Consumer involvement in systematic reviews of comparative effectiveness research

Area of Science:

• Health Services Research
• Evidence-Based Practice
• Patient Engagement

Background:

• Comparative Effectiveness Research (CER) increasingly requires consumer input, as recommended by the Institute of Medicine.
• Systematic reviews are a cornerstone of CER, yet consumer involvement in this process is not well understood.

Purpose of the Study:

• To investigate current practices for engaging consumers in organizations that conduct or commission systematic reviews in the US and internationally.
• To identify the methods and extent of consumer participation in systematic review processes.

Main Methods:

• Conducted in-depth, semi-structured interviews with key informants.
• Reviewed websites of selected organizations.
• Included 17 prominent US-based and international organizations, such as the Cochrane Collaboration and Campbell Collaboration.

Main Results:

• Seven out of 17 organizations reported involving consumers, either programmatically or within specific reviews.
• Consumer involvement included topic suggestion, input on review questions, commenting on drafts, and serving on advisory groups or as co-authors.
• Consumers involved were diverse (patients, advocates, caregivers), recruited via patient organizations and networks. Training for consumers and researchers was provided by some organizations.

Conclusions:

• Consumers participate in systematic reviews through diverse roles and for varied purposes.
• There is a need to evaluate the effectiveness of different consumer involvement strategies to guide future recommendations for CER.