Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings (2014)
Chapter: 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
- Build insights and recognition on the necessity of increased patient, family, and citizen engagement in achieving better outcomes and lower costs in health care.
- Explore what has been learned about effective approaches for building patient demand and involvement in improving evidence, care, and value—including principles and barriers.
- 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.
- Identify important policy and research opportunities for developing the additional insights needed to accelerate progress.
| 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) |
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| 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. |
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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? |
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Moderator: Lyn Paget, Health Policy Partners Presentations: • The key elements of information, connectedness, and continuity for patient engagement in health care decisions • Planned patienthood: setting the expectation for shared decision making • Clinician competencies for effective shared decision making |
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| Audience participation and open discussion | |
| 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 o The patient support corps: An innovative staffing approach to support patients in shared decision making o Implementing decision aids for increased patient engagement and reduced costs |
| 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. |
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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 |
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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? |
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Moderator: Sue Trinidad, University of Washington Presentations: • Ethical challenges of a changing research paradigm • Meaningful choice in a learning health care system: The relationship between privacy and data sharing for research • The infrastructure needed for patient-engaged translational research • Patient engagement and data sharing for improvement, innovation and discovery |
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| Audience participation and open discussion | |
| 9:30 am |
Knowledge generation and care improvement (cont.) • Patient perspectives on consent for information use • 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 |
| 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. |
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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 |
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Moderator: John Santa, Consumer Reports Presentations: • What patients perceive as valuable—and how to effectively communicate information on cost and quality • The road to increased patient engagement through public reporting of performance information • Raising awareness on quality and waste • Seeking the citizen voice |
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| 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. |
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Moderator: Susan Reinhard, AARP • Behavioral economics and value generation • Communicating “value” to the public |
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• Social media as a tool for change |
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| 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. |
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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 |
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| 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 |
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| 4:30 pm | Adjourn |
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
