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Advocate for the swift passage of the Patient Device Data Access Act through Congress.
Run a focused lobbying campaign to move the Patient Device Data Access Act through Congress and secure a clear, enforceable right for patients to get their patient-specific device data on request. Prioritize committee movement and a viable legislative vehicle (including opportunities to attach to larger packages) while defending against watering down that right with extra gatekeepers or “summary-only” access. Use patient stories and bipartisan champions already identified in this cause to keep momentum high through negotiations.
Why this works
- Legislation creates a clear, enforceable mandate that covers all manufacturers – a universal solution.
- It overrides any foot-dragging by industry and gives FDA authority to make rules with teeth (e.g., penalties if companies fail to comply).
- A law also raises the issue’s profile, cementing patient data access as a right going forward (harder to reverse).
Public Citizen is a nonprofit consumer advocacy organization founded in 1971 by Ralph Nader. It works to ensure that all citizens are represented in the halls of power by promoting public health and safety, government transparency, and corporate accountability. Public Citizen fights for campaign finance reform and ethics (it helped create the Office of Congressional Ethics:), advocates for safe pharmaceuticals and medical devices, pushes for strong consumer protections in trade deals, and litigates to enforce health, safety, and environmental laws.
Mechanism
How Public Citizen uses funding
- Define the objective: a clear right to obtain all patient-specific device data on request.
- Build the case with briefs and patient stories that show why summaries aren’t enough.
- Engage committee offices and leadership with targeted outreach and testimony planning.
- Track amendments and respond quickly when language shifts toward “summary-only” access.
- Close the loop by documenting outcomes and preparing implementation guidance and oversight.
Partner notes
Partner notes coming soon.