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
Industry-Wide Principles
Clinical Trials Workshop
Report on Key Strategies
Community Based Partnership
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.
Some of this history can be found here:
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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.
Slavery
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
Henrietta Lacks
Radioactive Iodine
1. 1619 - 1865 Slavery
2. 1845 - 1849 Gynecological Experimentation on Enslaved Women
3. 1870 Closing of Medical Schools and Exclusion of Future Health Providers
4. 1930s - 1970s Birth Control Experimentation in Puerto Rico
5. 1932 - 1972 The Tuskegee Syphilis Study
6. 1951 Henrietta Lacks
7. 1956 - 1957 Radioactive Iodine
Slavery (1619 - 1865)
Illustration by Toya Beacham. Click here to learn more about the artist.
Gynecological Experimentation On Enslaved Women (1845 - 1849)
Illustration by Toya Beacham. Click here to learn more about the artist.
Closing Of Medical Schools and Exclusion Of Future Health Providers (1870)
Illustration by Toya Beacham. Click here to learn more about the artist.
Birth Control Experimentation in Puerto Rico (1930s - 1970s)
Illustration by Toya Beacham. Click here to learn more about the artist.
The Tuskegee Syphilis Study (1932 - 1972)
Illustration by Toya Beacham. Click here to learn more about the artist.
Henrietta Lacks (1951)
Illustration by Toya Beacham. Click here to learn more about the artist.
Radioactive iodine (1956 - 1957)
Illustration by Toya Beacham. Click here to learn more about the artist.
Resources
A Look at Company Efforts to Enhance Clinical Trial Diversity
PhRMA
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.
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