ENACCT, Education Network to Advance Cancer Clinical Trials

Programs

Why is This Program Important?

BECAUSE Only 3 to 5 percent of all adult cancer patients participate in clinical trials

BECAUSE Most people with cancer are unaware that participation in clinical trials was an option for their treatment.

BECAUSE The clinical trial participation rate is even lower among minority groups and the medically underserved, who tend to have higher cancer mortality rates than the population as a whole.

BECAUSE even though enhancing awareness of clinical trials among both cancer patients and health care providers is considered one of the most important strategies for improving patient accrual, no evidence-based research helps guide such efforts.

BECAUSE experts continually recommend new community based approaches for clinical trial outreach and accrual , calling for “enhanced efforts at minority patient recruitment and retention to (cancer) clinical trials” and noting that “success (in clinical trials accrual) will require sustained, aggressive action, and new partnerships between policymakers, healthcare professionals, professional societies, and underserved communities.”

BECAUSE so much attention has been paid to reforming the clinical research infrastructure, but little attention has been paid to the difficulties in patient outreach, recruitment, and retention, especially in underserved communities.

The ENACCT PEP answers a clear need for a new type of approach to addressing the problems of cancer clinical trial accrual and public awareness. It is one that

recognizes the skills, assets, networks of trusting relationships, and mediating structures of local communities that can have a positive influence on health.
can increase trust and bridge cultural gaps between partners (traditionally a critical barrier in clinical trial outreach and education)
can increase the possibility of overcoming the understandable distrust of research on the part of communities that have historically been the “subjects” of such research.
creates a new structure that 1) assists researchers who seek a population to study, (2) encourages collaborations with researchers from underrepresented populations, and (3) facilitates the recruitment and planning processes for conducting trials and
creates better informed and more effective practices for clinical trial education that are replicable grounded in “real-world” experience.

The lessons learned from these partnerships will help inform and improve patient recruitment planning and activities nationwide.

Brawley, O. (2004). The study of accrual to clinical trials: can we learn from studying who enters our studies? Journal of Clinical Oncology, 22(11), 2039-2040.

In 2004, the Trans-HHS Cancer Health Disparities Progress Review Group (PRG) proposed a new approach to clinical trials--“the creation of infrastructures (“units”) that work within a community to facilitate clinical research investigations in areas of large health disparities. These research mediators would be independent from researchers, universities, and other research entities. The units would be fully integrated within a community, and they would educate the community, encourage community members to participate in research, and advocate for tangible outcomes for the community following the completion of research trials. The units would also (1) assist researchers who seek a population to study, (2) encourage collaborations with researchers from underrepresented populations, and (3) facilitate the recruitment and planning processes for conducting trials...
Potential impacts of these units would benefit both the community and researchers. Information on simple, preventive behaviors and tangible medical service would be provided to the community. Additionally, education of these communities in medical science would improve the recruitment and retention of research participants and would lead to more trials that are of greater importance to the community. Real dialogue between clinical researchers and the community would enable the latter to participate in the planning of trials to the extent that health issues critical to them are considered. These units would be able to act as brokers of the community looking for researchers who are studying diseases of great importance to that community, in addition to their role as brokers for researchers seeking participants…”

Christian, M. C., & Trimble, E. L. (2003). Increasing participation of physicians and patients from underrepresented racial and ethnic groups in National Cancer Institute-sponsored clinical trials. Cancer Epidemiology Biomarkers & Prevention, 12, 277s-283s.