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INTRODUCTION AND OVERVIEW¹

Learning health systems seek to use administrative and clinical data for continuous improvement in the quality, effectiveness, and efficiency of care. They work to embed knowledge generation and performance transparency as part of their organizational culture, reinforced by a growing demand from external stakeholders to ensure that data be applied to improve the quality and outcomes of care. In developing the National Patient-Centered Clinical Research Network (PCORnet), the Board of Governors of the Patient-Centered Outcomes Research Institute (PCORI) envisioned a large data infrastructure that would enable more rapid, efficient, and economical comparative effectiveness research that could inform practice and advance health system improvement, and thus contribute to a continuously learning health system.

According to Joe Selby, executive director of PCORI, PCORnet was designed to capitalize on the volumes of data being accumulated in electronic health records (EHRs), claims data, and other disparate data sources across the country that are often underutilized or not routinely captured by payers and providers (e.g., social determinants of health, patient-reported outcomes, and genomic data). Structurally, PCORnet is a network of networks that offers a standard way of organizing and aggregating data on large numbers of patients to facilitate multisite research. PCORnet’s mission is to harness these data and research findings to facilitate health system improvement and, in the process, transform the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them. More than 130 health systems across the United States are organized

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¹ The planning committee’s role was limited to planning the meeting. This meeting summary has been prepared by the rapporteurs as a factual summary of what occurred at the meeting. Statements, recommendations, and opinions expressed are those of individual presenters, and not those of the National Academy of Medicine, and should not be construed as reflecting any group consensus.

into PCORI-funded Clinical Data Research Networks (CDRNs) that collect, organize, and aggregate data from EHRs and Patient-Powered Research Networks (PPRNs) that are focused on specific health conditions. Now in the second phase of its development, PCORnet is focusing on expansion and sustainability.

To assist PCORI in engaging researchers and health system executives in the development of PCORnet, two workshops were hosted by the National Academy of Medicine (NAM) Leadership Consortium for a Value & Science-Driven Health System (formerly the Institute of Medicine (IOM) Roundtable on Value & Science-Driven Health Care), in April and June 2014. At these workshops, participants discussed that the ongoing, iterative process of research draws from data on system performance, quality of care, efficiency of care, and patient experience, repeatedly—optimally, continuously—over time. Especially underscored was the importance of partnerships between researchers and health system leadership. These workshops are summarized in the 2015 report Integrating Research and Practice: Health System Leaders Working Toward High-Value Care (IOM, 2015a).

In continuing this work, in 2016 the NAM hosted a series of meetings on Accelerating Clinical Knowledge Generation and Use. The series was sponsored by PCORI and held under the auspices of the NAM Executive Leadership Network (ELN) for Continuously Learning Health Care, an executive-level initiative of the Leadership Consortium for a Value & Science-Driven Health System aimed at investing health system executives to advance progress toward a continuous learning health system. The ELN draws on leaders from health care institutions around the nation for synergy in this work.

The motivation for this new meeting series was to consider opportunities to build institutional capacity, cross-institutional synergy, and system-wide learning. More specifically, participants convened to discuss building infrastructure that simultaneously facilitates care delivery, care improvement, and new knowledge; ways to accelerate progress through cooperation and sharing across organizations; and approaches to steward system-wide progress toward continuous and seamless learning and improvement throughout health and health care.

A number of recurring themes emerged across the meeting series, as participants considered the data needs of executive-level decision makers, and the role and potential of PCORnet in facilitating clinical knowledge generation and use. The themes and opportunities highlighted in Box 1-1, drawn by the editors from the individual presentations, breakout sessions, and open discussions, are discussed further in the succeeding chapters.

SCOPE AND OBJECTIVES OF THE MEETINGS

The two-meeting series summarized in this publication was designed to inform the PCORnet Health Systems Demonstration Project (see Box 1-2), and builds on prior NAM work in partnership with PCORI, including the 2014 workshop series noted earlier (IOM, 2015a). The first meeting was held in January 2016. The chair of the planning committee Eric Larson, vice president for Research and Health Care Innovation at Kaiser Permanente Washington Health Research Institute, outlined the goals of the meeting as follows:

1. Identify compelling care questions. Propose important questions on system performance, measurement, and operations that might be answered from systematic capture of care delivery data. Explore the views of health system leaders on the highest priority questions to be addressed, including the value of standardized data collection.
2. Explore common priorities. Identify common priorities to help improve communication, synergy, and progress among health care organizations with related interests.
3. Consider research-ready data systems. Characterize and consider clinical data system characteristics necessary to generate usable knowledge in real time, including use of PCORI’s Common Data Model.
4. Explore strategic options. Provide input to the PCORI demonstration projects, as well as the expansion of strategic priorities.

As follow-up to the January meeting, a second meeting, convened in September 2016, focused on health executive leadership for development, spread, and scaling of a continuously learning health system. It extended the January discussion to consider three core questions:

1. Consider benefits: What specific and identifiable benefits (care, evidence, outcomes, and value) might be expected from the infrastructure envisioned? Are there examples from PCORnet, the National Patient-Centered Clinical Research Network?
2. Explore strategies: What strategic levers can health care executives use to accelerate progress?
3. Identify priorities: What key action items and priorities by the NAM and PCORI can accelerate progress?

ORGANIZATION OF THE MEETING SERIES

In addition to three expert panel sessions, the first meeting was specifically designed to inform the PCORnet Health Systems Demonstration Project by gathering input from CDRN principal investigators, health system senior leaders, and other stakeholders in a moderated breakout session and plenary discussions.² It was also intended to inform similar clinical research networks developing to accelerate findings important to health care improvement. Participants divided into five groups to discuss the data and analytic needs of importance to executive-level decision makers, consider the value of PCORnet and PCORnet studies in improving health care delivery locally and nationally, and contemplate next steps for further development of PCORnet. Group facilitators reported back on the breakout discussions in plenary session and participants considered a set of care

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² See Appendix A for the meeting agenda.

system research questions that were developed prior to the workshop, as part of the first phase of the PCORnet Health Systems Demonstration Project. An open discussion followed with participants sharing their thoughts on needs, opportunities, successes, failures, and strategies that could help inform the PCORnet Health Systems Demonstration Project.

As outlined in introductory comments by Michael McGinnis, executive director of the Leadership Consortium for a Value & Science-Driven Health System, the second meeting built upon the recent initiatives that have been undertaken in close partnership with PCORI to facilitate stronger engagement by health executives in knowledge generation and the alignment of research and operations. The meeting convened invited representatives from the NAM’s Executive Leadership Network and PCORnet research partners. The meeting included five sessions: vision and progress; NAM Executive Leadership for a Continuously Learning Health System; an overview of the PCORnet Health Systems Demonstration Project awardees; an open discussion of needs, opportunities, and strategies; and an overview of the day’s discussion. For each panel, the moderator and speakers provided framing comments and presentations leading to general discussion.

This publication summarizes the presentations and discussions that took place at the meetings. Chapter 2 discusses the data needs of executive-level decision makers in health systems as they put new knowledge into practice with the goal of achieving improved outcomes for patients. Chapter 3 considers the return on investment of evidence generation for health delivery systems. The stakeholder input sessions are summarized in Chapter 4, including the breakout discussions, the discussion of the set of care system research questions, and the general discussion of needs and opportunities. Chapter 5 considers the use of health system data for understanding performance, measuring performance, and creating the next generation of more meaningful performance measures. In the concluding chapter (Chapter 6) the moderators reflect on the progress and advances made since the two 2014 workshops, the recurring themes from the current meeting series, opportunities for stakeholder action, and future directions for PCORnet.