Patient and caregiver perceptions of electronic health records interoperability in the NHS and its impact on care quality: A focus group study

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.