Co-creation and community engagement in implementation research with vulnerable populations: a co-creation process in China

Liyuan Zhang; Katherine T. Li; Tong Wang; Danyang Luo; Rayner K. J. Tan; Gifty Marley; Weiming Tang; Rohit Ramaswamy; Joseph D. Tucker; Dan Wu

doi:10.1071/SH23149

RESEARCH ARTICLE (Open Access)

Co-creation and community engagement in implementation research with vulnerable populations: a co-creation process in China

Liyuan Zhang ^A , Katherine T. Li ^B , Tong Wang ^A , Danyang Luo ^C , Rayner K. J. Tan ^D , Gifty Marley ^A , Weiming Tang

^A ^E , Rohit Ramaswamy ^F , Joseph D. Tucker

^E ^# and Dan Wu

^G ^# ^*

+ Author Affiliations

- Author Affiliations

^A University of North Carolina at Chapel Hill Project-China, Guangzhou, China.

^B Division of Infectious Diseases, School of Medicine, University of California Los Angeles, Los Angeles, CA, USA.

^C Zhitong Guangzhou LGBT Center, Guangzhou, China.

^D National University Singapore Saw Swee Hock School of Public Health, Singapore.

^E Department of Medicine, Division of Infectious Disease, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

^F Cincinnati Children’s Hospital Medical Center, Anderson Center for Health Systems Excellence, Cincinnati, OH, USA.

^G Department of Social Medicine and Health Education, School of Public Health, Nanjing Medical University, Nanjing, China.

^* Correspondence to: danwu@njmu.edu.cn

^# Co-senior authors

Handling Editor: Edmond Pui Hang Choi

Sexual Health 21, SH23149 https://doi.org/10.1071/SH23149

Submitted: 9 August 2023 Accepted: 14 November 2024 Published: 5 December 2024

Abstract

Background

Top-down implementation strategies led by researchers often generate limited or tokenistic community engagement. Co-creation, a community engagement methodology, aims to create a shared leadership role of program beneficiaries in the development and implementation of programs, and encourages early and deep involvement of community members. We describe our experience using a four-stage co-creation approach to adapt and implement a sexually transmitted diseases (STD) testing intervention among men who have sex with men (MSM) in China.

Methods

We adapted a four-stage approach to co-creation. First, we conducted a needs assessment based on our prior work and discussions with community members. Second, we planned for co-creation by establishing co-creator roles and recruiting co-creators using both stratified convenience and opportunistic sampling. Third, we conducted co-creation via hybrid online/in-person focus groups (four multistakeholder groups and four MSM-only groups). Finally, we evaluated validity of the co-creation process through qualitative observations by research staff, analyzed using rapid qualitative analysis, and evaluated co-creator experience through post-discussion survey Likert scales and open-ended feedback.

Results

Needs assessment identified the needs to adapt our STD intervention to be independently run at community-based and public clinics, and to develop explanations and principles of co-creation for our potential co-creators. In total, there were 17 co-creation members: one co-creation lead (researcher), two co-chairs (one gay influencer and one research assistant), eight MSM community members, four health workers (two health professionals and two lay health workers) and two research implementers and observers. Co-created contents for the trial included strategies to decrease stigma and tailor interventions to MSM at public STD clinics, strategies to integrate STD testing services into existing community-led clinics, and intervention components to enhance acceptability and community engagement. Our evaluation of validity identified three main themes: challenges with representation, inclusivity versus power dynamics and importance of leadership. Surveys and free responses suggested that the majority of co-creators had a positive experience and desired more ownership.

Conclusion

We successfully adapted a structured co-creation approach to adapt and implement an STD testing intervention for a vulnerable population. This approach may be useful for implementation, and further research is needed in other contexts and populations.

Keywords: co-creation, community engagement, empowerment, equity, implementation research, men who have sex with men, sexually transmissible diseases, vulnerable populations.

References

1 US Department of Health and Human Services. Principles of community engagement. 2nd edn. 2015. Available at https://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf [accessed 20 August 2018]

2 O’Mara-Eves A, Brunton G, Oliver S, Kavanagh J, Jamal F, Thomas J. The effectiveness of community engagement in public health interventions for disadvantaged groups: a meta-analysis. BMC Public Health 2015; 15: 129.
| Crossref | Google Scholar |

3 World Health Organization. Community engagement: a health promotion guide for universal health coverage in the hands of the people. World Health Organization; 2020.

4 Thomas JC, Sage M, Dillenberg J, Guillory VJ. A code of ethics for public health. Am J Public Health 2002; 92(7): 1057-9.
| Crossref | Google Scholar | PubMed |

5 Salsberg J, Parry D, Pluye P, Macridis S, Herbert CP, Macaulay AC. Successful strategies to engage research partners for translating evidence into action in community health: a critical review. J Environ Public Health 2015; 2015: 191856.
| Crossref | Google Scholar |

6 Zhao Y, Fitzpatrick T, Wan B, Day S, Mathews A, Tucker JD. Forming and implementing community advisory boards in low- and middle-income countries: a scoping review. BMC Med Ethics 2019; 20(1): 73.
| Crossref | Google Scholar | PubMed |

