Engaging Stakeholders, Improving Research: Experience From the Effective Health Care Program

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Slide 1

Engaging Stakeholders, Improving Research: Experience From the Effective Health Care Program

Lawrence B. Sadwin
Friends of the World Heart Federation
Foundation

Slide 2

Moderator: Lawrence Sadwin

• 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.

Image: A photograph of Lawrence Sadwin is shown.

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Goals and Objectives

• 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.

Slide 4

The Patient Experience

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."

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Experience in Research

• 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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Still Work To Do

• 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.

Slide 8

Image: A photograph shows a sign that reads in large letters, "Caution: This side has sharp edges. Do not touch the edge of this sign." Below, in small text, is "Also, the bridge is out ahead."

Slide 9

Images: Photographs of Lawrence Sadwin's grandchildren are shown.

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Speaker: Jeanne-Marie Guise, MD, MPH

• 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.

Image: A photograph of Jeanne-Marie Guise is shown.

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Speaker: Ebony Boulware, MD, MPH

• 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.

Image: A photograph of Ebony Boulware is shown.

Slide 12

Agenda