The unintended consequences of giving patients online access to their health records

Giving patients online access to their GP health records has unintended consequences that can limit its usefulness, an ARC West and University of Bristol Centre for Academic Primary Care (CAPC) study published in the British Journal of General Practice (BJGP) has shown.

While online patient access to health records (online access, for short) is supposed to help patients, in some cases being able to view one’s health record can have negative consequences. This can include when patients discover surprising and distressing information or find their health information difficult to interpret. Online access also has unintended consequences for general practices, affecting how GPs write their notes and adding to administrative workloads.

In the UK, the NHS Long Term plan gave patients the right to access ‘digital first’ primary care by 2023-24. Although the roll-out of online record access has been delayed, from November 2022 users of the NHS app (or similar apps) should have full access to new additions to their record. In 2023 they should have access to summaries of what is already in their record.

Online access is important on a point of principle: the information rightly belongs to the patient and so should be accessible to them. More practically, online access is intended to help patients take greater control of their health, while making care more efficient and helping reduce general practice workload.

This study aimed to identify and understand the unintended consequences of online access so they can be managed effectively by policymakers and practitioners.

In 2019, the researchers interviewed 13 patients and 19 general practice staff across 10 general practices with experience of patient online access to health records, in South West and North West England.

This study reports real-world experiences of the consequences of online access. The team identified unintended consequences that impacted patient autonomy and GP documentation practices, and also increased workload from providing access while avoiding harm to patients.

It is crucial that general practices are adequately supported and resourced to manage the unintended consequences of online access now that it is the default position.

Dr Andrew Turner, NIHR ARC West and CAPC, a lead author of the study, said:

“This research shows that there can be unintended consequences for patients and for staff when health records serve different purposes. Giving patients online access to their health records can be of benefit to patients and is a sign of transparency in medicine, but it is important to share access in ways that maximise the positive benefits and minimise possible harms.”

Professor Jeremy Horwood, of ARC West and CAPC, and principal investigator of the study, said:

“Implementation of online record access is more complex than the intended consequences set out in NHS policy. To achieve intended consequences additional work is necessary to 1) prepare records for sharing and 2) prepare patients about what to expect from their records. It is vital that GP practices are adequately supported to be able to implement the roll out of patient access to medical records.”

Download the team’s mitigation guidance for clinicians and practice managers (PDF).

BJGP podcasts and videos

Professor Horwood has recorded a podcast and video explainer about the paper for the BJGP.