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.

The biannual members meeting of the Leadership Consortium for a Value & Science-Driven Health System occurred on Wednesday, March 21. The meeting centered around generating stakeholder demand and action for data sharing, linkage, and use for continuous learning.

An ad hoc convening activity, under the auspices of the NAM Leadership Consortium for a Value & Science-Driven Health System, the Value Incentives & Systems Innovation Collaborative (VISIC) seeks to build on the foundation of prior work engaged by the Consortium to develop a learning health system by convening organizations and individuals actively working to design, develop, test, and evaluate innovative approaches to shifting health care payment models in ways that reward value, and develop and apply system-based tools and processes for improving health and health care.

Formerly the Electronic Health Records Innovation Collaborative (EHRIC), the Digital Learning Collaborative (DLC) is an ad hoc convening activity under the auspices of the NAM Leadership Consortium for Value & Science-Driven Health Care.

A workshop, held on November 21-22, 2017, sponsored by the Peterson Center on Healthcare and convened by the Institute of Medicine, will engage in a discussion of the issues, challenges, and approaches that present the greatest opportunity creating models of care for high-need patients.