Healthcare professionals’ perspectives on the secondary use of health records to improve quality and safety of care: a qualitative study in England
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Published version
Author(s)
Type
Journal Article
Abstract
Background: Healthcare professionals (HCP) are often patients’ first point of contact in what concerns the communication of the purposes, benefits, and risks of sharing electronic health records (EHR) for non-direct care purposes. Their engagement is fundamental to ensure patients’ buy-in and a successful implementation of healthcare data sharing schemes. However, their views on this subject are seldom evaluated.
Objective: To explore HCP’ perspectives on the secondary uses of healthcare data in England. Specifically, we aimed to assess a) their knowledge on its purposes and b) the main concerns about data sharing processes.
Methods: A total of 30 interviews were conducted between the 27th March and 7th April 2017 using an online interview platform, and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East, Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by two independent reviewers, using the framework analysis method to identify emerging themes.
Results: HCP were knowledgeable about the possible secondary uses of data and highlighted its importance for 1) patient profiling and tailored care, 2) research, 3) quality assurance, 4) public health, and 5) service delivery planning purposes. Main concerns towards data sharing included 1) data accuracy, 2) patients’ willingness to share their records, 3) challenges on obtaining free and informed consent, 4) data security, 5) lack of adequacy / understanding of current policies, and 6) potential patient exposure and exploitation.
Conclusions: These results suggest a high level of HCP understanding about the purposes of data sharing for secondary purposes, however, some concerns still remain. A better understanding of HCP’ knowledge and concerns could inform national communication policies, and improve tailoring in order to maximise efficiency and improve patients’ buy-in.
Objective: To explore HCP’ perspectives on the secondary uses of healthcare data in England. Specifically, we aimed to assess a) their knowledge on its purposes and b) the main concerns about data sharing processes.
Methods: A total of 30 interviews were conducted between the 27th March and 7th April 2017 using an online interview platform, and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East, Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by two independent reviewers, using the framework analysis method to identify emerging themes.
Results: HCP were knowledgeable about the possible secondary uses of data and highlighted its importance for 1) patient profiling and tailored care, 2) research, 3) quality assurance, 4) public health, and 5) service delivery planning purposes. Main concerns towards data sharing included 1) data accuracy, 2) patients’ willingness to share their records, 3) challenges on obtaining free and informed consent, 4) data security, 5) lack of adequacy / understanding of current policies, and 6) potential patient exposure and exploitation.
Conclusions: These results suggest a high level of HCP understanding about the purposes of data sharing for secondary purposes, however, some concerns still remain. A better understanding of HCP’ knowledge and concerns could inform national communication policies, and improve tailoring in order to maximise efficiency and improve patients’ buy-in.
Date Issued
2019-09-26
Date Acceptance
2019-07-28
Citation
Journal of Medical Internet Research, 2019, 21 (9)
ISSN
1438-8871
Publisher
JMIR Publications
Journal / Book Title
Journal of Medical Internet Research
Volume
21
Issue
9
Copyright Statement
©Ana Luísa Neves, Dilkushi Poovendran, Lisa Freise, Saira Ghafur, Kelsey Flott, Ara Darzi, Erik K Mayer. Originally publishedin the Journal of Medical Internet Research (http://www.jmir.org), 23.09.2019 This is an open-access article distributed underthe terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricteduse, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical InternetResearch, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/,as well as this copyright and license information must be included.
Sponsor
Imperial College Healthcare NHS Trust- BRC Funding
National Institute for Health Research
National Institute of Health Research
Identifier
https://preprints.jmir.org/preprint/14135/accepted
Grant Number
RDB04
n/a
Subjects
Science & Technology
Life Sciences & Biomedicine
Health Care Sciences & Services
Medical Informatics
electronic health records
information technology
health policy
safety culture
PUBLIC-HEALTH
BIG DATA
ANALYTICS
ATTITUDES
PATIENT
FUTURE
electronic health records
health policy
information technology
safety culture
08 Information and Computing Sciences
11 Medical and Health Sciences
17 Psychology and Cognitive Sciences
Medical Informatics
Publication Status
Published
Article Number
ARTN e14135
Date Publish Online
2019-07-29