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Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study.
BMC Med Inform Decis Mak. 2015 Oct 14; 15:86.BM

Abstract

BACKGROUND

Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK.

METHODS

Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N = 5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N = 120). Qualitative data were analysed thematically.

RESULTS

In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision.

CONCLUSIONS

Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing.

Authors+Show Affiliations

NIHR CLAHRC Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, UK. Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.NIHR CLAHRC Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, UK.Department of Social and Environmental Health Research, London School of Hygiene and Tropical Medicine, London, UK.Department of Social and Environmental Health Research, London School of Hygiene and Tropical Medicine, London, UK. Department of Sociology, University of the Pacific, Stockton, CA, USA.Department of Primary Care & Public Health, Imperial College London, London, UK.NIHR CLAHRC Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, UK. d.bell@imperial.ac.uk.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

26466787

Citation

Papoutsi, Chrysanthi, et al. "Patient and Public Views About the Security and Privacy of Electronic Health Records (EHRs) in the UK: Results From a Mixed Methods Study." BMC Medical Informatics and Decision Making, vol. 15, 2015, p. 86.
Papoutsi C, Reed JE, Marston C, et al. Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study. BMC Med Inform Decis Mak. 2015;15:86.
Papoutsi, C., Reed, J. E., Marston, C., Lewis, R., Majeed, A., & Bell, D. (2015). Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study. BMC Medical Informatics and Decision Making, 15, 86. https://doi.org/10.1186/s12911-015-0202-2
Papoutsi C, et al. Patient and Public Views About the Security and Privacy of Electronic Health Records (EHRs) in the UK: Results From a Mixed Methods Study. BMC Med Inform Decis Mak. 2015 Oct 14;15:86. PubMed PMID: 26466787.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study. AU - Papoutsi,Chrysanthi, AU - Reed,Julie E, AU - Marston,Cicely, AU - Lewis,Ruth, AU - Majeed,Azeem, AU - Bell,Derek, Y1 - 2015/10/14/ PY - 2014/10/31/received PY - 2015/09/28/accepted PY - 2015/10/16/entrez PY - 2015/10/16/pubmed PY - 2016/5/6/medline SP - 86 EP - 86 JF - BMC medical informatics and decision making JO - BMC Med Inform Decis Mak VL - 15 N2 - BACKGROUND: Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK. METHODS: Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N = 5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N = 120). Qualitative data were analysed thematically. RESULTS: In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision. CONCLUSIONS: Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing. SN - 1472-6947 UR - https://www.unboundmedicine.com/medline/citation/26466787/Patient_and_public_views_about_the_security_and_privacy_of_Electronic_Health_Records__EHRs__in_the_UK:_results_from_a_mixed_methods_study_ L2 - https://bmcmedinformdecismak.biomedcentral.com/articles/10.1186/s12911-015-0202-2 DB - PRIME DP - Unbound Medicine ER -