Generating Stakeholder Support and Demand for Health Data Sharing, Linkage, and Use We wanted to kick-off this meeting by reviewing: The overall objectives of the Generating Stakeholder Support and Demand Initiative; and Beginning the discussion of the vision of a health system that leverages and links data to support continuous learning and improvement.

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

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

To demonstrate how this initiative will impact the demand function, this logic model shows the planned activities and how they relate to the ultimate goals. In case its difficult to see on the screen, you also have a copy of this figure in your folder on the second page of the project overview. This slide highlights the main project activities, which include the development of a vision statement describing the ideal state for a health care system that leverages and shares data to learn from every patient experience and feeds the results back to physicians, patients, and health care executives to continuously improve care and outcomes, developing three stakeholder statements describing barriers, opportunities, and action steps for achieving the vision, and building a consortium of organizations committed to implementing the identified principles and approaches. The anticipated impacts of this work include: (read from slide)

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

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. The focus of the discussion today is on finalizing the stakeholder statement outlines and identifying concrete action steps that can be undertaken in the next two to three years to begin to address the barriers to data sharing, linkage, and use that the workgroups have identified and prioritized over the past 5 months. Following the meeting, the stakeholder statements will be developed based on the content from the outlines and combined with the vision statement in a National Academy of Medicine Special Publication, which will be shared at a public meeting in the summer of 2019 in an effort to build a consortium of organizations committed to implementing the identified action steps. @theNAMedicine

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