National Patient and Stakeholder Dialogue
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The document outlines the National Patient and Stakeholder Dialogue held by the Patient-Centered Outcomes Research Institute (PCORI) on February 27, 2012, emphasizing the importance of public input in shaping research priorities and agenda. It describes the formal public comment period, focus groups, and the intended incorporation of stakeholder feedback into PCORI's strategies. Additionally, the document highlights PCORI's research agenda aimed at improving health outcomes by addressing gaps in evidence and ensuring patient engagement in the research process.
National Patient and Stakeholder Dialogue
- 1. The National Press Club – Washington, D.C. February 27, 2012 Patient-Centered Outcomes Research Institute National Patient and Stakeholder Dialogue Join the Conversation on Twitter: #PCORIdialogue
- 2. The National Patient and Stakeholder Dialogue Washington, D.C. February 27, 2012 Joe Selby, MD, MPH, Executive Director Introduction to the National Patient and Stakeholder Dialogue Join the Conversation on Twitter: #PCORIdialogue
- 3. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE The National Patient and Stakeholder Dialogue Washington, D.C. February 27, 2012 Sharon Levine, MD, Member, PCORI Board of Governors Receiving and Incorporating Public Input Join the Conversation on Twitter: #PCORIdialogue
- 4. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Process for Public Input on National Priorities and Research Agenda • Formal Public Comment Period (January 23 – March 15) • Submit formal comments at www.pcori.org/provide-input. • All comments are displayed on the website in real time. • Additional forums to obtain input • Patient, caregiver and clinician focus groups. • Individual meetings with diverse mix of stakeholders. • Incorporating input received • PCORI will review all input received and publish a report with explanation of how it led to changes in priorities and agenda. • Revised National Priorities and Research Agenda will be adopted by Board of Governors during a special public meeting in April. 4
- 5. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE The National Patient and Stakeholder Dialogue Washington, D.C. February 27, 2012 Harlan M. Krumholz, MD, SM, Member, PCORI Board of Governors National Priorities and Research Agenda Join the Conversation on Twitter: #PCORIdialogue
- 6. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE We are not always treating the right people. Welcome to the PCORI team!
- 7. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE 7 The best way to predict the future is to invent it. Alan Kay, 1971
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- 11. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Science October 9, 1998 11
- 12. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Science 9 October 1998: Vol. 282 no. 5387 pp. 245-246 Outcomes Research: Measuring the End Results of Health Care Carolyn M. Clancy and John M. Eisenberg 12
- 13. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE “Outcomes research—the study of the end results of health services that takes patients' experiences, preferences, and values into account—.” 13
- 14. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE “Outcomes research—the study of the end results of health services that takes patients' experiences, preferences, and values into account—is intended to provide scientific evidence relating to decisions made by all who participate in health care.” 14
- 15. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE The Patient Protection and Affordable Care Act
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- 19. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE 19 The PCORI 4 Questions
- 20. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE • “Given my personal characteristics and conditions, what may happen to me?” • “What are my options and the benefits and harms of those options?” • “What can I do…?” • “What can the health system do…?” 20
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- 28. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE 28 Priorities and Agenda What is important and what will we do?
- 29. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE National Priorities and Research Agenda Must be approved before major funding can begin National Priorities Research Agenda Funding Announcements 29
- 30. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research. PUBLIC LAW 111–148—MAR. 23, 2010. National Priorities for Research “The Institute shall identify national priorities for research, taking into account factors of disease incidence, prevalence, and burden in the United States (with emphasis on chronic conditions), gaps in evidence in terms of clinical outcomes, practice variations and health disparities in terms of delivery and outcomes of care, the potential for new evidence to improve patient health, well-being, and the quality of care, the effect on national expenditures associated with a health care treatment, strategy, or health conditions, as well as patient needs, outcomes, and preferences, the relevance to patients and clinicians in making informed health decisions, and priorities....” 30
- 31. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Research Agenda Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research. PUBLIC LAW 111–148—MAR. 23, 2010. “The Institute shall establish and update a research project agenda for research to address the priorities identified under subparagraph (A), taking into consideration the types of research that might address each priority and the relative value (determined based on the cost of conducting research compared to the potential usefulness of the information produced by research) associated with the different types of research, and such other factors as the Institute determines appropriate.” 31
- 32. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE To what extent will PCOR be CER? 32
- 33. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE To what extent will our priorities and agenda be problem specific? 33
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- 37. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Improving Communication and Dissemination Accelerating PCOR and Methodological Research Addressing Disparities Improving Health Care Systems Improving Patient and Caregiver Decisions Emphasis on comparing strategies Priorities 37
- 38. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE Proposed PCORI Criteria Impact on Health of Individuals and Populations Probability of Improvability via Research Address Current Gaps in Knowledge Address Variation in Care Improved Health Care System Performance Current Health Disparities Potential to Influence Decision Making Novel Use of Technology Efficient Use of Research Resources From Board In Statute Developing PCORI’s Research Agenda Priority Themes Proposed PCORI Criteria PCORI Research Agenda 38
- 39. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE ...compare strategies where better evidence is needed to support decision-making by patients, caregivers, and health care professionals. Research Agenda Item From a National Priority Improving Patient and Caregiver Decisions PCORI Criteria 39
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- 41. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE PCORI’s Path from Priorities to Research Patients can Use 41 Future priorities and agendas will be informed by the development process, ongoing stakeholder engagement, and PCORI’s research results.
- 42. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE -----Original Message----- From: xxxx To: Krumholz, Harlan Subject: PCORI Pilot Grants “…it fundamentally changed the way we think about patient engagement in research, from being passively observed subjects to thinking creatively how to engage them in the design of our research - the way we design the study, how we craft our interventions and what outcomes we measure.” 42
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- 46. PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE The National Press Club – Washington, D.C. February 27, 2012 Patient-Centered Outcomes Research Institute National Patient and Stakeholder Dialogue Join the Conversation on Twitter: #PCORIdialogue
- 47. The National Patient and Stakeholder Dialogue Washington, D.C. February 27, 2012 Gail Hunt, Member, PCORI Board of Governors Introduction to the Public Comment Period Join the Conversation on Twitter: #PCORIdialogue
- 48. The National Press Club – Washington, D.C. February 27, 2012 Patient-Centered Outcomes Research Institute National Patient and Stakeholder Dialogue Join the Conversation on Twitter: #PCORIdialogue
- 49. The National Patient and Stakeholder Dialogue Washington, D.C. February 27, 2012 Larry Becker, Member, PCORI Board of Governors Harlan Weisman, MD, Member, PCORI Board of Governors Ellen Sigal, PhD, Member, PCORI Board of Governors Observations from PCORI Board Members Join the Conversation on Twitter: #PCORIdialogue
- 50. The National Press Club – Washington, D.C. February 27, 2012 Patient-Centered Outcomes Research Institute National Patient and Stakeholder Dialogue Join the Conversation on Twitter: #PCORIdialogue