Systems for electronic documentation and sharing of advance care planning preferences: a scoping review

Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework (https://osf.io/xnrg3). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches (n = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information (n = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients.