Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use

1. Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use

2. Initiative Aim • To transform the development of evidence and application of care innovations by generating stakeholder support and demand for leveraging and sharing data for continuous learning. • Key activities include: • building agreement around a vision for data sharing; • engaging stakeholders in conversations about ethical, regulatory, financial, and pragmatic barriers, opportunities, and strategies for promoting data sharing, linkage, and use; and • building a consortium of organizations committed to implementing identified principles and approaches. @theNAMedicine

3. A Focus on the Demand Function • While we have the technological ability to share electronic data to support improvements in health care, major cultural and political barriers still exist • Driving support and demand among key stakeholder groups can be a catalyst for addressing those existing cultural and political barriers • Key stakeholder groups identified for this initiative include: • Patients and families • Research oversight leaders • Health care executives @theNAMedicine

5. Vision Statement A health care system that shares and applies routinely generated information to support continuous learning to transform health, health care, and health equity, and does so in a manner that enhances stakeholder trust, experience, and transparency in system performance. @theNAMedicine

6. Meeting Objectives • Meeting Focus: To review the progress and develop principles, approaches, and strategies for addressing barriers to data sharing, linkage, and use. • Motivating questions: Each stakeholder workgroup, in developing their stakeholder statement, will consider the following: • Key Issues: Does the stakeholder statement adequately capture the ethical, regulatory, cultural, and financial barriers to data sharing? • Strategies: What are the key policy and cultural levers for facilitating progress? • Practices:What are concrete next steps for advancing electronic health data sharing, linkage, and use and who should steward implementation of these action steps? • Outcomes anticipated: Development of three stakeholder statements that, in addition to articulating the importance of data sharing from their constituent’s perspective, describe the cultural, regulatory, financial, and ethical barriers, and identify long and short term solutions for accelerating progress. @theNAMedicine

7. Agenda Overview 9:30 am - 10:30 am: Update from the stakeholder workgroup chairs 10:45 am – 1:15 pm: Breakout sessions: Refinement of the stakeholder statements 1:30 pm – 2:15 pm: Summary of workgroup discussions 2:15 pm – 3:15 pm: Potential synergistic effects of workgroup recommendations 3:15 pm 3:30 pm: Next Steps @theNAMedicine