Health data governance: Empowering communities to effectively manage their data
The current ecosystem of health data sharing
Health data governance assumes significance due to the highly sensitive nature of information under question, potentially revealing confidential data on medical history, racial or ethnic background, and financial status of individuals and the broader communities they belong to. While data sharing promises to significantly improve healthcare quality and health systems performance, unchecked sharing has adverse ramifications for access and affordability of health services for individuals, particularly when such information exists in silos, dispersed across multiple sources. Individuals and communities – primary generators of this information – have little visibility on how their data is used by entities concerned with collecting and processing data.
In addition to challenges pertaining to the availability of reliable and quality data, current ad-hoc, top-down contractual mechanisms for health data sharing employed by corporations, providers and public agencies do not address public concerns about trust, privacy, and misuse of data. This highlights the distressing consequences of predatory mechanisms which expressly exclude communities from participating in data governance, deepening the asymmetries of our expanding data economy.
Need for stewardship
The extractive model of data relationships characterised above follows a growing realisation that access to data is highly lopsided and unequal, necessitating a framework that is grounded in democracy and inclusivity. Recognising collective rights over data is a significant step towards rebalancing the data economy, foregrounding user agency and accountability as imperative considerations for building responsible data sharing mechanisms.
To this end, data stewardship is emerging as a framework for equitable data governance, simultaneously unlocking the societal value of data while respecting the autonomy of individuals and communities. Aapti’s research, alongside that conducted by ODI and Mozilla, has demonstrated the virtues of an alternative paradigm for data governance whose benefits can accrue to all stakeholders in the ecosystem – individuals, communities, private entities, and the public at large.
Health data stewardship
Stewardship assumes importance in the context of the health sector where data sharing for public good and innovation is at odds with the data rights and privacy of patients involved. During the current pandemic where digital health solutions promise to compensate for the failings of overwhelmed health systems, their lack of transparency has been a cause for alarm. A flagrant disregard for user agency is a dominant feature of such solutions which depend on instituting new data pipelines to support their services. For instance, a patient consulting a general physician through an interactive voice response system (IVRS) platform has limited knowledge about how the recorded conversation, likely containing sensitive health information, would be used/shared by the service provider.
Creating user-centric models of stewardship is imperative to empower individuals and communities to participate meaningfully in data decisions. Our research has relied on case studies of organisations operating as health data stewards, demonstrating the real impact of democratic governance frameworks. Examples include SalusCoop, a health data cooperative whose members can review medical research proposals and consent to share their data for specific projects. It also enables democratic decision-making through a general assembly of members accorded with one vote each.
Similarly, Citizen is a private collaborative platform that enables individual patients and larger patient advocacy groups for cancer and rare neurologic disorders to collect, digitize, and share their health information for research with pharmaceutical companies as well as hospitals for treatment management of individuals. The platform has introduced innovative modes of implementing user-centric health research wherein patients and advocacy groups are consulted while framing partnerships with third-party entities who would gain access to their data, deciding the terms and purpose of such collaborations. Individual consent for participation in specific research is essential to the operation of Citizen.
These models perform the twin tasks of unlocking the societal value of data by empowering communities whilst concomitantly creating public good solutions – evolving a potentially diverse set of data sharing mechanisms between patients, providers, academics, and pharma companies to use sensitive health information for research and treatment.
Health data governance
While the merits afforded by stewardship have been outlined, the specific implications it holds for various stakeholders ought to be unpacked in light of the various governance considerations it involves. Here are three recommendations to implement a more equitable framework for health data governance, for regulators and organisations looking to steward sensitive health information:
- Increase transparency in health data sharing agreements: Existing data sharing agreements between healthcare providers, technology companies, and hospitals remain opaque to patients and caregivers who are the primary data generators. The systematic exclusion of individuals from data sharing agreements has an invisiblising effect on their position within the data value chain. There is a need to increase the transparency of agreements for patients and the larger public. This can be achieved by implementing mandatory disclosure requirements of stakeholders with respect to health data use/sharing.
- Conduct regular audits: Regulators and citizen groups should conduct regular audits of data sharing practices among providers, private corporations, and public agencies to ensure transparency, accountability, and procedural fairness in the process of sharing. This step goes beyond conventional internal review board assessments which are merely concerned with protecting the privacy of individuals involved in research, while comprehensive data audits can highlight broader opportunities for health data sharing for social good.
- Accentuate user agency in data governance: Users should be organised and empowered to negotiate with healthcare providers to have greater say in who uses data and to what end – mechanisms like data cooperatives (ex: Salus.coop, MiData) can be institutionalised to actualise this. An enhanced agency can impact existing patterns of consent – marking a departure from the current blanket and uninformed processes to more dynamic, process-based, and granular approaches. These mechanisms can also make sure that data generators (patients and communities) are compensated either financially or through individual-centric insights obtained from their data.
As data value chains continue to evolve against the backdrop of the pandemic, there is a need to forge creative solutions which place patients and their caregivers at the heart of health data governance frameworks. Balancing data openness and innovation to inform public health policy, research, and disease management without compromising rights, agency and security of data generators is the primary aim of health data stewardship – a mechanism whose essential roots lie in fairness, transparency, and accountability.