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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
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Appendix A

Workshop Agenda

Partnering with Patients to Drive
Shared Decisions, Better Value, and Care Improvement

An Institute of Medicine Workshop
Sponsored by the Gordon and Betty Moore Foundation and
Blue Shield of California Foundation

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

February 25-26, 2013
National Academy of Sciences
2101 Constitution Avenue, NW
Washington, DC

Meeting Goals

  1. Build insights and recognition on the necessity of increased patient, family, and citizen engagement in achieving better outcomes and lower costs in health care.
  2. Explore what has been learned about effective approaches for building patient demand and involvement in improving evidence, care, and value—including principles and barriers.
  3. Consider strategies and policies for activities to be undertaken at multiple levels to advance patients, in partnership with providers, as leaders and drivers of care delivery improvement through the protected use of clinical data, informed, shared decisions, and value improvement.
  4. Identify important policy and research opportunities for developing the additional insights needed to accelerate progress.
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
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Day 1: Monday, February 25, 2013
Please pick up a boxed lunch in the atrium.
12:30 pm Welcome, introductions, and overview
Welcome from the IOM
Michael McGinnis (Institute of Medicine)
Opening remarks and meeting overview
Dominick Frosch (Gordon and Betty Moore Foundation)
Christine Bechtel (Planning Committee Chair, National Partnership for Women & Families)
12:45 pm Lunch keynote
To Improve, Health Care Must Partner with Patients and Families
Jonathan Welch, Harvard Medical School
1:30 pm Patient-clinician communication and the tools for change
Working from the dual challenges of patients’ effective use of available information and clinicians’ effective integration of available knowledge, explore approaches, and strategies for widespread acceleration of shared decision making.

Session questions:

•  What is the pathway toward increased demand for shared decision making?

•  What are the necessary infrastructure elements to support widespread shared decision making?

•  What strategies exist to create a culture of expectation for shared decision making on the part of both providers and patients/families?

•  What competencies are required of patients, families, and clinicians to support shared decision making?

Moderator: Lyn Paget, Health Policy Partners Presentations:

•  The key elements of information, connectedness, and continuity for patient engagement in health care decisions
Gary Langer, Langer Research Associates

•  Planned patienthood: setting the expectation for shared decision making
Sherrie Kaplan, University of California, Irvine

•  Clinician competencies for effective shared decision making
Eric Holmboe, American Board of Internal Medicine

Audience participation and open discussion
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
3:00 pm Break
3:15 pm

Patient-clinician communication and the tools for change (continued)

•  Innovative models of shared decision making:

o Building a culture that promotes shared decision making
Grace Lin, University of California, San Francisco

o The patient support corps: An innovative staffing approach to support patients in shared decision making
Jeff Belkora, Margot Zarin-Pass, and Ekene Obi-Okoye, University of California San Francisco

o Implementing decision aids for increased patient engagement and reduced costs
David Arterburn, GroupHealth

Audience participation and open discussion
4:30 pm Summary and preview of next day
5:00 pm Adjourn
Day 2: Tuesday, February 26, 2013
7:30 am Coffee and light breakfast available
8:00 am Welcome, brief agenda overview
Christine Bechtel, National Partnership for Women & Families (Planning Committee Chair)
8:15 am Knowledge generation and care improvement
As many patients support sharing their protected clinical and outcomes data for research that improves care and outcomes for all patients, identify potential pathways and strategies for improved sharing, and use of insights gained from the care experience.

Session questions:

•  What is the state of play with respect to using patient data for research and care improvement?

o Patient perceptions

o Research realities

o Regulatory environment

•  How does public opinion on research for care improvement demonstrate support for increased data sharing? What barriers are present in the

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×

    public’s understanding of the benefits and harms of data sharing, and how might they be overcome?

•  What are the necessary infrastructure elements to support widespread data sharing for care improvement?

•  What is the pathway toward increased use of protected clinical and outcomes data for care improvement?

Moderator: Sue Trinidad, University of Washington Presentations:

•  Ethical challenges of a changing research paradigm
Nancy Kass Johns Hopkins Berman Institute of Bioethics

•  Meaningful choice in a learning health care system: The relationship between privacy and data sharing for research
Alice Leiter, Center for Democracy & Technology

•  The infrastructure needed for patient-engaged translational research
Ken Mandl, Boston Children’s Hospital

•  Patient engagement and data sharing for improvement, innovation and discovery
Peter Margolis and Jill Plevinsky, Cincinnati Children’s Hospital Medical Center

Audience participation and open discussion
9:30 am

Knowledge generation and care improvement (cont.)

