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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
