By NextBestFitPhase 1: Enactment & build · Step 1.14
Set data governance & privacy rules
Months 0–18 · UHA Chief Privacy Officer; HHS OCRDiscuss this step
How other countries handled this same piece of implementation, what happened, and what it means for this plan.
Side by side
| Country | Approach | Result | Lesson for this plan |
|---|---|---|---|
| This plan (U.S.) | A single payer holds every American's claims history. Strict rules decide who can see it, for what purpose, and how it is protected. | ||
| Denmark / Sweden | National registries linked by personal ID numbers; strict research governance. | World-class population research. | Linked data is valuable when governance is trusted. |
| United Kingdom | care.data (2014) and the GP data extraction plan (2021) were paused after public backlash over consent. | Millions opted out. | Transparency and opt-outs for secondary data use are essential. |
Denmark / Sweden
- What they did
- National registries linked by personal ID numbers; strict research governance.
- What happened
- World-class population research.
- Lesson for this plan
- Linked data is valuable when governance is trusted.
United Kingdom
- What they did
- care.data (2014) and the GP data extraction plan (2021) were paused after public backlash over consent.
- What happened
- Millions opted out.
- Lesson for this plan
- Transparency and opt-outs for secondary data use are essential.
More precedent
- Nordic national health registries; Taiwan's NHI research database.