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
AdvocacyChampioning consumer rights and accountable government
Mechanism
About LobbyingHow 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.
Milestones
Checkpoints and the expected timing for each step
- 1
Champions and vehicle strategy aligned
0–30 daysCoalition agrees on the must-pass path and the core provisions that cannot be weakened.
- 2
Committee movement secured
1–3 monthsA hearing, markup, or reporting step is scheduled and supported by partner outreach.
- 3
Bill text defended through negotiation
During legislative windowKey language survives amendments without shifting to “summary-only” access.
- 4
Implementation plan and oversight set
Post-passageGuidance and accountability steps are tracked until patients receive full data access in practice.