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

Abstract Introduction Public awareness and support for secondary health data use may vary by health care experience and participant demographics. England provides an example of a centralised “opt out” for secondary use of anonymised health data. We explored the awareness, support for and concerns about anonymised healthcare data secondary use and the NHS data opt-out system amongst patients, carers, healthcare staff and the public within the West Midlands. Methods A patient and public engagement program was completed, including patient and public workshops, questionnaires regarding anonymised health data use and feedback discussion groups. Results Central concerns for health data use included unauthorised data re-use, the potential for discrimination and profit generation without patient benefit. Key priorities were projects leading to patient benefit, oversight by the NHS as a trusted organisation, increasing awareness of the NHS data opt-out, and ongoing public/patient involvement. Questionnaires showed 31.8% were aware of the NHS data opt-out. 93.8% were happy for their data to be used for NHS research, 84.8% for academic research and 68.4% by health companies. However, opinion varied with demographics (age, gender or public, patient, NHS staff and volunteers). Agreed action points for health data use were education regarding the National Data Opt-Out, public involvement in data requests, NHS oversight, and transparency. Conclusion Use of anonymised healthcare data for secondary purposes is acceptable to most patients, carers and healthcare workers. However, awareness is limited, and initiatives to publicise potential benefits are needed amongst patients, healthcare staff and the public. 1) What is already known? The secondary use of health data without explicit consent has been widely debated. The potential benefits are clear but public groups have raised concerns, especially when anonymised data is shared with commercial entities. 2) What does this paper add? Perceptions of and support for secondary health data use vary by demographic (age, gender) and experience of health services (Staff member, patient, member of the public). Knowledge of schemes to limit secondary data use (such as the UK National Data Op-Out) are low, even among NHS staff. Patient and public agreed themes to increase the acceptability of health data secondary use include education about ‘Opt-out’ schemes, health service oversight of data use (as the most trusted partner), public and patient involvement in data sharing decisions and public transparency. This framework may increase the acceptability of health data use. Strengths Mixed methods approach including workshops and questionnaires Includes children aged 13 and over, which is important given they can ‘opt-out’ of health data use at this age using the UK’s National Data Opt-Out. Includes demographics of the diverse participants, rarely collected in most online surveys Includes NHS Staff members, patients and current non-patients, but people with experience of NHS services Limitations West Midlands based and not national Limited numbers (300+ sample) preventing analysis of sub groups. Participant selection included people with experience of NHS hospital services, and therefore may not be generalisable