By NextBestFitOpt-out of national record sharing
Patients can opt out of sharing.
Choice for patients.
Review ledgerHow this path connects
Concrete changes if chosen
What would actually have to change in law, agencies, payment rules, or systems.
- Create an opt-out of national record sharing
Effects
Each effect has its own page: the evidence, the case that it is or isn't a real cost, and whom it affects.
What it fixes
- Health privacy
Allowing patients to opt out of sharing health information gives them a choice and builds trust.
What it creates or worsens
- Leaves less complete or useful data
Patient opt-outs leave gaps in shared health data. Higher opt-out rates in some groups can bias research.
Who's affected
Who gains
- People with ongoing or specialist care needs
- Health privacy: Widely shared sensitive health information can expose them to harm.
- People needing mental health care
- Health privacy: Widely shared sensitive health information can expose them to harm.
- Pregnant and postpartum people and infants
- Health privacy: Widely shared sensitive health information can expose them to harm.
- Immigrants and mixed-status families
- Health privacy: Widely shared sensitive health information can expose them to harm.
Who loses
- Health data brokers
- Health privacy: They benefit from health information shared for marketing.
- Medical researchers and research institutions
- Leaves less complete or useful data: Patient opt-outs leave gaps in shared health data. Higher opt-out rates in some groups can bias research.
Where it has been tried
- UK NHS: Between 31 May and 30 June 2021, England recorded 1,339,862 additional national data opt-outs, increasing the opt-out share of people registered with GP practices from 2.77% to 4.97%.Sources: BJGP Open (2024)