Improving Clinical Trial Diversity is Critical to Health Equity
Enhancing clinical trial diversity is a highly complex challenge that requires a community-based, multi-stakeholder approach.
Learn more about PhRMA’s efforts to address the systemic barriers that can deter underserved communities from participating in clinical trials, so that people who want to participate, can.
Equitable Breakthroughs in Medicine Development is a comprehensive effort to increase diversity in clinical trials and address systemic barriers to participation by communities of color. This effort seeks to help underrepresented patients be more involved in the research and development of potential life-saving medical treatments.
Funded by a grant from PhRMA, Equitable Breakthroughs in Medicine Development will work over the next 18-months to bring together diverse communities, patients, providers, health partners, community organizations and academic institutions, along with the support of the pharmaceutical industry, to pilot a network of sustainable, connected, community-based trial sites.
Community-based trial sites will:
- Partner with trusted messengers and community leaders to raise education, awareness, and support for clinical trial participation.
- Provide the resources and technical support for local sites to be successful, sustainable, and thrive.
- Build training opportunities and mentorship for investigators and staff.
Changing the Paradigm to Enhance Clinical Trial Diversity
Since June of 2020, PhRMA has convened thousands of stakeholders as we have worked to explore a new potential infrastructure with diverse communities, health systems and academia that seeks to show proof of concept for a network of connected, community-rooted trial sites.
With strong support from the biopharmaceutical industry, this effort seeks to create a sustainable, community-based infrastructure focused on clinical trial diversity
How We Got Here: A Timeline
Clinical Trial Diversity
October 2020: Industry-Wide Principles to Enhance Diversity in Clinical Trial Participation
PhRMA recently announced first-ever, industry wide principles on clinical trial diversity.
Critical to enhancing clinical trial diversity is addressing the systemic barriers that can deter underserved communities from participating in clinical trials, so that people who want to participate, can.
Clinical Trial Diversity
June 2021: Insights From Our Stakeholder Workshop
In June 2021, 500+ health care and community members from over 150 organizations came together at PhRMA’s first stakeholder workshop focused on improving diversity in clinical trials.
Take a look at the highlights from the in-depth conversations.
Clinical Trial Diversity
October 2021: Five Key Strategies for Enhancing Diversity in Clinical Trials
A recent report outlines five critical strategies for enhancing diversity in clinical trials and is based on more than a year of research and feedback from more than 500 stakeholders across 150+ organizations.
Five Key Strategies:
- Create a network of clinical trial sites in underserved communities.
- Develop a diverse pool of investigators and staff.
- Establish long-term relationships and invest in the community.
- Engage the community in conversations.
- Provide sustainable support and standardized platforms.
Community Based Partnership
Summer 2022: Equitable Breakthroughs in Medicine Development
Equitable Breakthroughs in Medicine Development, a first-of-its-kind, cross-collaborative, community-based effort, seeks to tackle systemic challenges to clinical trial participation and share our findings broadly to help drive change.
This partnership is focused on supporting local sites and patients in underrepresented communities to enhance clinical trial diversity in a sustainable way.
As we endeavor to push forward to change the future, we must first understand the past
Colonization, slavery, segregation, systemic racism—these experiences continue to disproportionately impact underserved communities and have created a foundation of mistrust rooted in history
Events like these lead to lasting mistrust and impact how communities of color approach health care. This mistrust, combined with social and economic barriers, is amplified when it comes to clinical trials. We are committed to working with communities to address this.
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Here is a small sampling of formative events in U.S. history that have shaped the relationship communities of color have with medical research and the health care system. This list is by no means exhaustive, but we hope it helps pave the way for candid dialogue that guides our work on equity.
Gynecological Experimentation on Enslaved Women
Closing of Medical Schools and Exclusion of Future Health Providers
Birth Control Experimentation in Puerto Rico
The Tuskegee Syphilis Study
Slavery (1619 - 1865)
Gynecological Experimentation On Enslaved Women (1845 - 1849)
Closing Of Medical Schools and Exclusion Of Future Health Providers (1870)
Birth Control Experimentation in Puerto Rico (1930s - 1970s)
The Tuskegee Syphilis Study (1932 - 1972)
Henrietta Lacks (1951)
Radioactive iodine (1956 - 1957)
A Look at Company Efforts to Enhance Clinical Trial Diversity
PhRMA member companies are taking individual steps to build trust and encourage broader, more diverse clinical trial participation. A recent survey of many PhRMA members found 97% of respondents reported specific measures they’re taking to address access issues for clinical trial participants. In the pages of this report, you’ll find dozens of case studies covering this work.
Committing to diversity, equity and inclusion: A call to action for clinical trials
The COVID-19 pandemic is the worst public health emergency the world has encountered in over a century and one that has universally impacted the social, political, economic and medical fabric of our lives; it has also exposed significant and systemic health disparities in health care. The disproportionate rates of infection and of disease-related mortality of people of color have been well-documented. Given these disparities, it is critical that trials for COVID-19 vaccines and therapeutics ensure diverse participation. The few exceptions that have been reported, however, prove that recruitment and retention of underserved populations is possible with effort, planning and intentionality of purpose.
Diversifying clinical trials and fighting disease requires equity and trust
The COVID-19 pandemic has left no person unaffected, but Black Americans have been disproportionately impacted. Black adults are nearly four times more likely to be hospitalized from the virus and nearly three times more likely to die from the virus than their white counterparts. At the same time, recent polls highlight COVID-19 vaccine hesitancy within Black communities. In fact, only one in four Black Americans (24%) plan to get the vaccine compared to other racial and ethnic groups, and Black Americans are significantly trailing in vaccination rates.