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

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. Qualitative content analysis of focus groups and cognitive interviews (participatory design). 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). 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. 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.