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F Workshop Agendas Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care An Institute of Medicine Workshop Series Sponsored by the Office of the National Coordinator for Health Information Technology Series objectives 1. Foster a shared understanding of the vision for the electronic infrastructure for continuous learning and quality-driven health and healthcare programs. 2. Explore current capacity, approaches, incentives, and policies; and identify key technologic, organizational, policy, and implementation priorities. 3. Discuss the characteristics of potentially disruptive, breakthrough developments. 4. Consider strategy options and priorities for accelerating progress on the approach to the infrastructure, and for moving beyond to a more seamless learning enterprise. Issues motivating the discussion • Rapid developments in information technology that substantially facilitate potential use of health data for knowledge generation, and expedited application of new knowledge for clinical care. • Policy initiatives that will lead in the near future to the electronic capture and storage of virtually all clinical data, as well as data from several related areas of health—health care, public health, clinical research—to realize the system’s full potential for individuals and populations. 285

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286 DIGITAL INFRASTRUCTURE FOR THE LEARNING HEALTH SYSTEM • Promising potential in federated/distributed approaches that allow data to remain local while still enabling querying and pooling of summary data across systems. • Ongoing innovation in search technologies with the potential to accelerate use of available data from multiple sources for new insights. • Meaningful use criteria and health reform provisions that provide starting points and incentives for the development of a learning system for quality improvement and population health, while underscoring the need to be strategic on issues and opportunities, while maintaining flexibility to accommodate breakthrough capacities. • Need for careful attention to limiting the burden for health data collection to the issues most important to patient care and knowledge generation. • Requirement for governance policies that foster the data utility for the common good, cultivate the trust fabric with the public and between data sharing entities, and accelerate collaborative progress. • Availability of standards for aggregation of large pools of data for purposes such as CER, biomarker validation, disease modeling, and improving research processes. v WORKSHOP #1: OPPORTUNITIES, CHALLENGES, PRIORITIES v July 27–28, 2010 Venable Conference Facility 575 Seventh Street NW, Washington, DC 20001 Day One: Tuesday, July 27 8:00am Coffee and light breakfast available Welcome, introductions, and overview 8:30am Welcome, framing of the meeting and workshop series, agenda overview o Michael McGinnis (Institute of Medicine) o Charles Friedman (Office of the National Coordinator for Health IT) o Laura Adams (Planning Committee Chair, Rhode Island Quality Institute)

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287 APPENDIX F Session 1: Visioning perspectives on the electronic health 9:00am utility National leader/decision maker from each of several key areas will offer a perspective on the vision and opportunities for the electronic health utility, briefly describe the current state of the infrastructure, its use relative to the potential, and the key actions and priorities moving forward. Moderator: Laura Adams (Rhode Island Quality Institute) ➢ Individual and patient perspective Adam Clark (Lance Armstrong Foundation) ➢Practicing clinician perspective James Walker (Geisinger) ➢Quality and safety perspective Janet Corrigan (National Quality Forum) ➢Clinical research perspective Christopher Chute (Mayo Clinic) ➢Population health perspective Martin LaVenture (Minnesota Department of Health) OPEN DISCUSSION 11:00am Session 2: Technical strategies: data input, access, use—and beyond Presentations to consider issues, needs, and approaches related to data input, access and use—as well as infrastructure requirements to foster web-mediated remote-site interventions—for continuous learning and improvement in health and health care. Moderator: Chris Greer (Office of Science and Technology Policy) ➢Building on the foundation of meaningful use Doug Fridsma (Office of the National Coordinator for Health IT) ➢Interoperability for the learning healthcare system Rebecca Kush (Clinical Data Interchange Standards Consortium) ➢Grids, federations, and clouds Jonathan Silverstein (University of Chicago) ➢Querying heterogeneous data Shaun Grannis (Regenstrief Institute)

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288 DIGITAL INFRASTRUCTURE FOR THE LEARNING HEALTH SYSTEM A panel of responders from the quality, clinical research, and population health communities to respond to presentations, share their experiences, and propose solutions. Ida Sim (University of California, San Francisco) John Halamka (Beth Israel Deaconess Medical Center) Robert Kahn (Corporation for National Research Initiatives) OPEN DISCUSSION Lunch 1:00pm Session 3: Ensuring engagement of population and patient 1:30pm needs Presentations to consider issues, needs, and approaches in use of the electronic infrastructure to address compelling priorities in patient and population health improvement. ➢ ransparency on cost/outcomes at individual and T population levels Mark McClellan (Brookings Institution) ➢ ntegrated use of personal and population-wide data I sources Kenneth Mandl (Harvard University) ➢Optimizing chronic disease care and control Sophia Chang (California HealthCare Foundation) ➢ argeting population health disparities T Christopher Gibbons (Johns Hopkins University) A panel of responders to respond to presentations, share their experiences, and propose solutions. Don Kemper (Healthwise) Eric Larson (Group Health) Patricia Brennan (University of Wisconsin) OPEN DISCUSSION Session 4: Weaving a strong trust fabric 3:30pm Presentations to consider issues, needs, and approaches related to building the broad-scale confidence necessary for operation of the electronic infrastructure for continuously learning and improving health and healthcare programs. Moderator: Mark Frisse (Vanderbilt University)

