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This week, 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. At the virtual workshop, titled “Partnering for Health Equity: Advancing Research Through Representative Clinical Trials,” participants joined breakout discussions, panels and facilitated conversations designed to pressure test actionable ideas to enhance clinical trial diversity. Topics included:
- The Root Causes of Health Inequity
- The Patient Perspective
- Building a Sustainable Community Based Infrastructure Focused on Clinical Trial Diversity
I had the chance to speak with Terri Carmichael Jackson, JD, executive director of the Women’s National Basketball Players Association about that last point. She shared how community leaders can use their influence to help build vaccine confidence among underserved communities, including Black and Brown Americans, and why the participation of diverse Americans in clinical trials is important for future vaccines and equitable public health outcomes. A clip from that conversation is below.
At the workshop, we also heard from patient and community advocates, including Jason Resendez of UsAgainstAlzheimer’s Center for Brain Health Equity and Tom Anderson of the Association of American Indian Physicians. Many of the participants highlighted the need for trusted health messengers, clinical trial sites and touchpoints located in underserved communities, sustained community outreach and transparent and standardized success metrics.
Policymakers – including Marcella Nunez-Smith, MD, MHS, Chair of the Presidential COVID-19 Health Equity Task Force; Senior Advisor of the White House COVID-19 Response Team; Associate Dean, Health Equity Research, Yale School of Medicine; and Director, Equity Research and Innovation Center, Yale School of Medicine, and Robin Kelly, MA, PhD, Congresswoman from Illinois 2nd District – shared how the public and private sectors can come together on this important issue.
Participants across the workshop agreed that no one company or organization can move the needle alone – it’s going to take collaboration from across the clinical trial and health care ecosystem. But with PhRMA member companies responsible for a large share of clinical trials, we’re well-positioned to collectively make a difference in this space. Biopharmaceutical industry leaders, including Alexander Hardy, CEO of Genentech, and Ramona Sequeira, President of U.S. Business Unit and Global Portfolio Commercialization at Takeda, shared how their companies are taking steps to help achieve greater equity in our health care system and the clinical trials process.
Making progress will take time and effort, and we look forward to continuing this work to bring about real change in the clinical trial ecosystem. In coming weeks and months, PhRMA will be sharing clips, insight, and reports coming from the workshop. See those reports and follow our efforts on improving health outcomes for patients in underserved communities here.
Stephen J. Ubl
Stephen J. Ubl is president and chief executive officer of the Pharmaceutical Research and Manufacturers of America (PhRMA), which represents America’s leading biopharmaceutical research companies. The U.S. biopharmaceutical sector directly employs more than 800,000 Americans and invests more than $100 billion in research and development annually – more than any other industry in America.
Ubl leads PhRMA’s work preserving and strengthening a health care and economic environment that encourages medical innovation, new drug discovery and access to life-saving medicines. Ubl is recognized around the world as a leading health care advocate and policy expert who collaborates successfully with diverse stakeholder groups – including patient and physician groups, regulators, public and private payers, and global trade organizations – to help ensure timely patient access to innovative treatments and cures. The New York Times writes, “If anyone can find areas of agreement with the critics, or at least work productively with them, it may be Mr. Ubl. He is more conversant with the intricacies of health policy, and more adept at the politics."
Previously, Ubl served as president and CEO of medical technology association AdvaMed, where he helped facilitate landmark reforms related to the U.S. Food and Drug Administration product review process and Medicare’s coverage and reimbursement of medical technologies. He led the industry’s defense of breakthrough R&D, successfully delaying an innovation-stifling device tax, and, in 2013, was recognized by a leading industry publication as one of 10 people to have a lasting impact on the medical technology industry.
Ubl has worked extensively with patient advocacy organizations in health policy, including longstanding service on the board of the National Health Council, a leading umbrella organization for voluntary health care organizations and has been personally involved with JDRF (formerly known as the Juvenile Diabetes Research Foundation).
He is routinely recognized as one of Washington’s most effective advocates. Ubl has been recognized on Business Insider’s “DC Healthcare Power Players” and Modern Healthcare’s “100 Most Influential People in Healthcare.” He is identified as a top health influencer by Medical Marketing & Media and PR Week magazines.
https://x.com/steveubl
https://www.linkedin.com/in/steveubl/
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