2023 Pride Month: How companies are modernizing clinical research for the better
Historically, diversity in the clinical trials industry has been an uphill battle. This is particularly true among LGBTQ+ populations. Although it can be difficult to know exactly how many individuals identify as LGBTQ+, a report put forth by the Human Right Campaign Foundation estimates as of 2021 “at least 20 million adults in the United States could be lesbian, gay, bisexual, or transgender.” Yet, access to inclusive clinical trials has historically been an uphill battle for LGBTQ+ populations.
An article published in 2019, by the Executive Director of the National LGBT Cancer Network, Scout, M.A, Ph.D., highlights just how these inequities are affecting these communities. Scout, M.A, Ph.D. shares that individuals participating in trials, often, are not asked about their sexual orientation. Even though people who identify as LGBTQ+ may be participating in trials because this important demographic information is not collected, connections between individuals' LGBTQ+ status and their health - often due to environmental and social factors - are often overlooked.
In this article, Scout, M.A, Ph.D. includes an example from a review of tobacco regulatory science research on vulnerable populations, “Tobacco use is one of the biggest risk factors for cancer. LGBTQ people use tobacco at rates that are 40% higher than the rest of the country. Years ago [...] the FDA funded Tobacco Centers for Regulatory Science, research centers tasked with understanding how tobacco affects people, especially vulnerable populations like LGBTQ persons. [...] After the FDA and NIH invested $273M in 14 different centers, the centers published 71 research manuscripts on vulnerable populations. How many included mention of LGBTQ persons? Two.” This is just one example Scout, M.A, Ph.D. gives shedding light on how more vulnerable and underrepresented populations can slip through the cracks in clinical research.
As a company working to democratize clinical research by bringing quality medical innovations to patients faster and improving human well-being through more efficient clinical studies, Curebase is committed to diversifying clinical trials every day. We work to offer tech-driven tools and services, built in-house, to run clinical studies that reach more patients through in-home, community-based, and site-based care, leading to faster, cost-effective, and diverse studies.
Although it will take an industry-wide approach to address the grander inequities that exist in clinical research, the flexible trial models we offer help sponsors design trials in a way that allows patients to participate more easily and on their own terms where they feel most comfortable by bringing clinical research to them.
In the past, if patients wanted to participate in a clinical trial they had to travel to academic/research sites and interact with the providers staffing that site. If they felt judged, excluded, uncomfortable, or misunderstood because of an aspect of their identity, such as sexual orientation or gender identity, they had no other options for participation.
Modernizing clinical trials means that patients, today, can learn about trials online, from their trusted primary care providers, or local urgent care, and participate on-site in local community care centers. This is just one aspect of how DCTs are adding valuable components to clinical research that benefit patients and data quality.
The adoption of sophisticated, but easy-to-use, eClinical platforms gives patients a way to self-report important healthcare information, interact with care providers, including telemedicine capabilities, and track their own progress through a study.
There is no question that the fight for greater diversity and representation in clinical trials is ongoing, but the call to action is clear: modernizing clinical research is paramount. Even small steps toward addressing disparities are invaluable if they are helping underrepresented patient populations. The call to DCTs is a call to expand patient access, grow diversity, and give patients options in how they participate.
To learn more about this and related topics take a look at the Center for Information and Study on Clinical Research Participation (CISCRP)’s Considerations for LGBTQ+ Inclusion in Clinical Research.