Community Engagement in Research

Faculty involved: Mary Politi, Bettina Drake, Esther Lu, Aimee James, Jean Hunleth, Erika Waters, PhD, MPH, Vetta Sanders Thompson, Graham Colditz

The Division of Public Health Sciences strives to engage all members of the community throughout the research process. Often, one of the largest barriers to participation in research is the informed consent process. Individuals may not completely understand what they are consenting to or the scope of what their consent covers. Researchers at the division are working to better understand this issue by studying what models of consent participants prefer, what the facilitators and barriers to study participation are, and tools that can be used to assist in understanding informed consent. On a more narrow level, researchers are looking into this issue as it relates specifically to racial and ethnic health disparities. They want to know why racial minorities may be less likely to participate in research and what they would prefer, as compared to their white counterparts, to be the consent process. The Division knows and understands the importance of engaging minority communities in order to better serve them. See below for more research that is being conducted on this subject.


Brown KM, Drake BF, Gehlert S, Wolf LE, DuBois J, Seo J, Woodward K, Perkins H, Goodman MS, and Kaphingst KA. Differences in preferences for models of consent for biobanks between Black and White women. Journal of community genetics. 2016;7(1): 41-49.

Drake BF, Brown KM, Gehlert S, Wolf LE, DuBois J, Seo J, Woodward K, Perkins H, Goodman M, & Kaphingst K. Development of plain language supplemental materials for the biobank informed consent process. Journal of Cancer Education. 2016; 1-9.

Drake BF, Brown K, McGowan LD, Haslag-Minoff J, & Kaphingst K. Secondary consent to biospecimen use in a prostate cancer biorepository. BMC Research Notes. 2016; 9:346.

Politi MC, Kuzemchak MD, Kaphingst KA. Decision Aids Can Support Cancer Clinical Trials Decisions: Results of a Randomized Trial. Oncologist. 2016 Dec;21(12):1461-1470. Epub 2016 Aug 10.

Stewart K, Brown K, Drake B, Gehlert S, Wolf LA, Dubois J, Perkins H, Lyons S, Goodman M, & Kaphingst KA. An examination of intention to donate biospecimen among women considering consent models and health care discrimination. Cancer Epidemiology, Biomarkers, and Prevention. 2016 Apr; 25, C12-C12/doi:10.1158/1538-7755. DISP15-C12.

Drake B, Carter K, Boyd D, Gehlert S, & Thompson V. Barriers and strategies to participation in tissue research among African-American men. Journal of Cancer Education. [Published ahead of print on September 5, 2015] PMID: 26341221.

Gillies K, Cotton SC, Brehaut JC, Politi MC, Skea Z. Decision aids for people considering taking part in clinical trials. Cochrane Database Syst Rev. 2015 Nov 27;(11):CD009736. doi: 10.1002/14651858.CD009736.pub2.

Gehlert S, Fayanju OM, Jackson S, Kenkel S, McCullough I, Oliver C, & Sanford M. A method for achieving reciprocity of funding in community-based participatory research. Progress in Community Health Partnerships: Research, Education, and Action. (2014) 8(4), 561-570.

Anwuri, VV, Hall, LE, Mathews, K, et al. An institutional strategy to increase minority recruitment to therapeutic trials. Cancer Causes & Control 2013;24(10): 1797-1809. DOI 10.1007/s10552-013-0258-1