The current problem of inadequate diversity in research participation among racial/ethnic minorities has led to health disparities. This underrepresentation arises from factors such as lack of awareness of clinical trials by patients and physicians, inadequate health insurance, and limited opportunities. The need for improvement has led the National Cancer Institute’s Center to Reduce Cancer Health Disparities (CRCHD) to fund programs to close this gap.
The Cancer Disparities Research Network (CDRN) was created in 2001 to bring together transdisciplinary teams of community-engaged researchers, basic scientists, biospecimen experts, community health educators, community members, and community organizations. The Comprehensive Needs Assessment Tool was used to examine current practices, resources, and needs of each participating institution and assess minority biospecimen collections and biobanking practices.
CDRN institutions eligible to complete the Cancer Biospecimen Research Survey included those that collect and bank specimens. CDRN staff conducted biobanking stakeholder interviews by phone with the same facilities that completed the survey. The interviews lasted an average of 45 minutes, and the audio recordings were transcribed. With the use of descriptive statistics, the collected data from the Cancer Biospecimen Research survey was analyzed.
The CDRN found that biospecimen facilities had a willingness and capacity for collaboration on research projects, screening initiatives, and clinical trials. While these facilities reported willful engagement in these areas, there was a lack of biospecimen collection promotion efforts among collaborative education programs and outreach programs. Only a small percentage of these programs reported promoting the collection of biospecimens in minority underserved populations.
The CRDN discovered a lack of funding, resources, and clinical trial infrastructure for the community collection of biospecimens. Misconceptions regarding biospecimen research among minority and underserved populations were identified, resulting in challenges in recruiting these groups. Institutions reported strategies to overcome these barriers and misconceptions by focusing on educational efforts, institutional safeguards, and engagement of patient advocacy groups.
The study concluded that a paradigm shift is necessary to overcome these barriers to health equity. The CDRN network describes ways to leverage the expertise of diverse stakeholders and institutional resources that will create the momentum necessary to advance this effort. The CDRN can improve the work of individual facilities and institutions and provide opportunities for collaboration that will increase participation within underrepresented minority populations .
Source: Simon, M. A., de la Riva, E. E., Bergan, R., Norbeck, C., McKoy, J. M., Kulesza, P., Dong, X. Q., Schink, J., & Fleisher, L. (2014). Improving Diversity in Cancer Research Trials: The Story of the Cancer Disparities Research Network. Journal of Cancer Education, 29(2), 366–374. https://doi.org/10.1007/s13187-014-0617-y