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. 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. ### Competing Interest Statement HA is the chief scientific officer of Pre-emptive Health and Medicine at Flagship Pioneering. AD is the executive chair of Pre-emptive Health and Medicine at Flagship Pioneering. All other authors do not have any competing interests. ### Funding Statement This work was supported by the Imperial College National Institute for Health Research (NIHR) Patient Safety Translational Research Centre (PSTRC), with infrastructure support from Imperial NIHR Biomedical Research Centre. ALN is additionally supported by the North West London National Institute for Health and Care Research Applied Research Collaboration (NWL NIHR ARC). JC is supported by the Wellcome Trust. The funders/sponsors have had no role in the development and drafting of this manuscript. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Imperial College Research Ethics Committee (ICREC) of Imperial College London gave ethical approval for this work (Reference No. 22IC7425). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data is available upon reasonable request to the corresponding author. * COREQ : Consolidated criteria for Reporting Qualitative research EHR : electronic health records GP : general practitioners HIE : health information exchange HIT : health information technologies JLV : Joint Legacy Viewer NHS : National Health Service PGHD : patient-generated health data PHR : personal health records