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289 APPENDIX F ➢ acilitating and chronicling data use for better health/ F health care Edward Shortliffe (American Medical Informatics Association) ➢ rivacy and consent strategies P Deven McGraw (Center for Democracy and Technology) ➢ IPAA and a learning healthcare system H Bradley Malin (Vanderbilt) ➢ ystem security S Ian Foster (Argonne National Lab) A panel of responders from ongoing collaborative efforts and experts with big-picture perspectives to respond to presentations, share their experiences, and propose solutions. Robert Shelton (Private Access, Inc.) Kristen Rosati (Coppersmith Schermer & Brockelman PLC) Richard Platt (Harvard Pilgrim) OPEN DISCUSSION Concluding Keynote 5:30pm David Blumenthal (National Coordinator for Health IT) Adjourn to reception 6:00pm Day Two: Wednesday, July 28 Welcome and Recap of First Day 8:30am Session 5: Stewardship and governance in the learning health 9:00am system Presentations on issues, needs, approaches, and arrangements—formal and informal, public and private, national and international—necessary to steward the development of a digital infrastructure to deliver health data and information that is timely, user-friendly, secure, reliable, research-ready, supports continuous learning and accelerated improvements in health and health care. Moderator: Michael Kahn (Children’s Hospital Denver) ➢ overnance coordination, needs, and options G Laura Adams (Rhode Island Quality Institute)

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290 DIGITAL INFRASTRUCTURE FOR THE LEARNING HEALTH SYSTEM ➢ armonizing compliance, and enforcement requirements H Theresa Mullin (Food and Drug Administration) ➢ esearch access and prioritization issues R Shawn Murphy (Partners Healthcare) ➢ case study in governance: The National Information A Governance Board for Health and Social Care (UK) Harry Cayton (National Information Governance Board) A panel of responders from ongoing efforts and experts with big-picture perspectives to respond to presentations, share their experiences, and propose solutions. Rachel Nosowsky (University of California) Don Detmer (University of Virginia) Meryl Bloomrosen (American Medical Informatics Association) Doug Peddicord (Oldaker, Belair & Wittie) OPEN DISCUSSION 11:00am Session 6: Fostering the global dimension of the health data trust Presentations to consider issues, needs, and approaches related to setting the stage for evolution of an electronic infrastructure that can serve as a global resource for continuous learning and improvement for health and healthcare programs. Moderator: Michael Ibara (Pfizer) ➢ ransform T Brendan Delaney (Kings College London) ➢ ealthGRID/SHARE H Tony Solomonides (University of the West England, Bristol) ➢ lobal collaborative safety strategies G Ashish Jha (Harvard University) ➢ lobal public health strategies G David Buckeridge (McGill University) OPEN DISCUSSION 12:30pm Lunch Session 7: Perspectives on Innovation 1:00pm Thought leader participants from across stakeholder groups as well as from outside the health field to reflect on the

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291 APPENDIX F meeting’s discussions, respond to questions, and offer unique insights and novel perspectives on innovation strategies for the electronic infrastructure supporting continuous learning and improvement in health and health care. Daniel Friedman (Population and Public Health Information Services) Molly Coye (Public Health Institute) Matthew Holt (Health 2.0) Michael Liebhold (Institute for the Future) OPEN DISCUSSION Session 8: Breakout sessions 2:30pm Five small groups will assemble with representation spanning the affinity groups of interest—individual and patient, practicing clinician, quality improvement experts, clinical researchers, and population health—to identify key principles and strategies for development of the electronic infrastructure envisioned—including identification of questions addressed to the panel of responders. Session 9: Reporting back to the group 4:00pm This session will feature reports back from small groups on proposed strategic approaches, followed by discussion across groups, and identification of common themes across approaches, challenges, and solutions. OPEN DISCUSSION Summary, Next Steps, and Concluding Remarks 5:30pm Adjourn 6:00pm

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292 DIGITAL INFRASTRUCTURE FOR THE LEARNING HEALTH SYSTEM v WORKSHOP #2: THE SYSTEM AFTER NExT v September 7–8, 2010 Keck Center, The National Academies 500 Fifth Street NW, Washington, DC 20001 Day One: Tuesday, September 7 8:00am Coffee and light breakfast available Welcome, introductions, and overview 8:30am Welcome, framing of the meeting and workshop series, agenda overview o Harvey Fineberg (Institute of Medicine) o Charles Friedman (Office of the National Coordinator for Health IT) o Laura Adams (Planning Committee Chair, Rhode Island Quality Institute) o Michael McGinnis (Institute of Medicine) Three breakout groups: patient and public, technical issues, 9:30am governance Three breakout groups clustered according to participant expertise/interest with respect to technical advancement, governance and patient/public engagement. Each group will be tasked with using the preparatory group’s proposed categories and component issues as a starting point to develop and present the framework and most important relevant options for a national strategy. A 10- to 15-minute presentation by a representative of the relevant breakout group will lead off the corresponding plenary session. 12:00pm Lunch/Poster session System requirements for technical advancement and 1:00pm innovation Technical issues constitute the basic starting point for progress in the electronic infrastructure for health improvement. These include the overlapping sets of issues related to information

