January 19th, 2022
Spotlight: Initiatives Driving the Conversation in Clinical Trial Diversity
10 Groups & Initiatives Advancing the Conversation Around Clinical Trial Diversity
We spend a lot of time analyzing factors that hold back clinical trial recruitment and enrollment to craft better solutions. Disparities in racial and ethnic representation among clinical trial participants are one set of challenges that continue to plague the clinical research field.
A trial’s success depends on this diversity—a therapy’s safety and efficacy can’t be effectively tested in a pool of subjects that don’t reflect the target population. But the field is falling short. In the U.S., nearly 40% of the population is made up of minority racial and ethnic groups. However, an analysis of trials for drugs approved in 2020 found three-quarters (75%) of participants were white.
While solving this issue is a daunting task, we are inspired to see many organizations and initiatives taking aim at the problem from all angles. Here we’ll highlight 10 groups and programs that are moving the needle in clinical trial diversity.
Shedding Light on the Issue
Pfizer - Using Data to Approach the Diversity Gap
Pfizer conducted a deep dive on enrollment data from 2011 to 2020, compiling a diversity report that showed racial disparities in clinical trial participation levels compared to U.S. census levels. Pfizer noted the importance of establishing this baseline to develop targeted solutions to reach its goals of racial and ethnic diversity. The transparent sharing of these data, good or bad, is a critical step in establishing public awareness of these disparities. Pfizer plans to continue publishing quantitative data collected through these efforts to inform and develop solutions and encourage other pharma companies to follow suit.
Bristol Myers Squibb + GRYT Health - Highlighting Disparities in Oncology Clinical Trials
BMS and GRYT Health have teamed up to create the Diversity in Oncology initiative, which aims to help certain groups—particularly those in underserved communities—access clinical trials. The initiative has organized a series of live, interactive online sessions for patients, caregivers, providers, and researchers, addressing topics from academic-community partnerships in clinical research to experiences of traditionally underrepresented patients and physicians in oncology.
Strengthening & Educating Communities
Eli Lilly & Care Access - Delivering Clinical Research Sites to Underrepresented Communities
Despite a recent push to decentralize clinical trials, access to participation remains a major obstacle for many patients, particularly those in underrepresented communities. Eli Lilly has partnered with Care Access to establish “Sites on Demand” for its trial for high-risk, early-stage, HER2-positive breast cancer. Care Access will place a particular emphasis on enrolling Black women with early-stage breast cancer, as they have a roughly 40% higher mortality rate compared to white patients. In doing so, this partnership will bring the clinical trial closer to the population that the therapy is intended to serve.
Amgen - RISE-ing to the Challenge of Greater Equity in Clinical Research
Amgen’s RISE (Representation in Clinical Research) Program aims to address diseases disproportionately affecting patients of color and to remedy failures to adequately represent these populations in clinical research. By funding groups such as the Lazarex Foundation, sponsoring conferences dedicated to the issue, and supporting community partnerships that increase access to clinical trials, RISE is working to support patients and clinicians in increasing trial diversity.
Stand Up to Cancer – Partnering with Celebrities, Advocates, and Pharma to Reach Underrepresented Communities
Stand Up to Cancer is a nonprofit dedicated to funding ambitious efforts in research and awareness. Bringing health equity in cancer care to all patients is a cornerstone of their initiatives. Since January of 2020, the group has required that all incoming grant proposals address strategies for the recruitment and retention of clinical trial patients from medically underserved communities. Stand Up to Cancer’s initiatives boast an impressive list of backers, including Bristol Myers Squibb, Amgen, Merck, and more. Additionally, a new series of campaigns aiming to address disparities in preventive care and clinical trial participation by reaching communities of color has featured celebrities such as Common, Cedric the Entertainer, and Jamie Foxx. Cedric the Entertainer’s PSA encourages those facing cancer diagnoses to explore treatment options available through clinical trials and directs viewers to resources offered by Stand Up to Cancer.
Supporting & Empowering Patients
Lifeology - Connecting Underrepresented Communities to Clinical Research with Art
Through a platform combining art and science to create approachable stories to educate people about research, health, and clinical trials, Lifeology’s quick online courses on these topics aim to connect communities classically excluded from the field with accessible and empathetic lessons. Now, major pharma companies like Eli Lilly are working with Lifeology to create educational materials around clinical trials to reach Black, LatinX, and Native American participants. By collaborating with diverse artists and storytellers, Lifeology is creating relatable visual stories that speak to the unique needs, concerns, and challenges faced by underrepresented communities.
Karen’s Club - Empowering Patients to Participate in Clinical Trials
When Karen Peterson was diagnosed with Stage 4 Triple Negative Breast Cancer, she immediately began researching potential treatment options for her case. Fiercely advocating for herself while navigating the treatment landscape, she eventually found and enrolled in an immunotherapy clinical trial that ultimately saved her life. However, the challenges Peterson encountered as an African American while pursuing a clinical trial led her to start Karen’s Club. This nonprofit organization provides resources and support to empower patients from traditionally underrepresented groups to pursue clinical research as a treatment option.
Building a More Inclusive Future
Bristol Myers Squibb + National Medical Fellowships - Training the Next Generation of Clinical Investigators
BMS Foundation and National Medical Fellowships have united to create a career development training program for early-stage clinical investigators. The program’s goal is to build a “pipeline of community-oriented clinical trialists of diverse backgrounds who are committed to increasing inclusion, equity, and diversity in the conduct of clinical and translational research,” supporting increased representation from the ground up.
Novartis - Aiming at the Root Causes of Systemic Inequity in Clinical Research
Novartis has launched a collaborative 10-year initiative to address root causes of systemic inequity in the trial space, including funding for historically Black colleges & universities, mentoring, the establishment of three new research centers at Morehouse College, and more to increase representation among medical researchers and to build a foundation for increased access and trust in clinical research. Additionally, Novartis expresses ambitious plans to encourage peer companies to partner with the initiative and support the effort further.
Abbott - Building Trust in Clinical Research to Increase Diversity & Inclusion
A documented history of abuses by the medical establishment continues to cast a long shadow of mistrust over clinical research for many patients of color. Abbott has announced plans to spend $5 million over the next five years to support scholarships for medical schools at historically Black colleges & universities and minority nursing associations with the hope of increasing representation and building trust within the medical research community. Additionally, the company will invest in additional trial sites, investigator training opportunities, and means of increasing patient access and participation such as transportation vouchers and interpreters.
We know it takes a village to solve an issue as substantial as the lack of racial and ethnic representation in clinical trials. While there’s much left to be done, we’re inspired by these initiatives and what they seek to accomplish, and we encourage you to learn more about their work. These leaders in the field are looking beyond the goal of diversifying clinical trials—they’re laying the foundation to make the future of clinical research better for everyone.
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