3 min read
Diversity, equity and inclusion in clinical research starts with awareness of the perceptions of different communities. Repairing and reducing mistrust within underrepresented communities means learning how to recognize the obstacles and increase sensitivity for inclusion. Listening to people within these communities can guide health and research inclusivity initiatives.
Teckro engaged the Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit organization, to organize and facilitate a virtual advisory meeting among LGBTQ+ patients and community members. There is no one-size-fits-all to engaging LGBTQ+ individuals in clinical research or in healthcare overall, but the first step is listening. How one identifies is an integral part of traditional inclusion or exclusion from clinical research trials and limits access for people who do not self-identify in traditional categories.
Our goals were to:
- Better understand general healthcare experiences of individuals in the LGBTQ+ community, as well as relationships and interactions with healthcare providers
- Assess awareness of clinical research and potential drivers for participation and retention, as well as highlights and lowlights of past clinical trial experiences
- Identify ways to raise awareness among and better engage the LGBTQ+ community in clinical research
We are broadly sharing results from the four hours of discussion to help inform considerations and best practices when engaging with the LGBTQ+ community, ultimately optimizing clinical trial experiences in the future.
Reflections on Inclusion
Teckro's Malia Lewin and the World Ovarian Cancer Coalition CEO Clara MacKay share their thoughts after participating in the LGBTQ+ advisory board.
Broadening the Lens of Diversity for More Inclusion in Clinical Research
Malia Lewin shares her perspective on why diversity, equity and inclusion are important for clinical trials and her key learnings from the LGBTQ+ advisory board.
Improving LGBTQ+ Inclusivity in Ovarian Cancer Care
Clara MacKay writes about recent initiatives to reach the LGBTQ+ community as part of an effort to make sure that no person with ovarian cancer is left behind.
Ideal Clinical Trial Design and Experience
Advisors were asked to brainstorm the ideal clinical trial participation experience to encourage LGBTQ+ inclusion, including:
What the Study Clinic Visit Would Look Like
Expectations of Study Staff and Personnel
Practices, Strategies and Support
The Most Appealing Clinical Trial Model
Through the advisory meeting hosted by CISCRP, our goal was to surface some of the issues that create barriers to care for the LGBTQ+ community. Out of the advisory board meeting, we believe there are some simple steps for inclusivity of LGBTQ+ individuals and the LGBTQ+ community in all aspects of care:
- Remove unnecessarily gendered language, imagery and décor from forms, patient materials, and clinical areas
- Create inclusive options on multiple-choice forms to account for all LGBTQ+ identities
- Refine approaches to clinical lines of questioning to ensure sensitivity to LGBTQ+ identities and focus on questions required for care and research
- Include trusted LGBTQ+ advocacy organizations and local community centers in health and research initiatives
Through projects such as this collaboration between Teckro, CISCRP and our community advisors, we hope to invite patient and prospective patient voices from a breadth of communities to inform actions that advance inclusion in clinical research. For more information or to talk about the advisory board meeting in greater detail, email us at connect@teckro.com.