Key to reaching target communities
The goal of much health research, and the researchers behind it, is to improve the health of the populations affected by the target disease. Yet, many research studies fail to reach the communities who would benefit most from their intervention. Although there are many reasons for this (including site inequity, which our Vice President of Global Strategy, Ghiorghis Belai, discussed in a recent article), research has shown that, despite a willingness of community members to participate and the use of study materials that are translated into local languages, not doing the following negatively impacts engagement and, therefore, recruitment3:
Respect for others at center stage
Strategies for success
Community advisory boards contribute to a trial’s success
Contextualizing the informed consent process and protocol
Schizophrenia genomics study in South Africa: Recommended field workers use simple language + visuals, schizophrenia explanation, separate consent for HIV testing9
Sensitizing and managing rumors in the community
Malaria IPTp study testing for placental malaria in Malawi:
Responded to “researchers are selling women’s placentas”10
Assisting with participant recruitment, tracking and retention
Malaria IPTp + insecticide-treated bed nets in Tanzania:
Recommended community health workers directly supervise drug administration and bed net use11
Commonly used cultural adaptations include recognizing family involvement and the role of extended family, as well as the use of culturally relevant metaphors or interactive, visual intervention resources.7 Staffing a study with local researchers and frontline staff who reflect the participant population or the community’s diversity can aid with acceptance of the research by participants.12 At FHI Clinical, we’ve found having staff on the ground where we’re conducting research has been particularly helpful in engaging communities.
Help to those who need it most
- Improving Cultural Competence to Reduce Health Disparities for Priority Populations. Agency for Healthcare Research and Quality. July 8, 2014. Available from https://effectivehealthcare.ahrq.gov/products/cultural-competence/research-protocol.
- Lawless ME, Muellner J, Sehgal AR, Thomas CL, Perzynski AT. Cultural Competency Education for Researchers: A Pilot Study Using a Neighborhood Visit Approach. SOCRA Source. 2014;81:12-21.
- O’Brien RL, Kosoko-Lasaki O, Cook CT, et al. Self-Assessment of Cultural Attitudes and Competence of Clinical Investigators to Enhance Recruitment and Participation of Minority Populations in Research. J Natl Med Assoc 2006;98(5):674-682.
- Jeffreys MR. Teaching cultural competence in nursing and health care: Inquiry, action, and innovation (3rd ed). 2016. Springer. https://doi.org/10.1891/9780826119971
- Hook JN, Davis DE, Owen J, et al. Cultural humility: Measuring openness to culturally diverse clients. Journal of Counseling Psychology 2013;60(3):353-366 doi:10.1037/a0032595
- Davies J, Bukulatjpi S, Sharma S, et al. Development of a culturally appropriate bilingual electronic app about hepatitis B for indigenous Australians: towards shared understandings. JMIR Res Protoc 2015;4(2):e70. doi:10.2196/resprot.4216
- Jongen CS, McCalman J, Bainbridge RG. The implementation and evaluation of health promotion services and programs to improve cultural competency: a systematic scoping review. Frontiers in Public Health 2017;5.
- Brach C, Fraserirector I. Can cultural competency reduce racial and ethnic health disparities? A review and conceptual model. Med Care Res Rev 2000;57(Suppl 1(4)):181–217. doi:10.1177/107755800773743655/
- Campbell MM, Susser E, de Vries J, et al. Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study. BMC Med Ethics 2015;16:45. https://doi.org/10.1186/s12910-015-0037-5
- Manda-Taylor L. Establishing community advisory boards for clinical trial research in Malawi: Engendering ethical conduct in research. Malawi Medical Journal 2014;25(4). https://www.ajol.info/index.php/mmj/article/view/102066
- Mtove G, Kimani J, Kisinza W, et al. Multiple-level stakeholder engagement in malaria clinical trials: addressing the challenges of conducting clinical research in resource-limited settings. Trials 19, 190 (2018). https://doi.org/10.1186/s13063-018-2563-1
- Hussen SA, Kuppalli K, Castillo-Mancilla J, et al. Cultural Competence and Humility in Infectious Diseases Clinical Practice and Research. The Journal of Infectious Diseases 2020;222(Supplement_6):S535-S542,