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293 APPENDIX F processing models, vocabulary value sets, human–computer interaction, and security frameworks. Progress is dependent not only on identifying and engaging the specific elements within each set, but on achieving the right balance between the potential for facilitative standardization and the need for adaptive flexibility and innovation. The session will begin with a 10- to 15-minute presentation from a representative from the “Technical advancement and innovation” breakout group. Moderated discussion based on the prioritized questions and solutions presented will follow, including, if/as appropriate, brief input from resource people for the case studies identified. OPEN DISCUSSION Break 3:00pm Requirements for establishment of stewardship and 3:15pm governance Stewardship and governance provisions are intimately related to the pace at which the developing technical capacity of the electronic infrastructure emerges and is applied for continuous improvement in health and health care. The trust and cooperative environment engendered in the existence, nature, stakeholder representation, and implementation of such provisions will determine the availability and impact of this electronic utility. The session will begin with a 10- to 15-minute presentation from a representative from the “Stewardship and governance” breakout group. Moderated discussion based on the prioritized questions and solutions presented will follow, including, if/as appropriate, brief input from resource people for the case studies identified. OPEN DISCUSSION Concluding comments 5:30pm Adjourn to reception 6:00pm

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294 DIGITAL INFRASTRUCTURE FOR THE LEARNING HEALTH SYSTEM Day Two: Wednesday, September 8 Welcome 8:30am Requirements for patient and public engagement 9:00am Where stakeholder acceptance is involved, it generally comes down to “What’s in it for me?” A precondition for progress in the e-health utility is the appreciation and acceptance—the understanding and demand for the delivery of the benefits, and trust and confidence related to safeguards against risks. The session will begin with a 10- to 15-minute presentation from a representative from the “Patient and public engagement” breakout group. Moderated discussion based on the prioritized questions and solutions presented will follow, including, if/ as appropriate, brief input from resource people for the case studies identified. OPEN DISCUSSION 11:00am Summary, next steps, and concluding remarks Discussion will be summarized, priorities identified, and the plan for the progression to the final workshop laid out. 12:00pm Adjourn v WORKSHOP #3: STRATEGY SCENARIOS v October 5, 2010 House of Sweden 2900 K Street NW, Washington, DC 20007 Tuesday, October 5 8:00am Coffee and light breakfast available Welcome, introductions, and overview 8:30am Welcome, framing of the meeting and workshop series, agenda overview

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295 APPENDIX F o Charles Friedman (Office of the National Coordinator for Health IT) o Laura Adams (Planning Committee Chair, Rhode Island Quality Institute) o Michael McGinnis (Institute of Medicine) Review of strategic options from Workshops 1 and 2 9:00am Overview of strategic options identified to accelerate development of the electronic ecosystem necessary for a continuously learning and improving health system. ➢ echnical and knowledge generation issues and options T Christopher Chute (Mayo Clinic) ➢ ndividual engagement issues and options I Robert Shelton (Private Access, Inc.) ➢ overnance issues and options G Laura Adams (Rhode Island Quality Institute) OPEN DISCUSSION 10:00am Review of practical considerations A discussion of the existing efforts and accompanying considerations that will be relevant to the development of strategy options. ➢ merging communities of excellence E James Walker (Geisinger Health System) ➢ merging drivers of interoperability, scale, and utility E Daniel Masys (Vanderbilt University) ➢ mplications inherent ULS system dynamics I William Knaus (University of Virginia) ➢ evers for government and ONC as change agent L Charles Friedman (Office of the National Coordinator for Health IT) OPEN DISCUSSION 11:00am Breakout groups Participants are broken into three groups, each focused one of the following groups of issues: technical, knowledge generation and use, governance, and individual engagement. For their respective areas, groups are asked to —Propose basic principles for approach

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296 DIGITAL INFRASTRUCTURE FOR THE LEARNING HEALTH SYSTEM —Consider and revise, as indicated, strategic options from overview, including alternative scenarios —Identify key stakeholders and responsibilities —Postulate timetables and expectations—and related assumptions 12:30pm Lunch Technical options, responsibilities, and expectations 1:00pm OPEN DISCUSSION Knowledge generation and use options, responsibilities, and 2:00pm expectations OPEN DISCUSSION Break 3:00pm Governance options, responsibilities, and expectations 3:15pm OPEN DISCUSSION Individual engagement options, responsibilities, and 4:15pm expectations OPEN DISCUSSION Concluding comments 5:15pm