Patients are often invoked in health policy debates but are seldom able to meaningfully shape and drive those policies. That is the challenge Generation Patient—a nonprofit created for and by young adults with chronic and rare conditions—is working to address with the help of its 2025 Bridging Bioethics Research & Policymaking (BBRP) grant, Empowering Independent Patient Advocacy to Drive Meaningful Health Policy Reform.
The Generation Patient team is setting out to equip congressional staff with evidence-based tools for ethically and effectively engaging with patient advocacy groups. At the same time, they also want staff to be able to assess an advocacy group’s independence from private healthcare and industry interests to help ensure they’re truly reflecting patient interests.
While Generation Patient’s BBRP project is still in progress, it has quickly moved from concept to action. The organization has used its experience navigating Capitol Hill—along with guidance from Faculty Scholar Alum Holly Fernandez Lynch, JD, and Reshma Ramachandran, MD—to develop a set of educational materials for congressional staff. The materials include:
- A one-pager breaking down the importance of independent patient advocacy and the risks of out-sized industry influence
- Case studies demonstrating how industry influence in policymaking can play out and impact patients
- A three-step guide for vetting a patient organization’s independence
Before rolling out the materials widely, the Generation Patient team conducted pilot interviews with staff from seven congressional offices across political parties and both chambers of Congress. After speaking with legislative correspondents, directors, and health counsels, they received feedback that is helping them refine the materials by making them more accessible, practical, and responsive to the realities of day-to-day congressional work.
From those pilot interviews, Generation Patient identified a need for concrete methods for vetting patient organizations prior to meeting with them. They developed an additional resource that teaches staff how to evaluate organizations by using email communications, publicly available information on the IRS website, and organizations’ own websites.
Generation Patient is now entering the next phase of the project: larger-scale education efforts with congressional staff, as well as outreach to patient communities and the media. Rather than simply studying the problem of patient engagement in policymaking, Generation Patient is building and disseminating tools that can change how policymakers work—and whose voices they hear.
