Health data governance: Empowering communities to effectively manage their data

Stewardship can replace existing patterns of sharing data to distribute value across stakeholders (Source: Aapti analysis)
There are three stages of data stewardship that most organisations traverse through while making trade-offs at each level (Source: Aapti analysis)
  1. 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 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.
  2. 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.
  3. 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. 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.

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Aapti Institute

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At the frontier of tech and society

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