Lawrence B. Sadwin Friends of the World Heart Federation Foundation Moving Ahead: Leveraging Knowledge & Action to Improve Healthcare Quality. AHRQ 2012 Annual Conference.

 President-Friends of the World Heart Federation Foundation, Geneva, Switzerland  Chairman of the Board- Center for Medical Technology Policy  Past National Chairman-American Heart Association  Past Chairman-Landmark Medical Center  Former member-Council of Public Representatives-NIH 2

 Describe approaches used by the Evidence-based Practice Centers (EPC) and Developing Evidence to Inform Decisions about Effectiveness (DEcIDE) Network to engage diverse stakeholders in their research.  Assess the impact of stakeholder participation on the quality and relevance of products and outputs.  Identify challenges and future directions for improving the quality of engagement, focus on challenges related to including important and often underrepresented constituencies, and address obstacles to obtaining meaningful stakeholder input. 3

 A Comparative Exercise of Two Men:  Both are 38 years old  Both are Presidents of their companies  Both have young children  Both have fathers who died of heart disease  Both are dealing with their own heart disease 4

“When I think about the role of the patient in the Research process, I am reminded of the ham and egg breakfast… …all the chicken has to do is to get involved; it’s the pig that must make the commitment”

 NIH-COPR Workshop –Inviting Public Participation in clinical research: Building Trust through Partnerships-2004  AHA-advisory working group-Recommendations to Develop Strategies to increase the number of ST segment elevation in MI patients with timely access to primary percutaneous coronary intervention. Circulation 2006  AHA AMI writing group-Development of Systems of care for St-elevated MI patients-non-percutaneous coronary intervention-hospital perspective. Circulation 2007  AMA/AHA/ACC-PCPI CAD/HTN work group,2010  DEcIDE Cardiovascular Consortium Stakeholders Meeting,2010  Center for Medical Technology Policy Patient and Consumer Advisory Council  Agency for Healthcare Research and Quality Community Forum: Technical Expert Panel on Patient and Consumer Involvement in Patient-Centered Outcomes Research,2011 6

 Patient collaboration throughout the research process is relatively new to CER  Need for research on the impact of patient representatives  Need to overcome barriers for participation  Need to establish best practices for CER 7

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 Professor, Oregon Health & Science University  Evidence-based Practice Centers (EPCs) conduct research reviews for the Effective Health Care (EHC) Program.  Discuss strategies used by the EPC program to engage stakeholders to improve relevance and applicability of its products. 10

 Associate Professor of Medicine & Associate Director, Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins School of Medicine.  DEcIDE Network that conducts studies on the outcomes, effectiveness, safety and usefulness of medical treatments and services.  Identify potential challenges to stakeholder engagement in protocol development in the DEcIDE program. 11

12 Introduction (Presenter: Lawrence Sadwin, Friends of the World Heart Federation Foundation) 8:00-8:10 AM Stakeholder Engagement in the Evidence-based Center (EPC) Practice Program (Presenter: Jeanne-Marie Guise, Oregon Health & Science University) 8:10-8:30AM (Last 5 minutes reserved for Q&A) Engaging Stakeholders, Improving Research: Stakeholder Engagement in the DEcIDE Program (Presenter: Ebony Boulware, Johns Hopkins School of Medicine) 8:30-8:50 AM (Last 5 minutes reserved for Q&A) General Q&A Moderator: Lawrence Sadwin 8:50 AM- 9:30 AM