CISCRP proudly participated in a 2019 collaboration with Biogen, the National Minority Quality Forum (NMQF), Tufts Center for the Study of Drug Development (CSDD), Langland, H.E.A.L. and the FDA’s Office of Minority Health and Health Equity to engage directly with the general public through grass-roots outreach campaigns and events; to listen to their level of understanding, awareness, and concerns through digital channels, in-person meetings and interviews; and to provide resources to support education about clinical research participation. These efforts proved valuable and impactful, receiving endorsement to continue to build and expand these efforts in 2020 and beyond. This innovative 2019 project has recently been nominated as a finalist in the 2020 Citeline Awards for Medidata Clinical Partnership of the Year.
The team worked to better understand the challenges and barriers encountered by African American and Hispanic/Latinx communities in the US regarding awareness, access to clinical research participation, and health care provider involvement in evaluating research opportunities.
As a part of this large engagement campaign, Tufts CSDD conducted in-depth interviews among minority physicians, investigators and nurses to explore barriers and challenges to clinical trial access and referral, as well as high incidence of minority investigator drop-out rates. An online social listening campaign was launched to follow conversations and sentiments around clinical trials among African Americans and Hispanic/Latinx communities. CISCRP and the NMQF organized public-facing programs that offered free health screenings and educational sessions. The FDA participated in Biogen’s Patient Engagement Day and spoke to the importance of engaging underrepresented minorities in clinical trials.
Insights obtained from these conversations will assist the team in enhancing current structures and implementing new efforts to increase access to clinical trial sites and site participation in clinical trials. Feedback provided by online social listening and healthcare providers reinforced existing barriers to clinical research participation for members of diverse communities.
“While the public continues to acknowledge the importance of clinical research in identifying new medicines, general awareness and participation in clinical research studies remain low for a variety of reasons, and minority populations continue to be underrepresented in clinical trials,” said Ellyn Getz, Associate Director, Development and Community Engagement for CISCRP. “Many learnings from this year-long program will be applied in 2020 to patient engagement strategies, protocol entry criteria, site selection, and patient outreach.”
In 2019, approximately 2,000 people attended NMFQ’s community health events and CISCRP’s AWARE for All programs and learned about clinical trial participation. Over 500 event attendees surveyed indicated that they are somewhat or very interested and willing to participate in a clinical trial and are eager to participate if invited by their health care provider. This indicates an opportunity to further engage, educate, and connect underrepresented patients with clinical trial site teams.
This innovative collaboration has built a strong foundation for continued grass-roots outreach efforts. Biogen is supporting the AWARE for All: Clinical Research Education event series over the next five years as a member of CISCRP’s AWARE Industry Consortium. The consortium addresses the critical need to improve patient diversity in clinical trials.
For more information, please contact Joan Chambers, CISCRP’s Senior Director, Marketing and Outreach, at firstname.lastname@example.org or Ellyn Getz, Associate Director, Development & Community Engagement, at email@example.com.