Abstract
Introduction
Investigation of effective modes of community engagement remains an important topic in research yet is often overlooked. Studies focusing on how to move beyond a tokenistic involvement of community members into one with true collaboration remain spread across a broad range of disciplines.
Objective
This umbrella review aims to bring together existing systematic reviews to highlight best practice related to community engagement in research.
Method
The Health Research Literature Explorer (PCORI), PubMed, and Google Scholar were searched. Studies published in English since 1990 on any aspect of end-user engagement in research were considered. A total of 23 articles met the inclusion criteria and withstood quality appraisal using the Joanna Briggs Institute appraisal checklist.
Results
Our findings indicate no conclusive evidence on which type of community engagement is most effective. Rather, we found engagement activities varied depending on the type and stages of the study.
Conclusion
Hence, the need for innovative approaches to measure the impact of community engagement was stressed in the review. However, it was possible to narrow the gap between research and implementation by adhering to cultural context, community concern, and attitudes.
Recommendation
Thus, research in general should underpin robust community engagement activities to gain better outcomes.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Data availability
All data generated or analyzed during this study are included in this article.
References
Adhikari B, James N, Newby G, von Seidlein L, White NJ, Day NP, Dondorp AM, Pell C, Cheah PY (2016) Community engagement and population coverage in mass anti-malarial administrations: a systematic literature review. Malar J 15(1):523. https://doi.org/10.1186/s12936-016-1593-y
Allotey P, Tan DT (2019) Community Engagement in Support of Moving Toward Universal Health Coverage. 5 (1):66-77. https://doi.org/10.1080/23288604.2018.1541497
Andersson N (2017) Community-led trials: intervention co-design in a cluster randomised controlled trial. BMC Public Health 17(Suppl 1):397. https://doi.org/10.1186/s12889-017-4288-6
Aromataris E, Fernandez R, Godfrey C, Holly C, Khalil H, Tungpunkom P (2014) Methodology for JBI umbrella reviews. Joanna Briggs Institute Reviewers' Manual: 2014 edition / Supplement (pp. 1-34). The Joanna Briggs Institute, Australia
Baltzell K, Harvard K, Hanley M, Gosling R, Chen I (2019) What is community engagement and how can it drive malaria elimination? Case studies and stakeholder interviews. Malaria J 18(1):245–245. https://doi.org/10.1186/s12936-019-2878-8
Bodison SC, Sankaré I, Anaya H, Booker-Vaughns J, Miller A, Williams P, Norris K (2015) Engaging the community in the dissemination, implementation, and improvement of health-related research. Clin Transl Sci 8(6):814–819. https://doi.org/10.1111/cts.12342
Boulanger RF, Seidel S, Lessem E, Pyne-Mercier L, Williams SD, Mingote LR, Scott C, Chou AY, Lavery JV (2013) Engaging communities in tuberculosis research. Lancet Infect Dis 13(6):540–545. https://doi.org/10.1016/s1473-3099(13)70042-2
Bowen DJ, Hyams T, Goodman M, West KM, Harris-Wai J, Yu JH (2017) Systematic review of quantitative measures of stakeholder engagement. Clin Transl Sci 10(5):314–336. https://doi.org/10.1111/cts.12474
Brear M, Hammarberg K, Fisher J (2018) Community participation in research from resource-constrained countries: a scoping review. Health Prom Int 33(4):723–733. https://doi.org/10.1093/heapro/dax010
Carter MW, Tregear ML, Lachance CR (2015) Community engagement in family planning in the U.S.: a systematic review. Am J Prev Med 49(2 Suppl 1):S116–S123. https://doi.org/10.1016/j.amepre.2015.03.029
Christie N, Sleney J, Ahmed F, Knight E (2012) Engaging the Somali community in the road safety agenda: a process evaluation from the London borough of Hounslow. J Community Health 37(4):814–821. https://doi.org/10.1007/s10900-011-9515-y
Concannon TW, Fuster M, Saunders T, Patel K, Wong JB, Leslie LK, Lau J (2014) A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J Gen Intern Med 29(12):1692–1701. https://doi.org/10.1007/s11606-014-2878-x
Cyril S, Smith BJ, Possamai-Inesedy A, Renzaho AM (2015) Exploring the role of community engagement in improving the health of disadvantaged populations: a systematic review. Global Health Action 8:29842. https://doi.org/10.3402/gha.v8.29842
Day S, Blumberg M, Vu T, Zhao Y, Rennie S, Tucker JD (2018) Stakeholder engagement to inform HIV clinical trials: a systematic review of the evidence. J Int AIDS Soc 21((Suppl 7)):e25174. https://doi.org/10.1002/jia2.25174
Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P, Eton D, Sloan J, Montori V, Asi N, Dabrh AM, Murad MH (2014) Patient engagement in research: a systematic review. BMC Health Serv Res 14:89. https://doi.org/10.1186/1472-6963-14-89
Elgazzar R, Nolan TS, Joseph JJ, Aboagye-Mensah EB, Azap RA, Gray DM 2nd (2020) Community-engaged and community-based participatory research to promote American Heart Association Life's Simple 7 among African American adults: A systematic review. PLoS One 15(9):e0238374. https://doi.org/10.1371/journal.pone.0238374
Elsabbagh M, Yusuf A, Prasanna S, Shikako-Thomas K, Ruff CA, Fehlings MG (2014) Community engagement and knowledge translation: progress and challenge in autism research. Autism: Int J Res Pract 18(7):771–781. https://doi.org/10.1177/1362361314546561
Farnsworth SK, Böse K, Fajobi O, Souza PP, Peniston A, Davidson LL, Griffiths M, Hodgins S (2014) Community engagement to enhance child survival and early development in low- and middle-income countries: an evidence review. J Health Commun 19(sup1):67–88. https://doi.org/10.1080/10810730.2014.941519
Fergusson D, Monfaredi Z, Pussegoda K, Garritty C, Lyddiatt A, Shea B, Duffett L, Ghannad M, Montroy J, Murad MH, Pratt M, Rader T, Shorr R, Yazdi F (2018) The prevalence of patient engagement in published trials: a systematic review. Res Involvement Engagement 4:17. https://doi.org/10.1186/s40900-018-0099-x
Goodridge D, Henry C, Watson E, McDonald M, New L, Harrison EL, Scharf M, Penz E, Campbell S, Rotter T (2018) Structured approaches to promote patient and family engagement in treatment in acute care hospital settings: protocol for a systematic scoping review. System Rev 7(1):35. https://doi.org/10.1186/s13643-018-0694-9
Graham PW, Kim MM, Clinton-Sherrod AM, Yaros A, Richmond AN, Jackson M, Corbie-Smith G (2016) What is the role of culture, diversity, and community engagement in transdisciplinary translational science? Trans Behavior Med 6(1):115–124. https://doi.org/10.1007/s13142-015-0368-2
Harrison JD, Auerbach AD, Anderson W, Fagan M, Carnie M, Hanson C, Banta J, Symczak G, Robinson E, Schnipper J, Wong C, Weiss R (2019) Patient stakeholder engagement in research: a narrative review to describe foundational principles and best practice activities. Health Expect 22(3):307–316. https://doi.org/10.1111/hex.12873
Henderson P, Fisher NR, Ball J, Sellwood W (2020) Mental health practitioner experiences of engaging with service users in community mental health settings: a systematic review and thematic synthesis of qualitative evidence. J Psychiat Mental Health Nurs 27(6):807–820. https://doi.org/10.1111/jpm.12628
Israel BA, Krieger J, Vlahov D, Ciske S, Foley M, Fortin P, Guzman JR, Lichtenstein R, McGranaghan R, Palermo AG, Tang G (2006) Challenges and facilitating factors in sustaining community-based participatory research partnerships: lessons learned from the Detroit, New York City and Seattle Urban Research Centers. J Urban Health: Bull New York Acad Med 83(6):1022–1040. https://doi.org/10.1007/s11524-006-9110-1
Joosten YA, Israel TL, Head A, Vaughn Y, Villalta Gil V, Mouton C, Wilkins CH (2018) Enhancing translational researchers' ability to collaborate with community stakeholders: lessons from the Community Engagement Studio. J Clin Trans Sci 2(4):201–207. https://doi.org/10.1017/cts.2018.323
Jull JE, Davidson L, Dungan R, Nguyen T, Woodward KP, Graham ID (2019) A review and synthesis of frameworks for engagement in health research to identify concepts of knowledge user engagement. BMC Med Res Methodol 19(1):211. https://doi.org/10.1186/s12874-019-0838-1
Krishnaswami J, Martinson M, Wakimoto P, Anglemeyer A (2012) Community-engaged interventions on diet, activity, and weight outcomes in U.S. schools: a systematic review. Am J Prev Med 43(1):81–91. https://doi.org/10.1016/j.amepre.2012.02.031
Lin CY, Loyola-Sanchez A, Hurd K, Ferucci ED, Crane L, Healy B, Barnabe C (2019) Characterization of indigenous community engagement in arthritis studies conducted in Canada, United States of America, Australia and New Zealand. Sem Arthritis Rheumatism 49(1):145–155. https://doi.org/10.1016/j.semarthrit.2018.11.009
MacQueen KM, Bhan A, Frohlich J, Holzer J, Sugarman J (2015) Evaluating community engagement in global health research: the need for metrics. BMC Med Ethics 16:44. https://doi.org/10.1186/s12910-015-0033-9
Manafò E, Petermann L, Vandall-Walker V, Mason-Lai P (2018) Patient and public engagement in priority setting: a systematic rapid review of the literature. PLoS One 13(3):e0193579. https://doi.org/10.1371/journal.pone.0193579
