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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
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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 indicators 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 interests, and economic rewards for volume over value.
  4. Anchor foci. The primary foci of care in a manner that emphasizes 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
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

           consideration is warranted on the current priorities and strategies to accelerate progress.

  1. Communication. Central to progress are the communication strategies necessary to inform and engage the public and patient communities 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 important to improving awareness and action necessary for transformation 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 support 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

Comparative effectiveness research—accounting for patient, clinician, and policy needs

Patrick Conway, Offfice of the Secretary, Department of HHS

Health systems as research platforms—enhancing science, value and innovation

Sherine Gabriel, Mayo Clinic

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

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

Information needs for the learning healthcare system

Farzad Mostashari, Office of the National Coordinator for HIT

Opening access to high-value data sets

Todd Park, Department of Health and Human Services

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 engagement 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

Investing patients in the research and continuous improvement enterprise—related to clinical science, health services, value, and patient orientation

Sharon Terry, Genetic Alliance

Public and patient communication strategies to improve health system performance—encouraging patient engagement and participation

James Conway, Institute for Healthcare Improvement

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

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

Meaningful use of health information technology

David Blumenthal, Office of the National Coordinator for HIT

Data linkage, distributed data networks, and infrastructure for clinical research

Daniel Masys, Vanderbilt University

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

Public and patient information access and use as a core care component

George D. Lundberg, former editor-in-chief (JAMA, eMedicine, and MedScape)

HIT-based approaches to care management and shared decision-making

Paul Tang, Palo Alto Medical Foundation

Health and disease management outside the clinic doors

Doriane Miller, University of Chicago Medical Center

5:30

WRAP-UP COMMENTS

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

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

The role of evidence in patient-centered care—“whatever the patient wants”?

Dale Collins Vidal, Dartmouth Institute for Health Policy and Clinical Practice

Evidence standards and application approaches that help get the right care to the right patient at the right time

Clifford Goodman, The Lewin Group

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

Practical experience with collaborative models in the health professions

Allan Frankel, Brigham and Women’s Hospital

Measures and strategies for clinical excellence and continuous improvement

Joyce Lammert, Virginia Mason Medical Center

Care cooperation and continuity across clinicians, facilities, and systems

Alice Bonner, Massachusetts Department of Public Health

[Lunch 12:00–12:30]

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×

12:30

Session 8: Incentives aligned with value and learning

What are the key opportunities to better align incentives with elements important for care that is effective, efficient, and adds to learning?

Chair: Helen Darling, National Business Group on Health

Paying for value and science-driven care

Michael Chernew, Harvard University

Generating evidence to guide care

Richard Gilfillan, Geisinger Health Plan

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 system improvements

Moderator: J. Michael McGinnis, Institute of Medicine

Kathy Buto, Johnson & Johnson

Helen Darling, National Business Group on Health

Deborah Trautman, Johns Hopkins Medicine Center for Health Policy

Myrl Weinberg, National Health Council

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×
Page 247
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×
Page 248
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×
Page 249
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×
Page 250
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×
Page 251
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2011. Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12848.
×
Page 252
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As past, current, or future patients, the public should be the health care system's unwavering focus and serve as change agents in its care. Taking this into account, the quality of health care should be judged not only by whether clinical decisions are informed by the best available scientific evidence, but also by whether care is tailored to a patient's individual needs and perspectives. However, too often it is provider preference and convenience, rather than those of the patient, that drive what care is delivered. As part of its Learning Health System series of workshops, the Roundtable on Value & Science-Driven Health Care hosted a workshop to assess the prospects for improving health and lowering costs by advancing patient involvement in the elements of a learning health system.

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