Unintended consequences of patient online access to health records: a qualitative study in UK primary care

Talk Code: 
2A.8
Presenter: 
Jeremy Horwood
Twitter: 
Co-authors: 
Andrew Turner, Rebecca Morris, Lorraine McDonagh, Fiona Hamilton, Sarah Blake, Michelle Farr, Fiona Stevenson, Jon Banks, Helen Atherton, Dylan Rakhra, Gemma Lasseter, Gene Feder, Emma Hyde, John Powell, Sue Ziebland
Author institutions: 
Centre for AcaUniversity of Bristol, University of Oxford, University of Manchester, University of Warwick, University College London

Problem

Health systems around the world are seeking to harness digital tools to promote patient autonomy and increase the efficiency of care. One example of this policy in England is online patient access to full medical records in primary care. Since April 2019, all NHS England patients have had the right to access their full medical record prospectively, and full record access has been the “default position” since April 2020.

Approach

To identify and understand the unintended consequences of online patient access their medical records, qualitative interviews were conducted with 10 general practices in South West and North West England.

Findings

Online access generated unintended consequences that negatively impacted patients’ understanding of their health care, for example patients discovering surprising information or information that was difficult to interpret. Online access impacted GPs’ documentation practices, such as when GPs pre-emptively attempted to minimise potential misunderstandings to aid patient understanding of their health care, in other cases, negatively impacting the quality of the records and patient safety when GPs avoided documenting their speculations or concerns. Contrary to assumptions that practice workload would be reduced, online access introduced extra work, such as managing and monitoring access and taking measures to prevent possible harm to patients.

Consequences

The unintended consequences described by both staff and patients show that to achieve the intended consequences set out in NHS policy additional work is necessary to prepare records for sharing and prepare patients about what to expect. It is crucial that practices are adequately supported and resourced to manage the unintended consequences of online access now that it is the default position.

Submitted by: 
Jeremy Horwood
Funding acknowledgement: 
The DECODE study is funded by National Institute for Health Research (NIHR) School for Primary Care Research and supported by NIHR Applied Research Collaboration West (NIHR ARC West). This work was also supported by the National Institute for Health Research (NIHR) Greater Manchester Patient Safety Translational Research Centre (award number: PSTRC-2016-003). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care