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"why do they need to check me?" patient participation through ehealth and the doctor-patient relationship: Qualitative study
School of Computer Science and Communication, KTH Royal Institute of Technology, Stockholm, Sweden / Institute of Informatics, Technische Hochschule Köln, University of Applied Sciences, Gummersbach, Germany.
Department of Business Studies, Uppsala University, Uppsala, Sweden.
Department of Information Technology, Uppsala University, Uppsala, Sweden.
University of Skövde, School of Informatics. University of Skövde, The Informatics Research Centre. (Informationssystem, Information Systems)ORCID iD: 0000-0001-8957-9853
2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 1, article id e11Article in journal (Refereed) Published
Abstract [en]

Background: Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients. Objective: This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians' constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement. Methods: A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed. Results: Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient's role, lack of skills (technical or regarding medical jargon), motives to read, and patients' characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care. Conclusions: Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of "power" in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of "monitoring the doctor" but to make sense of the situation.

Place, publisher, year, edition, pages
Journal of Medical Internet Research , 2018. Vol. 20, no 1, article id e11
Keywords [en]
Doctor-Patient Relationship, Ehealth Services For Patients, Medical Records, Patient Accessible Electronic Health Records, Patient Empowerment, Patient Participation, Patient Portal, Personal Health Records, Physicians, adult, article, decision making, electronic health record, electronic patient record, empowerment, genetic transcription, human, learning, monitoring, qualitative research, responsibility, semi structured interview, skill, telehealth, thematic analysis
National Category
Information Systems, Social aspects Human Aspects of ICT Information Systems Computer Sciences Computer Systems
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-14750DOI: 10.2196/jmir.8444ISI: 000422942900010PubMedID: 29335237Scopus ID: 2-s2.0-85041078505OAI: oai:DiVA.org:his-14750DiVA, id: diva2:1183393
Available from: 2018-02-16 Created: 2018-02-16 Last updated: 2018-04-26Bibliographically approved

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