Patient and caregiver perceptions of electronic health records interoperability in the NHS and its impact on care quality: a focus group study
Authors: Li Edmond , Lounsbury Olivia , Clarke Jonathan , Ashrafian Hutan , Darzi Ara , Neves Ana Luisa 
Published: December 2024

Background

The proliferation of electronic health records (EHR) in health systems of many high-income countries has ushered in profound changes to how clinical information is used, stored, and disseminated. For patients, being able to easily access and share their health information electronically through interoperable EHRs can often impact safety and their experience when seeking care across healthcare providers. While extensive research exists examining how EHRs affected workflow and technical challenges such as limited interoperability, much of it was done from the viewpoint of healthcare staff rather than from patients themselves. This leaves a critical knowledge gap in our evidence base to inform better implementation of health information technologies which needs addressing.

Aims and objectives

This study aimed to explore how patients with chronic conditions or polypharmacy and their caregivers perceive the current state of EHR interoperability, identify instances where it was associated with negative health outcomes, and elucidate patient-driven recommendations to address concerns raised.

Methods

A total of 18 patients and caregivers participated in five online focus groups between May-July 2022. Thematic analysis was performed to generate codes and derive higher-order themes.

Results

Participants highlighted that EHR interoperability in the NHS does not meet patient needs and expectations. While patients’ understanding of the concept of EHR interoperability was mixed, most were able to describe how the inability to seamlessly share health information within EHR has negatively impacted care. Limited interoperability contributed to inaccurate medical records, perpetuated existing incorrect information, impaired clinical decision-making, and often required patients to resort to using workarounds. Patients also voiced ideas for potential solutions for consideration. These included a move towards a one-centralised system approach, strengthening data security measures to augment other efforts to increase interoperability, prioritising health information technology training for NHS staff, and involving more allied health professionals and patients themselves in the EHR data curation process.

Conclusion

Our study contributes to the existing body of literature by providing the perspectives of patients and carers most likely to encounter interoperability challenges and therefore those most ideally positioned to propose potential solutions. As highlighted by patients, researchers and policymakers should consider social, educational, and organisational solutions, in addition to technical solutions.

Public interest Summary

Lack of interoperability (i.e., the ability to share a patient’s health information electronically between healthcare providers) can affect the quality of care received. However, much of the existing research was done from the viewpoint of healthcare staff rather than from patients themselves. This study explored the views of patients regarding what they feel interoperability in the NHS is currently like, how they think it affects their care, and what they think can be done to improve it. Patients reported interoperability to often be poor. It caused inconvenience both to themselves and their healthcare provider, and negatively impacted their experience getting care overall. Patient suggestions for improvement included centralising and reducing the number of existing systems, having more training for healthcare staff, and supporting patients and other healthcare staff in managing their health data.