Raise public and professional awareness to create a groundswell of demand for device data access.
Build sustained communications and professional advocacy that turns a niche, technical issue into a clear patient-rights expectation. Elevate patient stories, run targeted campaigns, and recruit allied organizations and medical voices to publicly support full access. Use decision windows (committee steps, guidance moments, interoperability updates) to convert awareness into concrete policy movement.
Why this works
- Public pressure can accelerate policy.
- For example, if many patients start formally requesting their device data and complaining when they can’t get it (maybe even filing complaints with HHS under the idea that once data is in an EHR, not getting it violates info-blocking rules), that could push action.
- Highlighting it as a rights issue or even a civil rights/ disability rights issue (as Saxon said) can attract support from civil liberties groups or disability advocates, broadening the coalition.
Center for Food Safety
Tax-deductiblePublic-interest advocacy using litigation, policy, and grassroots action to protect health and the environment from industrial agriculture.
Mechanism
About MediaHow Center for Food Safety uses funding
- Define the objective and decision-maker and choose the next policy window to target.
- Develop a narrative with patient stories and practical explanations of what “patient-specific data” means.
- Distribute through press, social channels, and allied organizations with consistent messaging.
- Educate clinicians and seek medical-society support to reduce “patients can’t handle it” pushback.
- Monitor response and keep momentum through follow-up actions tied to hearings and agency moves.
Milestones
Checkpoints and the expected timing for each step
- 1
Narrative and assets developed
0–30 daysPartners publish a clear message toolkit and initial story pipeline.
- 2
Distribution and ally recruitment
1–3 monthsAllied groups and professional voices commit to amplifying the access ask.
- 3
Decision-window amplification
OngoingCoverage and outreach peak around committee steps and agency actions.
- 4
Follow-through and iteration
OngoingUpdates document what changed and refine the campaign based on results.