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Access to implanted-device data
Access to implanted-device data
Grassroots

Industry Pressure & Collaboration

Engage with device manufacturers directly to encourage voluntary action.

Engage with device manufacturers directly to encourage voluntary action. Sometimes avoiding regulation motivates industry to self-regulate – for example, if faced with a law, they might preemptively roll out patient data portals on their own terms. Convince them it’s in their PR interest and possibly business interest (patients prefer companies that empower them). Work via trade groups like AdvaMed to develop best practices.

Why this works

  • If even a couple of major manufacturers voluntarily start offering comprehensive patient data access, it sets a standard and shows it’s feasible.
  • This also undercuts arguments that it’s too hard or dangerous.
  • It could make the legislative push easier (“look, Medtronic is already doing it, this law just ensures everyone does”).
  • Also, collaboration means manufacturers could help design patient-friendly formats (as opposed to a mandate that they might implement in a clunky way out of spite).

League of Women Voters

Advocacy
lwv.org

Empowering voters and defending democracy

The League of Women Voters, established in 1920, is a civic nonprofit that encourages informed and active participation in government. Originally formed to help women exercise their new right to vote, the League is nonpartisan and works on expanding voting rights, improving elections, and educating voters. The LWV registers and turns out voters, fights voter suppression through advocacy and litigation (e.g., as plaintiffs in voting rights cases), and has supported reforms like independent redistricting and voting by mail:.

Mechanism

About Grassroots

How League of Women Voters uses funding

  1. Recruit a coalition that can engage manufacturers with both pressure and constructive implementation asks.
  2. Define what “comprehensive patient data access” means in practice and publish expectations.
  3. Convene manufacturers and trade groups to adopt best practices and voluntary timelines.
  4. Track which manufacturers expand access and use that evidence to undercut “too hard” arguments.
  5. Convert momentum into durable change by keeping the legislative and regulatory lanes moving.
View full partner profile

Milestones

Checkpoints and the expected timing for each step

  1. 1

    Engagement targets and standards defined

    0–30 days

    Partners agree on the “full access” baseline and the first manufacturers to approach.

  2. 2

    Best-practice framework published

    1–3 months

    A public standard clarifies what counts as meaningful access and what does not.

  3. 3

    Early voluntary access wins documented

    Ongoing

    Specific manufacturers expand access in ways patients can use in practice.

  4. 4

    Voluntary progress aligned to mandate

    Ongoing

    Industry steps support, rather than delay, the legislative and regulatory pathways.

Risks, trade-offs & sources

Updates

No updates yet.

Updates will appear here as the strategy progresses.

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