Utilizing a Prototype Patient-Controlled Electronic Health Record in Germany: Qualitative Analysis of User-Reported Perceptions and Perspectives

Abstract

BackgroundPersonal electronic health records (PHR) are considered instrumental in improving health care 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 many years. Nevertheless, nationwide implementation of a PHR is still pending in Germany despite legal regulations provided by the eHealth Act passed in 2015. Within the information technology for patient-oriented care project funded by the Federal Ministry of Education and Research (2012-2017), a Web-based personal electronic health record prototype (PEPA) was developed enabling patient-controlled information exchange across different care settings. Gastrointestinal cancer patients and general practitioners 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.ObjectiveThis paper aims to outline findings of the posttrial 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.MethodsData were collected through semistructured 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.ResultsUsers 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 health care organizations or the provider-patient relationship.ConclusionsDigitalization in German health care will continue to bring change, both organizational and in the physician-patient relationship. Patients endorse and expect a nationwide PEP...

German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192)

“…Currently, there are significant differences between countries in terms of the political will to implement eHealth, available infrastructure, and actual use of these possibilities. Here, Germany and Italy offer contrasting examples within Europe, with Germany being less advanced than Italy in eHealth implementation efforts (Poss-Doering et al, 2018;Thiel et al, 2019). Italian eHealth initiatives have mainly been in the areas of improving access to health services and availability of patients' clinical histories, innovating primary care, and redesigning the healthcare services network through Telemedicine (Domenichiello, 2015).…”

Functionalities and Issues in the Implementation of Personal Health Records: Systematic Review

“…In the tethered or integrated PHR, patients may connect their PHR to the health care provider system [ 25 , 62 , 72 , 76 , 86 , 102 , 104 ]. With this integration, health information is automatically transferred to the PHR [ 33 , 39 , 62 , 109 , 110 ]. This can reduce data entry load [ 33 , 96 ], improve data accuracy [ 62 , 96 ], prevent medical errors [ 38 ], reduce the health information recall [ 35 ], and contribute to users’ better perceptions about the system’s usefulness [ 111 ].…”

Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany

“…The undertaken research was part of a study dealing with the development and pilot-implementation of a PHR within the project "Information Technology for patient-oriented health care in the Rhine-Neckar region" (INFOPAT) [8,[14][15][16][17]20]. The overall aim of INFOPAT was to establish structures and processes that enable integrated and cross-sectoral care of chronically ill people.…”

“…Despite the growing relevance of PHRs and caregivers' access to them, there is so far no consensus on the clear role for caregivers in the use of a PHR. Therefore, one objective of the underlying research project "Information Technology for patient-oriented health care in the Rhine-Neckar region (INFOPAT)" was not only to develop a patient-centered PHR by involving patients themselves but also to illuminate the caregivers' attitudes and opinions regarding this subject [8,[12][13][14][15][16][17].…”