as well as risks.

The Bengaluru-based Aapti Institute – which works at the intersection of technology and society – investigated how data stewards can act as intermediaries between users and the communities that generate data and the institutions that leverage data. resource. Stewards have an important role to play not only in protecting data, but also in leveraging its value to move society forward. To fulfill their role, data stewards have a wide range of structural mechanisms, including data trusts, data collaborations, personal data stores, and data exchanges.

However, there is a 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 context that a study by Aapti “Health Data Stewardship: Learning From Use Cases” found that access to data is unequal and should be democratized and made more inclusive. However, while data sharing is imperative, it is also incredibly complex.

Data stewardship can protect and prevent

The healthcare industry is ripe for efficient, secure and successful data sharing to advance science and ensure better patient care. A culture of health data management offers remarkable incentives by unlocking previously inaccessible datasets. This unlocks tremendous advances in disease research and enables governments to understand and deal with public health emergencies faster – all essential for preserving human life. There are barriers around usability and availability of data, and the friction between data sharing and personal rights is significant in the healthcare ecosystem. Both need to be considered as regulatory support arrives.

The healthcare industry has a long history of sharing data of public value, and a diverse set of mechanisms that enable patients, healthcare providers, academics, and pharmaceutical companies to use data for research and research. innovation has evolved. The need to create a common and collaborative environment for data exchange in order to meet Covid-19 and future public health needs was a recurring request from research respondents.

Recognizing that successful data stewardship depends on regulatory support, Aapti examined effective top-down models of data stewardship around the world, from Estonia to Canada and beyond. In India, as in other countries reviewed, they found that data rights secured by institutions are the backbone of greater participation and meaningful engagement of individuals and communities in the process. data economy. At the heart of this effort is the integration of individuals and communities as essential generators of data that is protected by rights regarding how their data is used downstream.

Global.health, a single, civil society-managed data repository that provides access to real-time anonymized epidemiological data, was an example that Aapti researchers discovered of a bottom-up mechanism for successful data management from health during the pandemic. Elsewhere, the experiences of MIDATA and Ciitizen – two data cooperatives focused on consumer safety – have sparked ideas on how to effectively organize communities around equitable governance of health data. These models of stewardship have strengthened health sector research and innovation based on open and reliable data that is not only easily accessible, but respects the autonomy and rights of individuals over business.

A crucial opportunity for Indian public institutions

The researchers conclude that the current Indian data protection ecosystem is insufficient. India does not have the necessary legal protections to ensure that data – especially sensitive health information – is used in a responsible manner that respects the privacy and autonomy of citizens while claiming to provide better health services.

To address this, the researchers provide a roadmap with successive milestones, from defining user rights over data to integrating regulatory sandboxes as a way to facilitate safe experimentation with health data. They recommend addressing the lack of a comprehensive data rights framework in the country, such as the Personal Data Protection Bill, 2019, as well as policy reforms for the National Health Mission. Digital (NDHM), which is the backbone of India’s healthcare data ecosystem. .

To enable an evolution towards responsible sharing of health data, public institutions must play a central role in building the necessary frameworks. This includes the adoption of strong and enforceable legislation regarding the protection of users against damage resulting from the use of their data. To instill 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 needed.

Research has helped demonstrate that governments, businesses and civil society organizations hold powerful positions in mediating public access to valuable health information. Any meaningful realization of a successful data management model will require exploring two contrasting but complementary approaches: a bottom-up, data-generator-centric approach with a network of civil society organizations that facilitate engagement, and top-down political action focused on the legislative and regulatory functions of the state that define the contours of these systems.

Integrating health data management is essential to empower individuals and communities to control their data and structure data flows in ways that deliver better health outcomes for the wider global population.



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The opinions expressed above are those of the author.



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