Testing of a tethered personal health record framework for early end-of-life discussions

The process of planning for end-of life decisions, also known as advance care planning (ACP), is associated with numerous positive outcomes, including improved patient satisfaction with care and improved patient quality of life in terminal illness. In this study, we sought to test a novel personal health record (PHR)-delivered ACP framework through a small-scale randomized trial of usual care practices versus PHR-delivered ACP.

Randomized controlled pilot intervention.

A novel PHR-ACP tool was tested using data and feedback collected in a randomized controlled pilot intervention (n = 50). Participants in the control group received standard care for ACP conversations while participants randomized to the intervention group received a novel ACP framework through the electronic health record.

The pilot study testing the ACP framework found that its use resulted in improved ACP documentation rates (P = .001) and quality (P = .007) compared with usual care.

Tethered PHR use as an initial ACP communication tool can improve outpatient documentation rates and quality. Future studies obtaining patient feedback on a revised framework and testing in a larger setting are needed to determine reproducibility of findings.