Using tethered-personal health records for pre-liminary end-of-life discussions with medical providers: Preferences of African American vs. Caucasian primary care patients

Abstract

Background: End-of-life discussions rarely begin early in a patient’s disease course due to the time intensive nature of these conversations. Neglect of such conversations often results in poor understanding about a patient’s care preferences. Electronic health record (EHR)-tethered Personal Health Records (PHRs) are being used more widely in chronic disease management and may provide a time efficient vehicle to embark on early end-of-life conversations, also known as Advance Care Planning (ACP). Objective: To investigate cultural differences among elderly patients in willingness to engage in electronic ACP communication using EHR-tethered PHRs. Methods: Qualitative exploratory study. Four focus groups (2 Caucasian Groups and 2 African-American Groups) were conducted, with purposive sampling of patients over 50 years old to represent culturally diverse views on ACP and use of the EHR. Focus groups lasted 60 minutes and were led by 2 consistent co-facilitators. Participants were identified on clinical schedules of an outpatient Midwestern primary care practice over a 30 day period. Results: Caucasian participants responded more enthusiastically to PHR-based ACP than African-American participants. Discomfort for PHR-based ACP communication stemmed from: lack of computer access; uneasiness with technology; potential loss of human interaction; lack of opportunities for family-centered decision making; and fear of misrepresentation. Discussion: PHR-based ACP tools may improve delivery, but need individualization for cultural needs of patients. Further investigation is needed to develop tools specific for African-American patients and to reproduce findings in a larger study. Conclusions: In order to ensure applicability to African-American patients, PHR-based ACP tools must incorporate strategies such as: face-to-face interaction; follow-up communication from trusted medical providers; and family engagement.