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"The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden
KTH, Skolan för datavetenskap och kommunikation (CSC), Medieteknik och interaktionsdesign, 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 (engelsk)Inngår i: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 18, nr 6, s. 470-483Artikkel i tidsskrift (Fagfellevurdert) Published
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.

sted, utgiver, år, opplag, sider
Toronto: JMIR Publications Inc. , 2016. Vol. 18, nr 6, s. 470-483
Emneord [en]
Patient accessible electronic health records, medical records, e-health services for patients, patient portal, technological frame, physicians
HSV kategori
Forskningsprogram
Teknik och hälsa
Identifikatorer
URN: urn:nbn:se:kth:diva-185804DOI: 10.2196/jmir.5705ISI: 000382312400037PubMedID: 27349531Scopus ID: 2-s2.0-84977587367OAI: oai:DiVA.org:kth-185804DiVA, id: diva2:924205
Merknad

QC 20160428

Tilgjengelig fra: 2016-04-28 Laget: 2016-04-27 Sist oppdatert: 2018-10-08bibliografisk kontrollert
Inngår i avhandling
1. To Share or Not to Share?: Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information
Åpne denne publikasjonen i ny fane eller vindu >>To Share or Not to Share?: Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information
2016 (engelsk)Licentiatavhandling, med artikler (Annet vitenskapelig)
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.

sted, utgiver, år, opplag, sider
Stockholm: KTH Royal Institute of Technology, 2016. s. 53
Serie
TRITA-CSC-A, ISSN 1653-5723 ; 2016:09
Emneord
eHealth, electronic health records, technological frames, expectations, patients, health care professionals
HSV kategori
Forskningsprogram
Människa-datorinteraktion; Teknik och hälsa
Identifikatorer
urn:nbn:se:kth:diva-185803 (URN)978-91-7595-965-8 (ISBN)
Presentation
2016-06-02, 1440, Lindstedtsvägen 3, Stockholm, 10:00 (engelsk)
Opponent
Veileder
Tilgjengelig fra: 2016-04-28 Laget: 2016-04-27 Sist oppdatert: 2018-01-10bibliografisk kontrollert
2. Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
Åpne denne publikasjonen i ny fane eller vindu >>Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
2018 (engelsk)Doktoravhandling, med artikler (Annet vitenskapelig)
Abstract [en]

Healthcare systems worldwide face organisational and financial challenges due to increasing number of people with chronic conditions, increasing costs, and an ageing population. eHealth services have the potential to address some of these challenges, for example, by supporting patients who are engaged in self-care, improving quality of care, and reducing medical costs.

In 2012, Region Uppsala in Sweden launched an eHealth service that enabled patients to access their electronic health records through the Internet. The launch of the service was accompanied by strong criticism from healthcare professionals (HCPs) and was heavily debated in the media. Patients on the other hand were very positive towards the service.

Albeit promising, the potential of Patient Accessible Electronic Health Records (PAEHRs) cannot be realised if HCPs still have reservations towards the service and their concerns are not fully understood. The purpose of this research is therefore to enhance our understanding of how physicians view PAEHR in relation to both their work environment and the level of patient participation. Furthermore, the aim is to shed light on whether their concerns related to patients’ well-being have materialised in practice and how patients view and make use of the service. Finally, this thesis identifies implicated human values and value tensions related to PAEHR.

To enhance our understanding of the physicians’ perspective, semi-structured interviews with 12 physicians in Uppsala were thematically analysed. A national patient survey was conducted to investigate patients’ use of and their experiences with PAEHR. Furthermore, empirical and conceptual investigations were carried out to identify human values and value tensions.

The results of this research show that the physicians’ assumptions and views of PAEHR and its consequences for patients were different from the views and actual experiences of patients using the PAEHR system. The physicians were mainly concerned about potential increase in their workload and that it could be harmful for patients to access their Electronic Health Record (EHR), for example, as it might evoke anxiety or worry. The vast majority of patients appreciated timely access to their results, felt more involved in their care, and read their records to become more involved. The investigation of human values associated with PAEHR identified values such as Ownership & Property, Professional Autonomy, Responsibility, Human Well-Being, Accountability & Transparency, and Trust. Furthermore, value tensions were identified that may occur between direct and indirect stakeholders (here: patients and physicians), or are related to an interpretation of PAEHR.

This thesis contributes to current research on eHealth in Human-Computer Interaction (HCI) by instigating a critical discussion of values associated with eHealth technologies that might be perceived as conflicting given a stakeholder’s framing of the technology. For example, tensions that emerge between values that prioritise placing the responsibility on a physician for their patients versus a value system that prioritises patient autonomy. The findings of this thesis suggest that while policymakers and government agencies adhere to a system of values that place a premium on patient empowerment, paternalistic tendencies are still present among physicians. However, an eHealth service like PAEHR is an important first step towards patient participation. The results of this thesis suggest that the support of patient participation in their own care through PAEHR outweighs the potential harm.

sted, utgiver, år, opplag, sider
KTH Royal Institute of Technology, 2018
Serie
TRITA-EECS-AVL ; 2018:72
HSV kategori
Forskningsprogram
Teknik och hälsa; Informations- och kommunikationsteknik
Identifikatorer
urn:nbn:se:kth:diva-235848 (URN)978-91-7729-971-4 (ISBN)
Disputas
2018-11-02, F3, Lindstedtsvägen 26, Stockholm, 13:00 (engelsk)
Opponent
Veileder
Merknad

QC 20181008

Tilgjengelig fra: 2018-10-08 Laget: 2018-10-08 Sist oppdatert: 2018-10-11bibliografisk kontrollert

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