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Access to implanted-device data

Access to implanted-device data

7
Days left
33,721Votes
$16,361Raised
$41,840Sponsors

Implanted devices record your health, but you can’t see it

Implanted medical devices collect important health data, but many patients can’t directly access it. The goal is to guarantee that patients can request and receive the patient-specific data their device records. Winning means passing the Patient Device Data Access Act and setting a clear expectation that device makers must share this data with patients.

Why this matters now

Pacemakers, defibrillators (ICDs), insulin pumps, neurostimulators, and other implants can track heart rhythms, glucose levels, and device performance. That information can help a patient understand what’s happening in their body day to day.

Right now, patients may only see summaries during office visits, while fuller data flows to manufacturers or clinics. When people can’t see their own device data, they have less control and fewer options to ask informed questions or spot issues early.

What's blocking progress

Many device makers resist sharing full patient-specific data, citing intellectual property concerns and worries that patients could misread technical information. Lobbying pressure could weaken bills into “summary-only” access or add extra gatekeepers.

Strategies

Choose which strategies should receive funding this cycle.

Lobbying

Legislation (Primary Path)

Advocate for the swift passage of the Patient Device Data Access Act through Congress.

14,163 VOTES42% SHARE OF POOL
14,163 VOTES42% SHARE OF POOL
Your Votes
0
Litigation

Litigation (last resort path)

If progress stalls, consider legal action.

14,163 VOTES42% SHARE OF POOL
14,163 VOTES42% SHARE OF POOL
Your Votes
0
Lobbying

Regulatory Advocacy

Work with the FDA and ONC (Health IT) to use existing authority to encourage or require patient data access.

9,442 VOTES28% SHARE OF POOL
9,442 VOTES28% SHARE OF POOL
Your Votes
0
Grassroots

Industry Pressure & Collaboration

Engage with device manufacturers directly to encourage voluntary action.

6,070 VOTES18% SHARE OF POOL
6,070 VOTES18% SHARE OF POOL
Your Votes
0
Media

Patient & Public Advocacy Campaign

Raise public and professional awareness to create a groundswell of demand for device data access.

4,047 VOTES12% SHARE OF POOL
4,047 VOTES12% SHARE OF POOL
Your Votes
0

Community discussion

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Impact stories

Impact updates will appear here after the first cycle closes.

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