Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff.

ABSTRACT:

Background

England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research.

Methods

A patient and public engagement program, co-created and including patient and public workshops, questionnaires and

SUBMITTER: Atkin C 

PROVIDER: S-EPMC8201435 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature