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

OBJECTIVES: 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. STUDY DESIGN: Randomized controlled pilot intervention. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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

OBJECTIVES: End-of-life planning, known as advance care planning (ACP), is associated with numerous positive outcomes, such as improved patient satisfaction with care and improved patient quality of life in terminal illness. However, patient-provider ACP conversations are rarely performed or documented due to a number of barriers, including time required, perceived lack of skill, and a limited number of resources. Use of tethered personal health records (PHRs) may help streamline ACP conversations and documentations for outpatient workflows. Our objective was to develop an ACP-PHR framework that would be for use in a primary care, outpatient setting. STUDY DESIGN: Qualitative content analysis of focus groups and cognitive interviews (participatory design). METHODS: A novel PHR-ACP tool was developed and tested using data and feedback collected from 4 patient focus groups (n = 13), 1 provider focus group (n = 4), and cognitive interviews (n = 22). RESULTS: Patient focus groups helped develop a focused, 4-question PHR communication tool. Cognitive interviews revealed that, while patients felt framework content and workflow were generally intuitive, minor changes to content and workflow would optimize the framework. CONCLUSIONS: A focused framework for electronic ACP communication using a patient portal tethered to the PHR was developed. This framework may provide an efficient way to have ACP conversations in busy outpatient settings.