Consumer involvement in systematic reviews of comparative effectiveness research
Open accessAbstract
BACKGROUND: The Institute of Medicine recently recommended that comparative effectiveness research (CER) should involve input from consumers. While systematic reviews are a major component of CER, little is known about consumer involvement. OBJECTIVE: To explore current approaches to involving consumers in US-based and key international organizations and groups conducting or commissioning systematic reviews ('organizations'). DESIGN: In-depth, semi-structured interviews with key informants and review of organizations' websites. SETTING AND PARTICIPANTS: Seventeen highly regarded US-based and international (Cochrane Collaboration, Campbell Collaboration) organizations. RESULTS: Organizations that usually involve consumers (seven of 17 in our sample) involve them at a programmatic level in the organization or in individual reviews through one-time consultation or on-going collaboration. For example, consumers may suggest topics, provide input on the key questions of the review, provide comments on draft protocols and reports, serve as co-authors or on an advisory group. Organizations involve different types of consumers (individual patients, consumer advocates, families and caregivers), recruiting them mainly through patient organizations and consumer networks. Some offer training in research methods, and one developed training for researchers on how to involve consumers. Little formal evaluation of the effects of consumer involvement is being carried out. CONCLUSIONS: Consumers are currently involved in systematic reviews in a variety of ways and for various reasons. Assessing which approaches are most effective in achieving different aims of consumer involvement is now required to inform future recommendations on consumer involvement in CER.
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The evidence on PPI impact tends to be descriptive, largely qualitative, often retrospective case studies, with only a few exceptional prospective longitudinal case studies, comparative multiproject evaluations or studies employing quantitative designs.
“What evidence there is tends to be descriptive, largely qualitative, often retrospective case studies, 19,29,106 with only a few exceptional prospective longitudinal case studies, 15 comparative multiproject evaluations 107 or studies employing quantitative designs.108”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [107]
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Schröer-Günther, M., Zschorlich, B., Siegert, S., & Koch, K. (2026) · Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz · doi:10.1007/s00103-026-04188-9
- Authors
- Kreis, J., Puhan, M. A., Schünemann, H. J., & Dickersin, K.
- Affiliations
- Johns Hopkins University (US)
- McMaster University (CA)
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2012-03-06
- Volume
- 16
- Issue
- 4
- Pages
- 323-337
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC5060681
- OpenAlex
- W1562916421
- Cited by
- 88
- References
- 18
- Citations by year
- 2026: 3 · 2025: 4 · 2024: 19 · 2023: 3 · 2022: 2 · 2021: 10 · 2020: 7 · 2019: 6 · 2018: 5 · 2017: 6 · 2016: 4 · 2015: 7 · 2014: 4 · 2013: 7 · 2012: 1
- FWCI
- 0.90
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health Expectations (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Zurich Open Repository and Archive (University of Zurich) (submittedVersion)
- Funders
- Institute of Medicine, Washington, D.C.,United States
- Commonwealth Fund,New York, NY, United States
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Decision Sciences › Statistics, Probability and Uncertainty › Meta-analysis and systematic reviews
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Keywords
- consumer involvement, systematic reviews, comparative effectiveness research, patient and public involvement, research organization, Cochrane Collaboration, Campbell Collaboration, patient associations, consumer advocates, research training
- MeSH terms
- Community Participation, Humans, Interviews as Topic, Review Literature as Topic, United States, Conflict of Interest, Comparative Effectiveness Research
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