Matamala-Gomez M, Maisto M, Montana JI, Mavrodiev PA, Baglio F, Rossetto F, Mantovani F, Riva G, Realdon O (2020) The role of engagement in teleneurorehabilitation: a systematic review. Front Neurol 11:354. https://doi.org/10.3389/fneur.2020.00354
Moore L, Chersich MF, Steen R, Reza-Paul S, Dhana A, Vuylsteke B, Lafort Y, Scorgie F (2014) Community empowerment and involvement of female sex workers in targeted sexual and reproductive health interventions in Africa: a systematic review. Glob Health 10:47. https://doi.org/10.1186/1744-8603-10-47
Morrel-Samuels S, Bacallao M, Brown S, Bower M, Zimmerman M (2016) Community engagement in youth violence prevention: crafting methods to context. J Primary Prevent 37:189–207. https://doi.org/10.1007/s10935-016-0428-5
Nwanyanwu KH, Grossetta Nardini HK, Shaughness G, Nunez-Smith M, Newman-Casey PA (2017) Systematic review of community-engaged research in ophthalmology. Expert Rev Ophthalmol 12(3):233–241. https://doi.org/10.1080/17469899.2017.1311787
O'Mara-Eves A, Brunton G, Oliver S, Kavanagh J, Jamal F, Thomas J (2015) The effectiveness of community engagement in public health interventions for disadvantaged groups: a meta-analysis. BMC Public Health 15:129. https://doi.org/10.1186/s12889-015-1352-y
PCORI (2018) Patient Centered Outcomes Research Institute (PCORI). Engagement in health research literature explorer: patient centered research outcomes research institute; 2018 Available from: https://www.pcori.org/literature/engagement-literature. Accessed 25 Nov 2022
Polidano K, Parton L, Agampodi SB, Agampodi TC, Haileselassie BH, Lalani JMG, Mota C, Price HP, Rodrigues S, Tafere GR, Trad LAB, Zerihun Z, Dikomitis L (2022) Community engagement in cutaneous leishmaniasis research in Brazil, Ethiopia, and Sri Lanka: a decolonial approach for global health. Front Public Health 10:823844. https://doi.org/10.3389/fpubh.2022.823844
Questa K, Das M, King R, Everitt M, Rassi C, Cartwright C, Ferdous T, Barua D, Putnis N, Snell AC, Huque R, Newell J, Elsey H (2020) Community engagement interventions for communicable disease control in low- and lower- middle-income countries: evidence from a review of systematic reviews. Int J Equity Health 19(1):51. https://doi.org/10.1186/s12939-020-01169-5
Ray KN, Miller E (2017) Strengthening stakeholder-engaged research and research on stakeholder engagement. J Comp Effect Res 6(4):375–389. https://doi.org/10.2217/cer-2016-0096
Soobiah C, Straus SE, Manley G, Marr S, Paus Jenssen E, Teare S, Hamid J, Tricco AC, Moore A (2019) Engaging knowledge users in a systematic review on the comparative effectiveness of geriatrician-led models of care is possible: a cross-sectional survey using the Patient Engagement Evaluation Tool. J Clin Epidemiol 113:58–63. https://doi.org/10.1016/j.jclinepi.2019.05.015
Szilagyi PG, Shone LP, Dozier AM, Newton GL, Green T, Bennett NM (2014) Evaluating community engagement in an academic medical center. Acad Med: J Assoc Am Med Colleges 89(4):585–595. https://doi.org/10.1097/acm.0000000000000190
Turin TC, Chowdhury N, Vaska M, Rumana N, Lasker MAA, Chowdhury MZI (2020) Knowledge mobilisation in bridging community-practice-academia-policy through meaningful engagement: systematic integrative review protocol focusing on studies conducted on health and wellness among immigrant communities. 10 (4):e036081. https://doi.org/10.1136/bmjopen-2019-036081
Zhao G, Kennedy C, Mabaya G, Okrainec K, Kiran T (2019) Patient engagement in the development of best practices for transitions from hospital to home: a scoping review. BMJ Open 9(8):e029693. https://doi.org/10.1136/bmjopen-2019-029693
Acknowledgements
We thank the ECLIPSE program for the opportunity to work as postdoctoral researchers, PhD students and researchers. For more information about this program, see http://www.clipse-community.com
Funding
The ECLIPSE program is funded by the National Institute for Health and Care Research (NIHR) (NIHR200135) using UK aid from the UK Government to support global health research. The views expressed in this article are those of the authors and not necessarily those of the NIHR or the UK Department of Health and Social Care.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Ethics approval and consent to participate
Not applicable.
Consent for publication
Not applicable.
Conflict of interests
The authors declare that they have no conflict of interests.
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Taffere, G., Temesgen, H., Haileselassie, B. et al. Linking research to end users through community engagement: an umbrella review. J Public Health (Berl.) (2023). https://doi.org/10.1007/s10389-023-02167-x
Received:
Accepted:
Published:
DOI: https://doi.org/10.1007/s10389-023-02167-x