Giving patients an active role in managing a personal electronic health record is an innovative patient-centered approach, although existing restraints have to be recognized. To enhance user adoption and advance PEPAs potential, key user needs have to be addressed.

Cross-sectoral cancer care is complex and involves collaboration from health care professionals (HCPs) across multiple sectors. However, when health information exchange (HIE) is not adequate, it results in impeded coordination and continuity of care. A web-based personal electronic health record (PEPA) under patients' control, providing access to personal health data across sectors, is being developed. Aim of this study was to explore perceived benefits and concerns. Using a qualitative approach, 10 focus groups were performed collecting views of three prospective user groups: patients with colorectal cancer (n = 12), physicians (n = 17) and other HCPs (n = 16). Representatives from different health sectors across the Rhine-Neckar region (Germany) participated. Data were audio- and videotaped, transcribed verbatim and thematically analysed. Our study shows that patients and HCPs expected a PEPA to enhance cross-sectoral availability of information, cross-sectoral cooperation and facilitate data management. Quality of cancer care was expected to be improved. Concerns were expressed in terms of data protection and data security. Concepts like a PEPA offer the chance to support HIE and avoid gaps of information in cross-sectoral cancer care. This may lead to improvements in coordination and continuity of care. Issues concerning data security and protection have to be addressed.

BackgroundThe integration of new information and communication technologies (ICTs) is becoming increasingly important in reorganizing health care. Adapting ICTs as supportive tools to users' needs and daily practices is vital for adoption and use.ObjectiveIn order to develop a Web-based personal electronic health record (PEPA), we explored user requirements and needs with regard to desired information and functions.MethodsA qualitative study across health care sectors and health professions was conducted in a regional health care setting in Germany. Overall, 10 semistructured focus groups were performed, collecting views of 3 prospective user groups: patients with colorectal cancer (n=12) and representatives from patient support groups (n=2), physicians (n=17), and non-medical HCPs (n=16). Data were audio- and videotaped, transcribed verbatim, and thematically analyzed using qualitative content analysis.ResultsFor both patients and HCPs, it was central to have a tool representing the chronology of illness and its care processes, for example, patients wanted to track their long-term laboratory findings (eg, tumor markers). Designing health information in a patient accessible way was highlighted as important. Users wanted to have general and tumor-specific health information available in a PEPA. Functions such as filtering information and adding information by patients (eg, on their well-being or electronic communication with HCPs via email) were discussed.ConclusionsIn order to develop a patient/user centered tool that is tailored to user needs, it is essential to address their perspectives. A challenge for implementation will be how to design PEPA’s health data in a patient accessible way. Adequate patient support and technical advice for users have to be addressed.