Patient experience with family history tool: analysis of patients' experience sharing their family health history through patient-computer dialogue in a patient portal

Abstract

Objective: The collection and use of a family health history are important for assessing the patient's risk of disease, but history taking is often impeded by practical barriers in the office. Provision for patient-computer dialogue, linked with the electronic health record, may enable patients to contribute their history while bypassing these barriers. We sought to assess the patient experience using such a tool.

Materials and methods: We linked the family history module of a computer-based medical history to the patient portal of a large academic health system. The interview consisted of 39 primary questions with a predetermined high test-retest reliability. Patients' results were structured and summarized, and available within their electronic health record. Patients optionally completed a survey about their experience. We inductively analyzed free-text responses collected between 2014 and 2016.

Results: Among 97 781 patient portal users, 9562 patients accessed and 4223 patients completed the family medical history interview. Of these patients, 1451 completed our survey. Main themes that were identified included (1) patient empowerment, (2) anticipated value, (3) validity concerns, (4) privacy concerns, and (5) reflections on patient-computer dialogue. Patients also provided suggestions for the improvement of future family history tools.

Discussion: Patients providing their family health information is an example of collaborative electronic work with clinicians and was seen as valuable by those who participated. Concerns related to contextual information and uncertainty need to be addressed.

Conclusions: Patient-computer dialogue to collect family medical history empowered patients and added perceived value and efficiency to the patient experience of care.

Keywords: ambulatory care information systems; consumer health informatics; medical history taking; patient portals.

Figure 1.

Screenshot of family history interview, with standard response categories.

Figure 2.

Screenshot of summarized results, viewable by the patient and the clinician. Data remain in structured fields but summarized in narrative form for ease of review.

Figure 3.

Screenshot of clinician view of the electronic medical record with link to the summarized results.