Patients Charting the Course:
Citizen Engagement and the Learning Health System
A Learning Health System Activity
IOM Roundtable on Value & Science-Driven Health Care
April 1–2, 2010
Keck Center of the National Academies
Washington, DC 20001
Motivating issues and assumptions underlying the discussion
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Appendix A Workshop Agenda Patients Charting the Course: Citizen Engagement and the Learning Health System A Learning Health System Activity IOM Roundtable on Value & Science-Driven Health Care April 1–2, 2010 Keck Center of the National Academies Washington, DC 20001 Motivating issues and assumptions underlying the discussion 1. Advances. Progress in medical science, basic research, information technology, and operations research offers the potential for immediate, continuous, and transformative improvement in health care. 2. Performance. In terms of both effectiveness and efficiency, the nation’s healthcare system is underperforming. The United States has the highest health expenditures per capita—twice the per capita average for other developed countries—yet consistently rates no better than the middle tier of developed nations on such key indica- tors as infant mortality, life expectancy, and overall health system performance. 3. Core aim. The core aim of health care is improved outcomes: to maintain or enhance patient status with respect to disease, injury, functional status, or sense of well-being. Yet often the dominant characteristics are more oriented to clinician preferences or inter- ests, and economic rewards for volume over value. 4. Anchor foci. The primary foci of care in a manner that empha- sizes outcomes should be on the mutually dependent aims of patient-centeredness, better science, better value, and continuous improvement. 5. Key elements. Efforts of the IOM and others have fostered a better understanding of the foundation stones of the Learning Health System, and, as discussions continue on health reform, special 247
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248 PATIENTS CHARTING THE COURSE consideration is warranted on the current priorities and strategies to accelerate progress. 6. Communication. Central to progress are the communication strate- gies necessary to inform and engage the public and patient com- munities as understanding advocates, partners, and change agents. Objectives 1. Identify the state of play with respect to the foundation stones of the Learning Healthcare System, and the most important priorities and policy levers necessary to accelerate progress. 2. Explore and clarify the integral links among the three key aims of care delivered: science-driven, patient-centered, and value-enhancing. 3. Discuss communication and public engagement strategies impor- tant to improving awareness and action necessary for transforma- tion to a Learning Health System. DAY ONE 9:00 Keynote: the learning health system—now and to come Overview of the nature and promise of the learning healthcare system for advancing a culture of patient-centeredness, science, and value. Discuss approaches to the key challenges and identify health reform priorities to make a learning healthcare system possible. Harvey Fineberg, Institute of Medicine 9:30 Session 1: Clinical research, patient care, and learning that is real- time and continuous What is needed to improve the efficiency, effectiveness, and volume of clinical research; and, how might capacity be structured to sup- port a system of real-time and continuous learning that anticipates research needs and produces and applies evidence that is timely, relevant, and applicable to real-world care? Chair: Joel Kupersmith, Veterans Health Administration Ø Comparative effectiveness research—accounting for patient, clini- cian, and policy needs Patrick Conway, Office of the Secretary, Department of HHS Ø Health systems as research platforms—enhancing science, value and innovation Sherine Gabriel, Mayo Clinic
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249 APPENDIX A Ø Enhancing the culture of patient contributions to learning in health care Diane Simmons, Center for Information & Study of Clinical Research Participation 11:00 Session 2: Clinical data as a public good for discovery What is meant by the notion of clinical data as a public good, what is the potential, and how can issues such as de-identification, data integrity, and privacy and security concerns be best addressed? What strategies are needed to better engage patients and the public as advocates? Chair: Karen Smith, AstraZeneca Ø Information needs for the learning healthcare system Farzad Mostashari, Office of the National Coordinator for HIT Ø Opening access to high-value data sets Todd Park, Department of Health and Human Services Ø Ensuring data integrity—implications of privacy protection and proprietary concerns Don Detmer, University of Virginia [Lunch 12:30–1:00] 1:00 Session 3: Engaging patients to improve science and value in the Learning Health System What is meant—theoretically and practically—by patient engage- ment in health care, how might health systems better learn from patient participation across health system activities—as consumers, actors and research subjects—and what are the implications related to clinical science, healthcare delivery, and patient engagement strategies? Chair: Myrl Weinberg, National Health Council Ø Investing patients in the research and continuous improvement enterprise—related to clinical science, health services, value, and patient orientation Sharon Terry, Genetic Alliance Ø Public and patient communication strategies to improve health system performance—encouraging patient engagement and participation James Conway, Institute for Healthcare Improvement