•  Patient perspectives on consent for information use
Evette Ludman, Group Health Research Institute

•  New paradigms for patient engagement in research for care improvement:

o Sally Okun and Laura Phillips, PatientsLikeMe

o Greg Biggers, Genomera

•  Research that improves care as a competitive advantage: Communicating the importance of data sharing to the public
Holly Potter, Kaiser Permanente

Audience participation and open discussion
10:45 am Break
11:00 am Changing expectations: Bringing transparency to cost and quality information
Taking into account the changing landscape for health care payment, consider methods for deepening patient, family, and provider knowledge of health care costs and quality, and their implications.
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×

    Session questions:

•  What are possible strategies for increased patient and family recognition of high-quality, efficient health care?

•  How do we increase the culture of expectation for patient and family health care choices that are based on value (e.g. quality and cost)?

•  What information is needed to support patients and families in making value-based health care choices? Key considerations:

o Kinds of information needed, i.e., cost, quality

o Presentation of information

o Accessibility

o Ease of use

o Resulting behavior change

Moderator: John Santa, Consumer Reports Presentations:

•  What patients perceive as valuable—and how to effectively communicate information on cost and quality
Judy Hibbard, University of Oregon
Shoshanna Sofaer, Baruch College, CUNY

•  The road to increased patient engagement through public reporting of performance information
Barbra Rabson, Massachusetts Health Quality Partners

•  Raising awareness on quality and waste
Daniel Wolfson, ABIM Foundation

•  Seeking the citizen voice
Marge Ginsburg, Center for Healthcare Decisions

Audience participation and open discussion
1:00 pm Lunch keynote
How American health care killed my father
David Goldhill, Game Show Network
2:00 pm Driving the demand
Explore cross-cutting strategies to advance patients, in partnership with providers, as leaders and drivers of care delivery improvement through informed, shared decision making, the authorized use of clinical data for research, and value improvement.

Moderator: Susan Reinhard, AARP
Presentations:

•  Behavioral economics and value generation
Kevin Volpp, Philadelphia VA Medical Center

•  Communicating “value” to the public
Tresa Undem, PerryUndem

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×

•  Social media as a tool for change
Kelly Young, Rheumatoid Arthritis Warrior

Audience participation and open discussion
3:00 pm Building a pathway forward
Reflecting on the presentations and discussions over the course of the 2-day workshop, participants will engage in an open dialogue to define the pathway forward for building patient demand for a continuously learning health system.

Moderator: Christine Bechtel, National Partnership for Women & Families Panelists: Planning committee members

•  Mark Gorman, Patient advocate

•  Art Levin, Center for Medical Consumers

•  Susan Sheridan, Patient-Centered Outcomes Research Institute

•  Terry Adirim, Health Resources and Services Administration

Audience participation and open discussion
4:15 pm Summary and next steps
Thanks from the Chair
Christine Bechtel, National Partnership for Women & Families
Comments and thanks from the IOM
Michael McGinnis, Institute of Medicine
4:30 pm Adjourn
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×

Planning Committee

Christine Bechtel, MA, National Partnership for Women & Families (Chair)

Terry Adirim, MD, MPH, Health Resources and Services Administration

Leah Binder, MA, MGA, The Leapfrog Group

Veronica Goff, MS, National Business Group on Health

Mark Gorman, Patient advocate

Paul Grundy, MD, MPH, IBM

Art Levin, MPH, Center for Medical Consumers

Jim Mangia, MPH, St. John’s Well Child & Family Center

Lyn Paget, MPH, Health Policy Partners

Eric Racine, PharmD, MBA, Sanofi U.S.

Susan C. Reinhard, RN, PhD, AARP

Craig Robbins, MD, MPH, Kaiser Permanente

John Santa, MD, MPH, Consumers Union

Susan Sheridan, MBA, MIM, Patient-Centered Outcomes Research Institute

Susan Brown Trinidad, MA, University of Washington

Staff officer: Claudia Grossmann, PhD

cgrossmann@nas.edu

(202) 334-3867

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×

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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 175
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 176
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 177
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 178
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 179
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 180
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 181
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2014. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/18397.
×
Page 182
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The Institute of Medicine's Roundtable on Value & Science-Driven Health Care held a workshop, titled Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement, on February 25 and 26, 2013. The workshop, supported by the Gordon and Betty Moore Foundation and the Blue Shield of California Foundation, focused on identifying and exploring issues, attitudes, and approaches to increasing patient engagement in and demand for the following: shared decision making and better communication about the evidence in support of testing and treatment options; the best value from the health care they receive; and the use of data generated in the course of their care experience for care improvement.

The workshop hoped to build awareness and demand from patients and families for better care at lower costs and to create a health care system that continuously learns and improves. Participants included members of the medical, clinical research, health care services research, regulatory, health care economics, behavioral economics, health care delivery, payer, and patient communities. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement Workshop Proceedings offers a summary of the 2-day workshop including the workshop agenda and biographies of speakers.

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