Lawrence B. SadwinFriends 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

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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.

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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

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“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

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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 CER7

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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.

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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.

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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