By Rachel Baldwin, Associate Product Marketing Manager, Teckro
When it comes to the importance of diversity, equity and inclusion (DEI), we all welcome the acceleration in global awareness and discussion. For the clinical research industry, finding common ground among sponsors, sites, patients and community advocates is a critical first step to expanding DEI conversations. Whether it’s reading a “good news” story or learning from things that missed the mark, one key factor is universally clear: it is paramount that those occupying underrepresented demographics and identities are central and present for the conversation.
Finding Common Ground: Clinical Trial Inclusion from Perspectives of Sites and Patients is our most recent webinar hosted by the Society for Clinical Research Sites (SCRS). Teckro’s own Director of Site Engagement Silvina Baudino was joined by Luckie Alexander, founder of Invisible Men and LGBTQ+ advocate, and Chris Komelasky CEO and co-founder of SiteBridge Research.
Silvina, Luckie and Chris explored topics including:
Silvina started by outlining the current clinical trial industry state of affairs. The most recent draft guidance from the FDA on equitable participation for individuals from underrepresented racial and ethnic populations is an excellent step and will help to move the needle. However, we need to remember that people are multidimensional and often occupy intersecting identities. Particularly if we consider the LGBTQ+ community, they are often only considered for clinical research around HIV and sexual health, which limits engagement and overlooks clinical trials as a care option for other conditions and disease areas.
Silvina also discussed findings in a report published by Teckro of experiences and interactions with clinical research and healthcare shared by LGBTQ+ patients and community members, which is the result from a virtual advisory meeting facilitated with the Center for Information and Study on Clinical Research Participation (CISCRP). The report also explores the insights and recommendations for improving future patient experiences in clinical trials.
As both an LGBTQ+ patient and community member as well as a clinical trial recruiter, Luckie has an interesting insight into both sides of the study participation coin. Luckie was one of the advisors in the LGBTQ+ focus group hosted by CISCRP. He shared that for trans or LGBTQ+ folks, language and awareness of unique challenges are key to increasing trust. Gendered language excludes members of these communities by default, for example “women’s health” topics fail to account for trans men who could still be impacted by and/or need treatment for reproductive health issues. Luckie has found in his role of recruiting patients that even as a community member and trusted messenger, people are still hesitant to participate in clinical research.
The starting point for many DEI initiatives has been heavily centered around race and ethnicity. While this is not a bad thing, a visible gap has existed for decades with a history of poor access and equity issues across many communities. The panel discussed how it is important not to pause at one identity, to be intentional, and to continually consider intersectionality. Download the report.
Another hot topic is authenticity. It’s widely recognized that popping up in community spaces and just attempting to recruit clinical trial participants off the bat has been poorly received and largely unsuccessful.
From the site perspective, Chris discussed the transactional nature of participant quotas and breaking the paradigm of study specific recruitment. SiteBridge Research’s framework for community engagement strategies focuses on sustained connectivity and trust. As ever, listening is key. Chris expanded on the need to be early, authentic and consistent when engaging with a community, and to do so in a broader, omnipresent manner – not as a specific, budget-constrained, outreach for an individual study. This supports an impactful network approach before studies even happen and builds roots and trust in those communities ahead of time.
SiteBridge Research offers a toolkit for talking about clinical research, and also has a Champion Program, where champions help dispel misinformation, provide education and strengthen community connections. The toolkit packages general disease guidance, health literacy and clinical trial information and can be shared with community leaders for dissemination. Assorted industry partners, such as CISCRP and Greater Gift, are working with SiteBridge Research to develop accessible, adaptable, multilingual content across these areas. With a continued reach, a champion network can be enabled and empowered.
Community engagement should not be seen as another term for patient recruitment. Alongside using digital and virtual channels for raising awareness and disseminating information, there should be genuine, value-adding contributions in a face-to-face setting before recruitment is even on the table. This includes a presence at local events and activities, physical boots on the ground offering health information, and a safe place for questions and honest conversation. Later down the line, when trust has been earned, relationships fostered, and communication lines established, members of that community may be more receptive to clinical research as a care option and consider participating in clinical trials. Following that is when outreach may be enhanced with community advocates that help with spreading awareness.
With many DEI conversations and initiatives, there is an understanding that people can be afraid of saying the wrong thing, for example when interacting with or addressing an individual from the LGBTQ+ community, and that this may make some physicians or healthcare providers avoidant. The panel talked about individual and organizational level responsibility. Luckie shared his view that for a relationship with a healthcare provider to be both positive and feel safe, physicians need to take personal responsibility to learn about and engage with different communities to truly understand what they’re going through and what they need.
At an organizational level, the key responsibility is to ensure feedback and input are captured from across an intersectional breadth of different communities and built into the trial design and study protocol. Additionally, there needs to be an embedded understanding of and commitment to diversity, equity and inclusion in the organizational culture. This includes providing staff DEI training and ensuring there are no barriers to organizational staffing opportunities for individuals or physicians from across diverse communities.
Luckie further shared that while there are specific perspectives and nuances within different communities, what cannot be lost is the commonality of everyone just wanting respect. Communities talk to each other and while good news travels fast, bad news travels faster. If respect for all is embedded at the very core of an organization, then it will be known for being a safe space and the likelihood of positive community engagement is exponentially increased.
Meet Teckro at booth #28 at the SCRS Diversity Site Solutions Summit, March 30-31, 2023, in Austin TX.