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“The Record is our Work Tool!” - Physicians’ Framing of a Patient Portal in Sweden
KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-2319-3186
Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..ORCID iD: 0000-0001-7472-2215
Örebro University Business School, Örebro, Sweden.ORCID iD: 0000-0003-1272-4068
2016 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, 5705Article in journal (Refereed) In press
Abstract [en]

Background: Uppsala County in Sweden launched an e-health patient portal named Journalen in 2012, which allows patients to access their medical records over the Internet. However, the launch of Journalen was critically debated in the media. The professionals were strongly skeptical and one reason was possible negative effects on their work environment. This study hence investigates the assumptions and perspectives of physicians in order to understand their framing of the patient portal in relation to their work environment.

Objective: The study uses the concept of Technological Frames to examine how physicians in different specialties make sense of the patient portal in relation to their work environment.

Methods: 12 semi-structured interviews were conducted with physicians from different specialties. Interviews were transcribed and translated. A theoretically informed thematic analysis was performed.

Results: The thematic analysis revealed four main themes: work tool, process, workload, and control. Physicians perceive medical records as their work tool, written for communication within healthcare only. Considering effects on work environment the physicians held a negative attitude and expected changes, which would affect their work processes in a negative way. Especially that patients might read their test results prior to the physician was seen as possibly harmful for patients and as an interference with their established work practices. They expected the occurrence of misunderstandings and needs for additional explanations, which would consequently increase their workload. Other perceptions were that the portal would increase controlling and monitoring of physicians, and increase or create a feeling of mistrust from patients. Regarding benefits for the patients most of the physicians believe there is only little value in the patient portal and that patients would mostly be worried and misunderstand the information provided.

Conclusions: Supported by the study we conclude: 1) The transfer of a paper-based healthcare process where patients read on paper, into a digital process challenges current work practices and has consequences for the work environment. Mostly this is explained by the changing positions between the physicians and the patient: the latter can drive the process, which reduces the physicians’ ability to guide the patient. 2) The physicians’ experiences were expressed as worries: patients would not understand the content of the record and become unnecessary anxious from misunderstandings. The concerns are to some extent based on a generalized view of patients, which might disregard those, who already actively participate in healthcare. This study hence reveals a need to provide physicians with information about the values for patients from using patient portals. 3) A change of work practices may be beneficial to increase patient participation, but such changes should preferably be designed and discussed with physicians. However, the strong resistance from the physicians made this challenging when launching Journalen.

Place, publisher, year, edition, pages
Toronto: JMIR Publications Inc. , 2016. 5705
Keyword [en]
Patient accessible electronic health records, medical records, e-health services for patients, patient portal, technological frame, physicians
National Category
Human Computer Interaction
Research subject
Technology and Health
Identifiers
URN: urn:nbn:se:kth:diva-185804DOI: 10.2196/jmir.5705OAI: oai:DiVA.org:kth-185804DiVA: diva2:924205
Note

QC 20160428

Available from: 2016-04-28 Created: 2016-04-27 Last updated: 2016-04-28Bibliographically approved
In thesis
1. To Share or Not to Share?: Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information
Open this publication in new window or tab >>To Share or Not to Share?: Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information
2016 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis investigates expectations of and experiences with eHealth services that allow users access to their health information. Although eHealth services are endorsed by many politicians and patients, they are met with strong resistance by health care professionals. Lacking this support hinders the uptake of the full potential of the service, especially with relation to patient participation and empowerment.

This research investigates the frames of reference that are constructed by stakeholders in relation to eHealth services, such as direct-to-consumer genetic testing and electronic health records. The results are based on empirical data gathered during an experiment with media informatics students in Germany, and from interviews with physicians in Uppsala, Sweden.

The eHealth services in question were framed by the participants of the conducted studies as potentially harmful for its users. The negative expectations were based mainly on a generalized view of patients as not sufficiently knowledgable and hence unable to understand the health information provided by the service. The participants in the reported studies (physicians and students in their role as designers) felt a responsibility to prevent any potential harm for the users of the eHealth service. Due to the framing based on assumed negative consequences for a supposedly vulnerable user group, the participants preferred to advocate against access rather than for patient empowerment and participation. Accessing health information was associated as holding little value for the users.

This research enhances the understanding of the elements underlying this skepticism and concern. It shows that a specific view of patients and/or prospective users of an eHealth system can result in incongruent technological frames and value attribution. In line with participatory and value-sensitive design approaches as well as the aim to increase technology acceptance, patients and health care professionals should not only be included in the design process but also engage in joint activities in order to enable reframing.

Abstract [sv]

Avhandlingen undersöker förväntningar på och erfarenheter av e-hälsotjänster som ger användare tillgång till sin egen hälsoinformation. Även om e-hälsotjänster har fått stöd av många politiker och patienter har de mötts av starkt motstånd från sjukvårdspersonal. Utan deras stöd blir det svårt att realisera tjänstens fulla potential, särskilt när det gäller patientens delaktighet och egenmakt.Forskningen undersöker de referensramar som konstrueras av intressenter för att förstå e-hälsotjänster, till exempel genetisk testning direkt till konsument och elektroniska patientjournaler. Resultaten baseras dels på empiriska data som samlats in i ett experiment med studenter i Tyskland, dels på intervjuer med läkare i Uppsala.De undersökta e-hälsotjänsterna upplevdes (were framed) av studiernas deltagare som potentiellt skadliga för användarna. De negativa förväntningarna baserades huvudsakligen på en allmän syn på patienter som inte tillräckligt kunniga och därmed oförmögna att förstå tjänstens hälsoinformation. Deltagarna i de rapporterade studierna (läkare och studenter i rollen som formgivare) kände ansvar för att förhindra eventuella skador för e-hälsotjänstens användare. Beroende på de förväntat negativa följderna för de förmodat utsatta patientgrupperna föredrog undersökningens deltagare att ta ställning emot patienternas åtkomst snarare än att ta ställning för deras deltagande och ökade egenmakt. Att ha tillgång till hälsoinformation bedömdes vara av lågt värde för användarna.Forskningen ökar förståelsen av de element som ligger till grund för deltagarnas upplevda skepsis och oro. Den visar att en specifik bild av patienter och/eller framtida användare av ett e-hälsosystemet kan leda till inkongruenta tekniska referensramar och värdebedömningar. I linje med inriktningarna deltagande design och värdebaserade design samt målet att öka teknisk acceptans, bör patienter och hälso- och sjukvårdspersonal inte bara ingå i designprocessen, utan också delta i gemensamma aktiviteter för att möjliggöra omtolkningar av sina tekniska referens- ramar.

Place, publisher, year, edition, pages
Stockholm: KTH Royal Institute of Technology, 2016. 53 p.
Series
TRITA-CSC-A, ISSN 1653-5723 ; 2016:09
Keyword
eHealth, electronic health records, technological frames, expectations, patients, health care professionals
National Category
Human Computer Interaction
Research subject
Human-computer Interaction; Technology and Health
Identifiers
urn:nbn:se:kth:diva-185803 (URN)978-91-7595-965-8 (ISBN)
Presentation
2016-06-02, 1440, Lindstedtsvägen 3, Stockholm, 10:00 (English)
Opponent
Supervisors
Available from: 2016-04-28 Created: 2016-04-27 Last updated: 2016-04-28Bibliographically approved

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