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Meeting Focus: Patient ownership of health data – implications for a learning health system.

Motivating Questions:

  1. Potential: Countless health data points are generated and collected daily in routine care and treatment, through research studies, by personal assessment and monitoring activities – yet only a tiny fraction are applied for care improvement or treatment discovery. If all health data could be available in a protected fashion for new insights, what might be the benefits for health care and health progress?
  2. Barriers: To what extent are uncertainties about data ownership and control presenting a rate-limiting problem? How much do institutional competitive forces present an issue? Is the interpretation of institutional privacy regulations a barrier?
  3. Ownership implications: If it is clear that individuals own their personal data, what access, control, and use protocols are necessary to facilitate data application for care improvement and discovery? How can the necessary infrastructure be supported?
  4. Strategies: What issues and strategies take priority to catalyze transformative change? What are the stakeholder responsibilities, how can they be mobilized, and is there a constructive role for the National Academy of Medicine?


Outcomes Anticipated: Establishment of a time-limited NAM Working Group to elaborate on issues, implications, and approaches for fostering patient data ownership and control of health data as a strategy for health progress.

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