Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff
Plain English summary 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”. Th...
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| Format: | Article |
| Language: | English |
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BMC
2021-06-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-021-00281-2 |
| _version_ | 1818670445447086080 |
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| author | C. Atkin B. Crosby K. Dunn G. Price E. Marston C. Crawford M. O’Hara C. Morgan M. Levermore S. Gallier S. Modhwadia J. Attwood S. Perks A. K. Denniston G. Gkoutos R. Dormer A. Rosser A. Ignatowicz H. Fanning E. Sapey On behalf of the PIONEER Data Hub |
| author_facet | C. Atkin B. Crosby K. Dunn G. Price E. Marston C. Crawford M. O’Hara C. Morgan M. Levermore S. Gallier S. Modhwadia J. Attwood S. Perks A. K. Denniston G. Gkoutos R. Dormer A. Rosser A. Ignatowicz H. Fanning E. Sapey On behalf of the PIONEER Data Hub |
| author_sort | C. Atkin |
| collection | DOAJ |
| description | Plain English summary 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. |
| first_indexed | 2024-12-17T07:08:13Z |
| format | Article |
| id | doaj.art-ab4290aaba124a14ab3375c81a337385 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-12-17T07:08:13Z |
| publishDate | 2021-06-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-ab4290aaba124a14ab3375c81a3373852022-12-21T21:59:06ZengBMCResearch Involvement and Engagement2056-75292021-06-017111310.1186/s40900-021-00281-2Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staffC. Atkin0B. Crosby1K. Dunn2G. Price3E. Marston4C. Crawford5M. O’Hara6C. Morgan7M. Levermore8S. Gallier9S. Modhwadia10J. Attwood11S. Perks12A. K. Denniston13G. Gkoutos14R. Dormer15A. Rosser16A. Ignatowicz17H. Fanning18E. Sapey19On behalf of the PIONEER Data Hub20PIONEER Hub in Acute Care, Institute of Inflammation and Ageing, University Hospital Birmingham NHS Foundation Trust, University of BirminghamPIONEER HDR-UK Data Hub in Acute Care, Institute of Inflammation and Ageing, University Hospital Birmingham NHS Foundation Trust, University of BirminghamHDR-UK Midlands Physical Site, University Hospital Birmingham NHS Foundation Trust, University of BirminghamPatient Involvement and Engagement Lead, PIONEERResearch Support Services, University of BirminghamResearch and Development, University Hospital Birmingham NHS Foundation Trust, University of BirminghamUniversity Hospital Birmingham NHS Foundation Trust, University of BirminghamPublic authorMedical Devices Technology International Limited (MDTi)Technical Director, PIONEER HDR-UK Data Hub in Acute Care, Institute of Inflammation and Ageing, University Hospital Birmingham NHS Foundation Trust, University of BirminghamPIONEER HDR-UK Data Hub in Acute Care, University Hospital Birmingham NHS Foundation Trust, University of BirminghamInformatics, University Hospital Birmingham NHS Foundation Trust, University of BirminghamInformatics, University Hospital Birmingham NHS Foundation Trust, University of BirminghamDirector of INSIGHT - the Health Data Research Hub for Eye Health, University Hospitals Birmingham NHS Foundation TrustAlan Turing Institute, HDR-UK Associated Researcher, Institute of Cancer and Genomic Sciences, University of BirminghamInsignia Medical Systems LimitedWest Midlands Ambulance Service Foundation TrustInstitute of Applied Health Research, University of BirminghamResearch and Development, University Hospital Birmingham NHS Foundation Trust, University of BirminghamPIONEER, HDR-UK Health Data Research Hub in Acute Care, Birmingham Acute Care Research Group, Institute of Inflammation and Ageing, University of BirminghamPIONEER Health Data Research Hub, University of BirminghamPlain English summary 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.https://doi.org/10.1186/s40900-021-00281-2Data sharingSecondary data useNational Data opt-outAnonymised healthcare dataCommercial |
| spellingShingle | C. Atkin B. Crosby K. Dunn G. Price E. Marston C. Crawford M. O’Hara C. Morgan M. Levermore S. Gallier S. Modhwadia J. Attwood S. Perks A. K. Denniston G. Gkoutos R. Dormer A. Rosser A. Ignatowicz H. Fanning E. Sapey On behalf of the PIONEER Data Hub Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff Research Involvement and Engagement Data sharing Secondary data use National Data opt-out Anonymised healthcare data Commercial |
| title | Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff |
| title_full | Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff |
| title_fullStr | Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff |
| title_full_unstemmed | Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff |
| title_short | Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff |
| title_sort | perceptions of anonymised data use and awareness of the nhs data opt out amongst patients carers and healthcare staff |
| topic | Data sharing Secondary data use National Data opt-out Anonymised healthcare data Commercial |
| url | https://doi.org/10.1186/s40900-021-00281-2 |
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