A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research
- 2.4k Downloads
We conducted a review of the peer-reviewed literature since 2003 to catalogue reported methods of stakeholder engagement in comparative effectiveness research and patient-centered outcomes research.
METHODS AND RESULTS
We worked with stakeholders before, during and after the review was conducted to: define the primary and key research questions; conduct the literature search; screen titles, abstracts and articles; abstract data from the articles; and analyze the data. The literature search yielded 2,062 abstracts. The review was conducted on 70 articles that reported on stakeholder engagement in individual research projects or programs.
Reports of stakeholder engagement are highly variable in content and quality. We found frequent engagement with patients, modestly frequent engagement with clinicians, and infrequent engagement with stakeholders in other key decision-making groups across the healthcare system. Stakeholder engagement was more common in earlier (prioritization) than in later (implementation and dissemination) stages of research. The roles and activities of stakeholders were highly variable across research and program reports.
To improve on the quality and content of reporting, we developed a 7-Item Stakeholder Engagement Reporting Questionnaire. We recommend three directions for future research: 1) descriptive research on stakeholder-engagement in research; 2) evaluative research on the impact of stakeholder engagement on the relevance, transparency and adoption of research; and 3) development and validation of tools that can be used to support stakeholder engagement in future work.
KEY WORDSstakeholders research review
Ushahsi Basu, Ridita Nizam, and Madeleine Streit screened abstracts, retrieved and reviewed full text articles, and recorded data on the articles that were included in the review. Samuel Hirshman and Shawna Beck-Sullivan assisted in preparation of the manuscript.
The authors also wish to thank Grant P. Thompson and Gerald Rasmussen of the Consumer Reports Panel, Judith Bradford of Fenway Institute & Fenway Health, Lawrence Becker of Xerox, JoAnne Grunbaum of the Centers for Disease Control & Prevention, Eleanor Perfetto of Pfizer Inc., Julie Lynch of the University of Massachusetts-Boston, and Radley (Chris) Sheldrick of Tufts Medical Center, who participated as stakeholders on this research project. Further information on these individuals and their roles on the project is presented in the Methods section and in Table 1.
The authors were support by grants from the Agency for Healthcare Research and Quality (AHRQ) (K01 HS017726 and HHSA 290 2007 10055 I) and the National Center for Advancing Translational Science (NCATS), NIH (UL1 RR025752).
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Agency for Healthcare Research and Quality or the National Institutes of Health.
The data presented in this article have not been presented at any conference or in any other peer reviewed publication.
Conflict of Interest
The authors have no competing interests that bear on the content of this manuscript.
Dr. Concannon took primary responsibility for conceiving and writing the manuscript, obtaining contributions from co-authors and managing stakeholder reviews and government clearances. All co-authors made intellectual contributions during the research design and analysis stages.
- 1.Institute of Medicine. Initial Priorities for Comparative Effectiveness Research. Washington: National Academies Press; 2009.Google Scholar
- 2.Federal Coordinating Council for Comparative Effectiveness Research. Report to the President and Congress. Washington: US Department of Health and Human Services; 2009.Google Scholar
- 4.Patient Centered Outcomes Research Institute. http://www.pcori.org. Accessed March 21, 2014.
- 5.McClellan M, Benner J, Garber AM, Meltzer DO, Tunis SR, Pearson S. Comparative Effectiveness Research: Will it bend the Health Care Cost Curve and Improve Quality? The Brookings Institute: Washington; 2009.Google Scholar
- 12.Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA). http://www.prisma-statement.org. Accessed March 21, 2014.
