Incorporating patient perspectives into the personal health record: implications for care and caring

Electronic personal health records (ePHRs) can potentially maximize access and coordination of health information and improve patient/clinician collaboration, patient self-management, and health outcomes. Most ePHRs are designed by vendors, physicians, and other proprietary partners and have neglected the patient perspective. This study sought to incorporate patient feedback into an existing ePHR system. Patients participated in a semistructured interview after one to two weeks of using an ePHR. Interviews addressed strengths and weaknesses of the PHR. Two iterations of interviews, referred to as Wave 1 and Wave 2, occurred sequentially. An iterative process of theme identification was used, and three theme categories (User, System Acceptance, and Technology) were identified in the two waves. Seven technology themes with 40 specific questions were identified and were rank ordered by importance and feasibility, and 20 suggestions were subsequently implemented into the ePHR. Thus, incorporating patient feedback on specific utilities and functionality into an existing ePHR is possible.