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250 PATIENTS CHARTING THE COURSE Ø Communicating with patients about their concerns, preferences, and expectations–evidence translation, dissemination, application Karen Sepucha, Harvard Medical School 2:30 Session 4: Health information technology as the engine for learning What are the trends and strategies for HIT adoption and how can this infrastructure resource be developed simultaneously as a knowledge engine, a tool for care improvement, and a portal for practical patient engagement? Chair: Murray Ross, Kaiser Permanente Ø Meaningful use of health information technology David Blumenthal, Office of the National Coordinator for HIT Ø Data linkage, distributed data networks, and infrastructure for clinical research Daniel Masys, Vanderbilt University Ø HIT and Web 2.0 as a vehicle for patient engagement—at the clinical encounter and beyond Joseph Kvedar, Center for Connected Health 4:00 Session 5: Patients, clinical decisions, and health management in the information age What lessons can be learned about patient/caregiver needs and expectations from efforts to support active engagement of patients in their healthcare decisions and management; and how might these factors inform priorities and strategies for improving patient involvement and investment in health care? Chair: Michael Fordis, Eisenberg Center and Baylor College of Medicine Ø Public and patient information access and use as a core care component George D. Lundberg, former editor-in-chief (JAMA, eMedicine, and MedScape) Ø HIT-based approaches to care management and shared decision-making Paul Tang, Palo Alto Medical Foundation Ø Health and disease management outside the clinic doors Doriane Miller, University of Chicago Medical Center 5:30 WRAP-UP COMMENTS
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251 APPENDIX A 5:45 RECEPTION DAY TWO 9:00 Session 6: Applying evidence for patient-centered care—standards and expectations How do the key precepts of patient-centered care, personalized medicine, and evidence-based medicine interplay and complement each other to yield care that is more effective and efficient; and, what are the implications for shaping a health system to meet these expectations? Chair: William Novelli, Georgetown University Ø The role of evidence in patient-centered care—“whatever the patient wants”? Dale Collins Vidal, Dartmouth Institute for Health Policy and Clinical Practice Ø Evidence standards and application approaches that help get the right care to the right patient at the right time Clifford Goodman, The Lewin Group Ø Translation and communication needs for care under evidence uncertainty Fran Visco, National Breast Cancer Coalition 10:30 Session 7: Team-based care and the learning culture What is meant by team-based care, how might it look in a learning healthcare system, and should, or how should, caregiver culture and practice vary by circumstance? What are the implications for health professions education and training? Chair: J. Michael McGinnis, Institute of Medicine Ø Practical experience with collaborative models in the health professions Allan Frankel, Brigham and Women’s Hospital Ø Measures and strategies for clinical excellence and continuous improvement Joyce Lammert, Virginia Mason Medical Center Ø Care cooperation and continuity across clinicians, facilities, and systems Alice Bonner, Massachusetts Department of Public Health [Lunch 12:00–12:30]
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252 PATIENTS CHARTING THE COURSE 12:30 Session 8: Incentives aligned with value and learning What are the key opportunities to better align incentives with ele- ments important for care that is effective, efficient, and adds to learning? Chair: Helen Darling, National Business Group on Health Ø Paying for value and science-driven care Michael Chernew, Harvard University Ø Generating evidence to guide care Richard Gilfillan, Geisinger Health Plan Ø Creating a learning culture Anne Weiss, Robert Wood Johnson Foundation 2:00 Session 9: Strategies and priorities moving forward A policy-oriented panel to pull together and discuss key themes from workshop presentations on next steps, public perception and opinion and reflect on key opportunities, possible messages, and approaches to encourage greater public engagement in driving sys- tem improvements Moderator: J. Michael McGinnis, Institute of Medicine Ø Kathy Buto, Johnson & Johnson Ø Helen Darling, National Business Group on Health Ø Deborah Trautman, Johns Hopkins Medicine Center for Health Policy Ø Myrl Weinberg, National Health Council