7 Slattery P, Saeri AK, Bragge P. Research co-design in health: a rapid overview of reviews. Health Res Policy Syst 2020; 18(1): 17.
| Crossref | Google Scholar |

8 Ní Shé É, Harrison R. Mitigating unintended consequences of co-design in health care. Health Expect 2021; 24(5): 1551-6.
| Crossref | Google Scholar | PubMed |

9 Vargas C, Whelan J, Brimblecombe J, Allender S. Co-creation, co-design, co-production for public health – a perspective on definitions and distinctions. Public Health Res Pract 2022; 32(2): e3222211.
| Crossref | Google Scholar |

10 Sanders EB-N, Stappers PJ. Co-creation and the new landscapes of design. CoDesign 2008; 4(1): 5-18.
| Crossref | Google Scholar |

11 Robert G, Donetto S, Williams O. Co-designing healthcare services with patients. In: Loeffler E, Bovaird T, editors. The Palgrave handbook of co-production of public services and outcomes. Springer; 2021. pp. 313–33.

12 Li C, Zhao P, Tan RKJ, Wu D. Community engagement tools in HIV/STI prevention research. Curr Opin Infect Dis 2024; 37(1): 53-62.
| Crossref | Google Scholar | PubMed |

13 Louise L, Annette B. Drawing straight lines along blurred boundaries: qualitative research, patient and public involvement in medical research, co-production and co-design. Evid Policy 2019; 15(3): 409-21.
| Crossref | Google Scholar |

14 Dietrich T, Trischler J, Schuster L, Rundle-Thiele S. Co-designing services with vulnerable consumers. J Serv Theory Pract 2017; 27(3): 663-88.
| Crossref | Google Scholar |

15 Li KT, Tang W, Wu D, et al. Pay-it-forward strategy to enhance uptake of dual gonorrhea and chlamydia testing among men who have sex with men in China: a pragmatic, quasi-experimental study. Lancet Infect Dis 2019; 19(1): 76-82.
| Crossref | Google Scholar | PubMed |

16 Yang F, Zhang TP, Tang W, et al. Pay-it-forward gonorrhoea and chlamydia testing among men who have sex with men in China: a randomised controlled trial. Lancet Infect Dis 2020; 20(8): 976-82.
| Crossref | Google Scholar | PubMed |

17 Leask CF, Sandlund M, Skelton DA, et al. Framework, principles and recommendations for utilising participatory methodologies in the co-creation and evaluation of public health interventions. Res Involv Engagem 2019; 5(1): 2.
| Crossref | Google Scholar |

18 Trischler J, Dietrich T, Rundle-Thiele S. Co-design: from expert- to user-driven ideas in public service design. Public Manag Rev 2019; 21(11): 1595-619.
| Crossref | Google Scholar |

19 Galabo R, Cruickshank L. Making it better together: a framework for improving creative engagement tools. CoDesign 2022; 18(4): 503-25.
| Crossref | Google Scholar |

20 Marley G, Tan RKJ, Wu D, et al. Pay-it-forward gonorrhea and chlamydia testing among men who have sex with men and male STD patients in China: the PIONEER pragmatic, cluster randomized controlled trial protocol. BMC Public Health 2023; 23(1): 1182.
| Crossref | Google Scholar | PubMed |

21 Darroch F, Giles A. Decolonizing health research: community-based participatory research and postcolonial feminist theory. Can J Action Res 2014; 15(3): 22-36.
| Crossref | Google Scholar |

22 Wallerstein N, Muhammad M, Sanchez-Youngman S, et al. Power dynamics in community-based participatory research: a multiple-case study analysis of partnering contexts, histories, and practices. Health Educ Behav 2019; 46(1_suppl): 19S-32S.
| Crossref | Google Scholar | PubMed |

23 Morgan MA, Lifshay J. Community engagement in public health. California Endowment Under the Sponsorship of Contra Costa Health Services (CCHS); 2006. pp. 1–8.

24 Wallerstein N, Duran B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health 2010; 100(S1): S40-S6.
| Crossref | Google Scholar |

25 Mulvale G, Robert G. Special issue- engaging vulnerable populations in the co-production of public services. Int J Public Adm 2021; 44(9): 711-14.
| Crossref | Google Scholar |

26 Lesser J, Oscós-Sánchez MA. Community-academic research partnerships with vulnerable populations. Annu Rev Nurs Res 2007; 25(1): 317-37.
| Crossref | Google Scholar |

27 Bernays S, Lanyon C, Tumwesige E, et al. ‘This is what is going to help me’: developing a co-designed and theoretically informed harm reduction intervention for mobile youth in South Africa and Uganda. Glob Public Health 2023; 18(1): 1953105.
| Crossref | Google Scholar | PubMed |

28 Tan RKJ, Wu D, Day S, et al. Digital approaches to enhancing community engagement in clinical trials. npj Digit Med 2022; 5(1): 37.
| Crossref | Google Scholar | PubMed |

29 Cole SW, Kemeny ME, Taylor SE, Visscher BR, Fahey JL. Accelerated course of human immunodeficiency virus infection in gay men who conceal their homosexual identity. Psychosom Med 1996; 58(3): 219-31.
| Crossref | Google Scholar | PubMed |

30 Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Serv Res 2014; 14: 89.
| Crossref | Google Scholar |