Patient and public experience and views on digital systems for sharing records for health and care preferences at the end of life

Abstract Objective To explore patient and public experiences of and priorities for the use of shared patient health records for advance care planning. Methods A convergent-parallel mixed method design was used. An online national survey of patients and the public gathered data on experiences and views of sharing health and advance care planning information to support care at the end of life. Descriptive statistics were used to analyse rating scale responses (5 or 10-point scale) and thematic analysis applied to free-text responses. Results Responses (N=1728) included participants in 103 UK counties, including people with a terminal condition (n=33), long-term condition (n=442), who provide or have provided care to a person with a long-term or terminal illness (n=229), and who identified as healthy and interested in planning for the future (n=1024). Confidence that recorded care preferences would be accessed when needed was low for carers (median= 2, IQR 1-4) and moderate for patients (median=3, IQR 1-4). Four themes derived from free-text responses included: i) Experience of sharing health information; ii) Preparation, communication and understanding; iii) Concerns, unknowns and assurance seeking, and; iv) Preserving Dignity and Respect: Understanding individual contexts. Conclusions Whilst recognising the potential of sharing health records, respondents and in particular carers, doubted that patient information would be accessed by relevant health professionals when needed. Future research is required to explore whether patient and carer access to the record influences their confidence in the accuracy of the content and the likelihood of care being delivered in line with their wishes. What is already known on this topic Digital systems can support documentation and sharing of health information, wishes and preferences for the end of life. What this study adds Patients and carers perceive the documentation of advance care plans as a burdensome and complex process, that can lead to confusion about the purpose of documentation. Respondents expressed doubts about the accuracy of documented information, uncertainty about whether health professionals could access their records when needed and concerns that documented wishes and preferences would be ignored. How this study might affect research, practice or policy Patient and public views must be considered in the design and implementation of digital systems. In particular, efforts should be made to build confidence and clarify the expectations of patients and members of the public around the documentation of their wishes and preferences for care alongside the subsequent sharing and use of this information.