No lawful national vehicle for GP data for research, five years after GPDPR collapsed

The General Practice Data for Planning and Research programme has been paused since 2021 and never restarted. National research access to primary-care records relies on partial workarounds: the GPES Data for Consented Research collection (2026-28) covers only consented cohorts; CPRD covers a subset of practices. Missing is the policy instrument itself: a re-consulted national GP data collection with SDE-only access and a settled opt-out regime. The new Health Data Research Service is the plausible operator, but no one has issued the settlement.

Primary-care data is the UK's most valuable research asset; its absence hollows out the HDRS's core promise, trials recruitment and prevention research. A second botched launch would entrench distrust; millions registered opt-outs after care.data and GPDPR.

A new data collection direction for GP data-for-research with SDE-only dissemination, co-designed with RCGP, the BMA and the National Data Guardian, coupled with reform of the national data opt-out and a funded public deliberation programme. DHSC and HDRS could deliver it; a foundation could fund the deliberative work.

// State-led: Instrument: DHSC data collection direction with SDE-only dissemination and opt-out reform; foundations can fund deliberation but cannot issue the direction.

Primary-care data is the UK's most valuable research asset, but the settlement stays paused five years on with only partial workarounds and no dated trigger forcing action now.