The Learning Healthcare System in 2010 and Beyond: Understanding, engaging, and communicating the possibilities


Draft Workshop Agenda

The Learning Healthcare System in 2010 and Beyond:
Understanding, engaging, and communicating the possibilities

April 1-2, 2010

The Keck Center of the National Academies, Room 100
500 Fifth St., NW
Washington, DC 20001

A Learning Healthcare System Activity
IOM Roundtable on Value & Science-Driven Health Care

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 health care 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 Healthcare System, and, as discussions continue on health reform, special consideration is warranted on the current priorities and strategies to accelerate progress.
6. 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.


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 Healthcare System.


Day 1

9-9:30am The Learning Healthcare System—now and to come (KEYNOTE)
Provide an 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

9:30-11am 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?

Comparative effectiveness research—accounting for patient, clinician, and policy needs
Patrick Conway, Office of the Secretary, Department of HHS

Health systems as research platforms—enhancing science, value and innovation
John Noseworthy, Mayo Clinic

Enhancing the culture of patient contributions to learning in health care
Ken Getz, Center for Information & Study of Clinical Research Participation

11:00-12:30 pm 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?

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

12:30-1 pm Lunch

1-2:30pm Engaging patients to improve science and value in a learning healthcare 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?

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

Communicating with patients about their concerns, preferences and expectations–evidence translation, dissemination, application
Karen Sepucha, Harvard Medical School

2:30-4pm 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?

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

4-5:30pm 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?

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, New Health Partnerships

5:30pm Wrap-up comments

5:45-6:30pm Participant Reception


Day 2

9-10:30am 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

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

10:30am-12:00pm 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?

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

Noon-12:30  Lunch

12:30-2pm 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?

Paying for value and science-driven care (economic incentives to encourage a focus on tracking and rewarding outcomes and delivery of care with the needed evidence base.
Michael Chernew, Harvard University

Generating evidence to guide care (incentives for health systems that foster clinical research, care tracking and improvement, coverage with evidence development)
Richard Gilfillan, Geisinger Health Plan

Creating a learning culture (incentives to education, communication and engagement efforts to key stakeholders (e.g., patients, health system leadership, clinicians)
Anne Weiss, Robert Wood Johnson Foundation

2:00-3pm 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




Planning Committee

Jay Bernhardt, Centers for Disease Control and Prevention
Michael Fordis, Eisenberg Center, Baylor College of Medicine
Joel Kupersmith, Veterans Health Administration
Michael Lauer, National Heart, Lung and Blood Institute
Murray Ross, Kaiser Permanente
Karen Smith, AstraZeneca
Myrl Weinberg, National Health Council

Staff officer: LeighAnne Olsen, Institute of Medicine, 202.334.1882

About this Event

The Learning Healthcare System in 2010 and Beyond 
Understanding, engaging, and communicating the possibilities

April 1 and 2, 2010


The Keck Center of the National Academies, Room 100
500 Fifth St., NW
Washington, DC 20001

The United States has the highest health expenditures per capita—twice the per capita average for other developed countries—yet consistently rates poorly (currently 37th) on overall health system performance and on key component measures such as infant mortality (39th) and life expectancy (36th). Advances in biological research, clinical medicine, IT and operations research provide powerful tools for health system improvement—potentially transformative if applied in a manner that promotes the mutually dependent aims of science, value and patient-centered care.

Invited presentations and workshop discussion will provide a look back on progress toward the learning healthcare system; explore the integral links among the three key aims of care delivered—science-driven, patient-centered, and value-enhancing; and identify priorities, policy levers and public engagement strategies necessary for advancement.

This workshop is being convened on behalf of the Roundtable on Value & Science-Driven Health Care (formerly the Roundtable on Evidence Based Medicine) 

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