Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.

ABSTRACT:

Objectives

UK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences.

Design/setting/interventions/outcomes

Pre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data.

Participants

Open to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition.

Results

Most (76%) supported identifiable data sharing for dir

SUBMITTER: Jones LA 

PROVIDER: S-EPMC9058801 | biostudies-literature | 2022 Apr

REPOSITORIES: biostudies-literature