Utilizing a Prototype Patient-Controlled Electronic Health Record in Germany: A Qualitative Analysis of User-Reported Perceptions and Perspectives (Preprint)
Authors: Poss-Doering Regina , Kunz Aline , Pohlmann Sabrina , Hofmann Helene , Kiel Marion , Winkler Eva C. , Ose Dominik , Szecsenyi Joachim 
Published: March 2018

BACKGROUND

Electronic personal health records (PHR) are considered instrumental in improving healthcare quality and efficiency, enhancing communication between all parties involved and strengthening the patient’s role. Technical architectures, data privacy and applicability issues have been discussed for a number of years. Nevertheless, nationwide implementation of a PHR is still pending in Germany despite legal regulations provided by the e-Health Act passed in 2015. Within the INFOPAT project (information technology for patient-oriented care) which was funded (2012-2017) by the Federal Ministry of Education and Research, the prototype Web-based personal electronic health record (PEPA) was developed which enables patient-controlled information exchange across different care settings. Gastrointestinal cancer patients and general practitioners (GP) utilized PEPA during a 3-month trial period. Both patients and physicians authorized by them could view PEPA content online and upload or download files.

OBJECTIVE

This paper aims to outline findings of the post-trial qualitative study carried out to evaluate user-reported experiences, perceptions, and perspectives, focusing on their interpretation of PEPA beyond technical usability and views on a future nationwide implementation.

METHODS

Data were collected through semi-structured guide-based interviews with 11 patients and 3 physicians (n=14). Participants were asked to share experiences, views of perceived implications, and perspectives towards nationwide implementation. Further data were generated through free-text fields in a subsequent study-specific patient questionnaire and researcher’s notes. Data were pseudonymized, audiotaped, and transcribed verbatim. Content analysis was performed through the Framework Analysis approach. All qualitative data were systemized by using MAXQDA Analytics PRO 12 (Rel.12.3.1). Additionally, participant characteristics were analyzed descriptively using IBM SPSS Statistics Version 24.

RESULTS

Users interpreted PEPA as a central medium containing digital chronological health-related documentation that simplifies information sharing across care settings. While patients consider the implementation of PEPA in Germany in the near future, physicians are more hesitant. Both groups believe in PEPA’s concept, but share awareness of concerns about data privacy and older or impaired people’s abilities to manage online records. Patients perceive benefits for involvement in treatment processes and continuity of care but worry about financing and the implementation of functionally reduced versions. Physicians consider integration into primary systems critical for interoperability but anticipate technical challenges, as well as resistance from older patients and colleagues. They omit clear positioning regarding PEPA’s potential incremental value for healthcare organizations or the provider-patient relationship.

CONCLUSIONS

Digitalization in German healthcare will continue to bring change, both organizational and in the physician-patient relationship. Patients endorse and expect a nationwide PEPA implementation, anticipating various benefits. Decision makers and providers need to contribute to closing modernization gaps by committing to new concepts and by invigorating transformed roles.