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Public attitudes towards disclosing personal and anonymous health-related data and information

Public attitudes towards disclosing personal and anonymous health-related data and information
Public attitudes towards disclosing personal and anonymous health-related data and information

Background/Aims: public perceptions of the acceptability of healthcare organisations, such as the NHS, sharing their data or information with other relevant entities may depend on various factors. This study aimed to fill gaps in the literature relating to this topic by investigating public perceptions of health record sharing with different entities, and how the anonymity (or lack thereof) of records and the terminology used may affect these attitudes. 

Methods: a survey was distributed to 2335 members of the public in England, sampled through YouGov's online panel. Respondents were randomly sorted into four groups and given a scenario about health record sharing. The scenarios differed between groups in terms of whether records were personal (non-anonymous) or anonymous, and whether the term 'data' or 'information' was used. Respondents were asked to rate the acceptability of sharing with different entities, including health and social care providers, insurance companies and local government. Differences between responses were analysed, with significance set at P < 0.01. 

Results: the majority (84%) of respondents indicated that they found it either acceptable or very acceptable for the NHS to share personal data and information with hospitals and GPs. Higher levels of acceptability were observed when the term 'information' rather than 'data' was used. However, over half of respondents found it either unacceptable or very unacceptable for the NHS to share such information with pharmaceutical companies for research purposes or with councils, whether these data were personal or anonymised. 

Conclusions: this study suggests that people are more willing to share personal data when they perceive there to be potential personal benefits. It also contradicts the commonly held assumption that people are more comfortable sharing records that have been anonymised. These findings could inform future public health initiatives.

GPs, Hospitals, Identifiable information, Local councils, NHS, Personal data
1358-0574
Yen, Dorothy Ai-wan
e181222b-eaed-4133-87f2-a1ad971a6f2c
Dorussen, Han
19411d6a-67a6-448b-8e3a-d431408e4967
Pickering, Steve
cb5f99e5-96a2-453e-92dd-6b66c139e166
Hansen, Martin
a6b18f95-b196-459e-b0ed-c15d4e078ae1
Scotto, Thomas
ed4dc8b3-9656-4f8a-89fe-298daed50fcf
Reifler, Jason
426301a1-f90b-470d-a076-04a9d716c491
Yen, Dorothy Ai-wan
e181222b-eaed-4133-87f2-a1ad971a6f2c
Dorussen, Han
19411d6a-67a6-448b-8e3a-d431408e4967
Pickering, Steve
cb5f99e5-96a2-453e-92dd-6b66c139e166
Hansen, Martin
a6b18f95-b196-459e-b0ed-c15d4e078ae1
Scotto, Thomas
ed4dc8b3-9656-4f8a-89fe-298daed50fcf
Reifler, Jason
426301a1-f90b-470d-a076-04a9d716c491

Yen, Dorothy Ai-wan, Dorussen, Han, Pickering, Steve, Hansen, Martin, Scotto, Thomas and Reifler, Jason (2025) Public attitudes towards disclosing personal and anonymous health-related data and information. British Journal of Healthcare Management, 31 (1). (doi:10.12968/bjhc.2024.0056).

Record type: Article

Abstract

Background/Aims: public perceptions of the acceptability of healthcare organisations, such as the NHS, sharing their data or information with other relevant entities may depend on various factors. This study aimed to fill gaps in the literature relating to this topic by investigating public perceptions of health record sharing with different entities, and how the anonymity (or lack thereof) of records and the terminology used may affect these attitudes. 

Methods: a survey was distributed to 2335 members of the public in England, sampled through YouGov's online panel. Respondents were randomly sorted into four groups and given a scenario about health record sharing. The scenarios differed between groups in terms of whether records were personal (non-anonymous) or anonymous, and whether the term 'data' or 'information' was used. Respondents were asked to rate the acceptability of sharing with different entities, including health and social care providers, insurance companies and local government. Differences between responses were analysed, with significance set at P < 0.01. 

Results: the majority (84%) of respondents indicated that they found it either acceptable or very acceptable for the NHS to share personal data and information with hospitals and GPs. Higher levels of acceptability were observed when the term 'information' rather than 'data' was used. However, over half of respondents found it either unacceptable or very unacceptable for the NHS to share such information with pharmaceutical companies for research purposes or with councils, whether these data were personal or anonymised. 

Conclusions: this study suggests that people are more willing to share personal data when they perceive there to be potential personal benefits. It also contradicts the commonly held assumption that people are more comfortable sharing records that have been anonymised. These findings could inform future public health initiatives.

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To share or not to share_accepted version - Accepted Manuscript
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More information

Accepted/In Press date: 3 July 2024
e-pub ahead of print date: 9 January 2025
Published date: 9 January 2025
Keywords: GPs, Hospitals, Identifiable information, Local councils, NHS, Personal data

Identifiers

Local EPrints ID: 499604
URI: http://eprints.soton.ac.uk/id/eprint/499604
ISSN: 1358-0574
PURE UUID: e68deeb0-813a-4dd2-a2aa-a5d50bc889bb
ORCID for Jason Reifler: ORCID iD orcid.org/0000-0002-1116-7346

Catalogue record

Date deposited: 27 Mar 2025 17:44
Last modified: 03 Sep 2025 04:01

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Contributors

Author: Dorothy Ai-wan Yen
Author: Han Dorussen
Author: Steve Pickering
Author: Martin Hansen
Author: Thomas Scotto
Author: Jason Reifler ORCID iD

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