A qualitative exploration of patients’ needs and expectations regarding online access to their primary care record

Conference:

SAPC ASM 2020 - cancelled due to pandemic

Talk Code:

N.11

Presenter:

Brian McMillan

Twitter:

@brwmcmillan

Co-authors:

Gail Davidge, Lindsay Brown, Moira Lyons, Helen Atherton, Rebecca Hays, Freda Mold, Rebecca Morris, Caroline Sanders

Author institutions:

University of Manchester, University of Warwick, University of Surrey

Problem

Primary care records have traditionally primarily served the needs and demands of clinicians rather than those of the patient. GP contracts in England state practices must now promote and offer registered patients online access to their primary care record, and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access to their health record.

Approach

A community-based qualitative study of a purposive sample of 54 individuals who were either eligible for the NHS Health Check, living with more than one long term condition, or caring for someone. We explored what patients and carers want from online access to their electronic primary care health record, how they would like to interact with their record, and what support they may need. Focus groups and semi-structured interviews with individuals from a variety of socio-demographic backgrounds were digitally audio recorded, transcribed, and analysed thematically.

Findings

Participants’ needs and expectations regarding online access to their primary care health records centred around issues relating to: 1) Privacy and security (e.g. the ability to set different levels of access to different individuals), 2) Integration (with other health records, health services, and external systems), 3) Self-management (e.g. access to tailored health information or support groups, 4) Other features and functions (such as the ability to write into one’s own notes, plain English/other language functions, or full retrospective access), and 5) Support from practices (such as ‘tech surgeries’ or demonstration iPads). In addition to these expressed needs and expectations, the data also illustrated important issues relating to personal experiences of using online records access, perceived benefits, and concerns/barriers regarding online access.

Consequences

Future development of primary care patient online records access systems should take patients and carers’ expressed needs and expectations into account. Service providers should work alongside patients and carers to help develop features and functions that address these needs. For example, patients could be given more control over the level of access they can grant to specific individuals, plain English/other language functions could be incorporated, and the online primary care record could be better integrated with other systems. Patients and carers report requiring additional support with accessing their primary care record and in interpreting the information they contain, which raises questions for policymakers regarding how such additional support will be funded.

Submitted by:

Brian McMillan

Funding acknowledgement:

This work was funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project reference 429). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.