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Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff.
Atkin, C; Crosby, B; Dunn, K; Price, G; Marston, E; Crawford, C; O'Hara, M; Morgan, C; Levermore, M; Gallier, S; Modhwadia, S; Attwood, J; Perks, S; Denniston, A K; Gkoutos, G; Dormer, R; Rosser, A; Ignatowicz, A; Fanning, H; Sapey, E.
Afiliación
  • Atkin C; PIONEER Hub in Acute Care, Institute of Inflammation and Ageing, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Crosby B; PIONEER HDR-UK Data Hub in Acute Care, Institute of Inflammation and Ageing, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Dunn K; HDR-UK Midlands Physical Site, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Price G; Patient Involvement and Engagement Lead, PIONEER, London, UK.
  • Marston E; Research Support Services, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK.
  • Crawford C; Research and Development, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • O'Hara M; University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Morgan C; Public author, B15 2GW, Birmingham, UK.
  • Levermore M; Medical Devices Technology International Limited (MDTi), The KaCe Building, Victoria Passage, Wolverhampton, West Midlands, WV1 4LG, UK.
  • Gallier S; Health, Education and Life Sciences, Birmingham City University, Birmingham, West Midlands, UK.
  • Modhwadia S; Technical Director, PIONEER HDR-UK Data Hub in Acute Care, Institute of Inflammation and Ageing, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Attwood J; PIONEER HDR-UK Data Hub in Acute Care, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Perks S; Informatics, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Denniston AK; Informatics, University Hospital Birmingham NHS Foundation Trust, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Gkoutos G; Director of INSIGHT - the Health Data Research Hub for Eye Health, University Hospitals Birmingham NHS Foundation Trust, Edgbaston, Birmingham, B15 2GW, UK.
  • Dormer R; Centre for Regulatory Science and Innovation, Birmingham Health Partners, Birmingham, B15 2GW, UK.
  • Rosser A; NIHR Biomedical Research Centre (Moorfields Eye Hospital NHS Foundation Trust and University College London), Birmingham, UK.
  • Ignatowicz A; Alan Turing Institute, HDR-UK Associated Researcher, Institute of Cancer and Genomic Sciences, University of Birmingham, Edgbaston, Birmingham, B15 2GW, UK.
  • Fanning H; Insignia Medical Systems Limited, Paterson House, Hatch Warren Lane, Basingstoke, Hampshire, RG22 4RA, UK.
  • Sapey E; West Midlands Ambulance Service Foundation Trust, Millennium Point, Waterfront Business Park, Waterfront Way, Brierley Hill, West Midlands, DY5 1LX, UK.
Res Involv Engagem ; 7(1): 40, 2021 Jun 14.
Article en En | MEDLINE | ID: mdl-34127076
Health data from routine care can be pseudonymised (with a link remaining to the patient but identifying features removed) or anonymised (with identifying features removed and the link to the patient severed) and used for research and health planning; termed "secondary use". The National Health Service (NHS) is a single publicly-funded health service for the United Kingdom (UK). The NHS supports secondary data use with a National Data opt-out system. The potential benefits of data secondary use are clear but concerns have been raised. Although the Data Opt-Out is publicised, it is unclear how much public awareness there is of this scheme. We report a patient and publicly created and delivered series of activities including > 350 people; with young adults, patients, NHS staff and the public; to assess concerns, knowledge and acceptance of data sharing.Perceptions of and support for secondary health data use varied depending on who was asked (by age, gender) and their 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) was low, even among NHS staff. The main concerns of sharing health data included onward data use, the potential for discrimination and exploitation and commercial gain from data use with no benefit to patients. Despite this, most participants agreed with health data sharing with NHS, academic and commercial health-based entities. Agreed, co-created themes to increase the acceptability of health data secondary use included 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.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Tipo de estudio: Qualitative_research Idioma: En Revista: Res Involv Engagem Año: 2021 Tipo del documento: Article Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Tipo de estudio: Qualitative_research Idioma: En Revista: Res Involv Engagem Año: 2021 Tipo del documento: Article Pais de publicación: Reino Unido