- 13.Amico KL, Wieland ML, Weis JA, Sullivan SM, Nigon JA, Sia IG. Capacity building through focus group training in community-based participatory research. Educ Health (Abingdon). 2011;24:638.Google Scholar
- 14.Ammerman A, Corbie-Smith G, St George DM, Washington C, Weathers B, Jackson-Christian B. Research expectations among African American church leaders in the PRAISE! project: a randomized trial guided by community-based participatory research. Am J Publ Health. 2003;93:1720–1727.CrossRefGoogle Scholar
- 37.James S, Arniella G, Bickell NA, et al. Community ACTION boards: an innovative model for effective community-academic research partnerships. Prog Commun Health Part. 2011;5:399–404.Google Scholar
- 40.Kataoka SH, Fuentes S, O’Donoghue VP, et al. A community participatory research partnership: the development of a faith-based intervention for children exposed to violence. Ethnic Dis. 2006;16:S89–97.Google Scholar
- 53.Noe TD, Manson SM, Croy C, McGough H, Henderson JA, Buchwald DS. The influence of community-based participatory research principles on the likelihood of participation in health research in American Indian communities. Ethnic Dis. 2007;17:S6–14.Google Scholar
- 59.Redwood D, Lanier A, Kemberling M, Klejka J, Sylvester I, Lundgren K. Community-based participatory research in a large cohort study of chronic diseases among Alaska native adults. Prog Commun Health Part. 2010;4:325–330.Google Scholar
- 62.Rhodes SD, Hergenrather KC, Vissman AT, et al. Boys must be men, and men must have sex with women: a qualitative CBPR study to explore sexual risk among African American, Latino, and White gay men and MSM. Am J Men’s Health. Mar 2011;5:140–151.Google Scholar
- 63.Sanchez RJ, Mardekian J, Cziraky MJ, Mullins CD. Developing a collaborative study protocol for combining payer-specific data and clinical trials for CER. J Man Care Pharm. 2011;17:S34–37.Google Scholar
- 69.Steinman KJ, Wright V, Cooksey E, Myers LJ, Price-Spratlen T, Ryles R. Collaborative research in a faith-based setting: Columbus congregations for healthy youth. Publ Health Rep. 2005;120:213–216.Google Scholar
- 73.Stockdale SE, Mendel P, Jones L, Arroyo W, Gilmore J. Assessing organizational readiness and change in community intervention research: framework for participatory evaluation. Ethnic Dis. 2006;16:S136–145.Google Scholar
- 75.Tanjasiri S, Tran J, Palmer P, et al. Developing a community-based collaboration to reduce cancer health disparities among Pacific Islanders in California. Pac Health Dialogues. 2007;14:119.Google Scholar
- 78.Weiner J, Aguirre A, Ravenell K, et al. Designing an illustrated patient satisfaction instrument for low-literacy populations. Am J Man Care. 2004;10:853–860.Google Scholar
- 79.Wennerstrom A, Vannoy SD 3rd, Allen CE. Community-based participatory development of a community health worker mental health outreach role to extend collaborative care in post-Katrina New Orleans. Ethnic Dis. 2011;21(S1):45–51.Google Scholar
- 83.NIH. Health Care Systems (HCS) Research Collaboratory. http://grants.nih.gov/grants/guide/rfa-files/RFA-RM-12-002.html. Accessed March 21, 2013.
- 84.Lieu TA, Au D, Krishnan JA, Moss M, Selker H, Harabin A, Taggart V, Connors A. Comparative effectiveness research in lung diseases and sleep disorders: recommendations from the National Heart, Lung, and Blood Institute workshop. Am J Resp Crit Care Med. 2011;184:848–856.PubMedCentralPubMedCrossRefGoogle Scholar
- 85.Agency for Healthcare Research & Quality. Comparative Effectiveness Research Portfolio. http://www.ahrq.gov/cpi/portfolios/comparative-effectiveness/index.html. Accessed March 21, 2014.
- 87.Community-Based Participatory Research [Web page] http://obssr.od.nih.gov/scientific_areas/methodology/community_based_participatory_research/index.aspx. Accessed March 21, 2014.
- 89.Patient Centered Outcomes Research Institute. Funding Center. http://www.pcori.org/funding-opportunities/funding-announcements/funding-center/, Accessed March 21, 2014.
- 90.Patient Centered Outcomes Research Institute. Research We Support. http://www.pcori.org/research-we-support/. Accessed March 21, 2014.