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More Effectively Engaging Consumers in Comparative Effectiveness Research 5.10.10

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Leonard Davis Institute of Health Economics
Leonard Davis Institute of Health Economics

Author: Seema Sonnad

Health & Medicine
1 of 1
More effectively engaging consumers in comparative effectiveness research. Seidenfeld JD 1 , Sonnad SS 1,2 , Gruman J 3 1 Center for Medical Technology Policy, Baltimore, MD, USA, 2 Department of Surgery, University of Pennsylvania School of Medicine, Philadelphia, PA, USA, 3 Center for Advancing Health, Washington, DC, USA, Research Objectives Current efforts by payers, clinical researchers, and policymakers to prioritize, design and implement comparative effectiveness research (CER) often miss the opportunity to incorporate the patient and consumer perspective. The Center for Medical Technology Policy (CMTP) seeks to generate reliable evidence for decision-makers and recognizes the importance of including patients and consumers as fellow decision-makers, rather than as only an audience for such decisions. This poster reports on the formation of and recommendations from a Patient and Consumer Advisory Committee (PCAC) designed to assist CMTP’s efforts to prioritize CER topics and create guidelines for research design. Results The Patient and Consumer Advisory Committee (PCAC) developed sets of recommendations for CMTP’s efforts to engage patients in both priority-setting and developing guidelines for the design of new CER studies.   ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Conclusions It has become axiomatic among policy makers and research organizations engaged in comparative effectiveness research to think that public representatives should be involved in setting CER priorities and designing CER studies. Our experience demonstrates that doing so effectively is neither straightforward nor easy. There is a risk that the public’s voice will be lost in the CER enterprise unless action is taken to develop best practices for meaningful patient and consumer involvement. This project presents a set of recommendations for public engagement in various aspects of comparative effectiveness research (both priority-setting and the design of CER studies) for policy makers and researchers who recognize the imperative to include patient / consumer perspectives but are uncertain about how to do so effectively. CMTP has used these with great success in projects initiated since the July 2009 meeting. We conclude that as other research organizations or entities seek to better engage patients and consumers in their work, they adapt these recommendation for their use. Potential future work : CMTP’s PCAC recommended that a ranked list of priority-setting criteria developed by a collaboration of authoritative patient advocacy voices would be valuable to policy makers and researchers. Such an effort would ensure that the public’s voice is genuinely represented in this new era of patient centered outcomes research. ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Jessie Gruman (Chair) Founder, Center for Advancing Health Jennifer Sweeney Director of  Americans for Quality Health Care , National Partnership for Women and Families Maureen P. Corry Executive Director,  Childbirth Connection Eugene J. Kazmierczak Patient Consultant, Food and Drug Administration Patience  H. White Chief Public Health Officer, Arthritis Foundation Lawrence Sadwin President, Friends of the World Heart Federation Foundation

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