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

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.