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.

Meeting Focus: Contributions of health services research (HSR) to effectiveness and efficiency in health and health care, and key priorities for HSR as a means of generating the evidence required to guide transformative progress in the next two decades. Core Questions: Contributions: How has HSR contributed to improvement in health gains and health care access, delivery, and quality—at various levels: system, organization, practice, and health-health care interfaces? Priorities: What are the challenges, opportunities, and priorities for HSR in the next decade, and beyond, for improving access, safety, quality, value, and patient/family engagement in a changing health care environment, while reducing spending growth and advancing population health progress? Support: What are the current public and private sources of support for HSR, what trends are in play, and do the metrics of decision-making and assessment vary by source and focus (e.g. technology assessment, clinical guidelines, care quality and safety, primary care, utilization and financing)? What should be the role of federal funding for HSR, now and in the long term? Organization: How are HSR opportunities identified? How is HSR funded, coordinated, and results disseminated? How might these processes be improved? What is or should be the profile of a governance structure for HSR? Statutory mandate: What might be the consequences if current legislative mandates related to HSR priorities—e.g. a Center on Primary Care Research and the Centers for Education and Research on Therapeutics (CERTs)—were eliminated? How might important emphases be sustained and nurtured?   Intended Outcomes: Identify unique opportunities for the field of HSR to advance rigorous, timely, and relevant evidence, and inform national progress toward a health system that is person-centered, high performing, and continuously 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.