MORE EFFECTIVELY ENGAGING CONSUMERS IN COMPARATIVE EFFECTIVENESS RESEARCH
Author(s)
Seidenfeld JD1, Sonnad S1, Gruman J21Center for Medical Technology Policy, Baltimore, MD, USA, 2Center for Advancing Health, Washington, DC, USA
Presentation Documents
OBJECTIVES: Current efforts to influence health care using comparative effectiveness research (CER) often miss the opportunity to incorporate patient and consumer perspectives. The Center for Medical Technology Policy (CMTP) seeks to generate evidence for decision-makers and recognizes the importance of including patients and consumers as fellow decision-makers. This paper reports on the formation of and recommendations from a Patient and Consumer Advisory Committee (PCAC) for CMTP. METHODS: Following a literature review on consumer advocacy in health and interviews with experts regarding appropriate structure and training for effective patient and consumer engagement in CER, CMTP convened a workgroup of consumer and patient advocates to review practices and create a set of recommendations for strengthening the patient and consumer voice in CMTP’s prioritization of technologies and development of guidelines for CER study designs. RESULTS: The workgroup’s key recommendations for technology prioritization include 1) how and when to solicit input on technology topics from patient/consumer groups; 2) the role of patients/consumers in setting priorities that reflect public values; 3) the information requirements of patients / consumers to serve as effective public representatives; and 4) the characteristics of patients/consumers that would contribute a broad perspective. For the development of study design guidelines, 1) gather patient/consumer information preferences via semi-structured interviews; 2) address patient/consumer identified outcomes; 3) consider having advocates who are also subject-matter experts review and comment on summaries from stakeholder meetings in addition to the public representatives who directly participate; and 4) consult with patient/consumer advocates about the suitability of disseminating project findings. CONCLUSIONS: As CER has expanded, a clear need has emerged for guidance on engaging public representatives in this area. There is a risk that the public’s voice will be lost in the CER enterprise unless action is taken to champion and bring it to the forefront of the discussion.
Conference/Value in Health Info
2010-05, ISPOR 2010, Atlanta, GA, USA
Value in Health, Vol. 13, No. 3 (May 2010)
Code
PHP1
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives
Disease
Multiple Diseases