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Grünloh, ChristianeORCID iD iconorcid.org/0000-0003-2319-3186
Publications (10 of 10) Show all publications
Grünloh, C. (2018). Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records. (Doctoral dissertation). KTH Royal Institute of Technology
Open this publication in new window or tab >>Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
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.

Place, publisher, year, edition, pages
KTH Royal Institute of Technology, 2018
Series
TRITA-EECS-AVL ; 2018:72
National Category
Human Computer Interaction
Research subject
Technology and Health; Information and Communication Technology
Identifiers
urn:nbn:se:kth:diva-235848 (URN)978-91-7729-971-4 (ISBN)
Public defence
2018-11-02, F3, Lindstedtsvägen 26, Stockholm, 13:00 (English)
Opponent
Supervisors
Note

QC 20181008

Available from: 2018-10-08 Created: 2018-10-08 Last updated: 2018-10-11Bibliographically approved
Moll, J., Rexhepi, H., Cajander, A., Grünloh, C., Huvila, I., Hägglund, M., . . . Ahlfeldt, R.-M. (2018). Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden. Journal of Medical Internet Research, 20(11), Article ID e278.
Open this publication in new window or tab >>Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden
Show others...
2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 11, article id e278Article in journal (Refereed) Published
Abstract [en]

Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally. Objective: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system. Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents. Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen. Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

Place, publisher, year, edition, pages
JMIR PUBLICATIONS, INC, 2018
Keywords
eHealth, medical records, national survey, patients, patient-accessible electronic health records, patient portal, personal health records
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:kth:diva-239807 (URN)10.2196/jmir.9492 (DOI)000450280900001 ()30389647 (PubMedID)2-s2.0-85056037728 (Scopus ID)
Note

QC 20190107

Available from: 2019-01-07 Created: 2019-01-07 Last updated: 2019-01-07Bibliographically approved
Grünloh, C. (2018). Using technological frames as an analytic tool in value sensitive design. Ethics and Information Technology
Open this publication in new window or tab >>Using technological frames as an analytic tool in value sensitive design
2018 (English)In: Ethics and Information Technology, ISSN 1388-1957, E-ISSN 1572-8439Article in journal (Refereed) Published
Abstract [en]

This article proposes the use of technological frames (TF) as an analytical tool to support the investigations within value sensitive design. TF can help to identify values that are consistent or conflicting within and between stakeholders, which is exemplified with a case of patient accessible electronic health records in Sweden. The article concludes that TF can help to identify values, which may then help to understand and address possible concerns in the design process.

Place, publisher, year, edition, pages
Springer Netherlands, 2018
Keywords
Value sensitive design, Technological frames, eHealth, Patient empowerment, Patient accessible electronic health records
National Category
Human Computer Interaction
Research subject
Human-computer Interaction; Technology and Health
Identifiers
urn:nbn:se:kth:diva-231547 (URN)10.1007/s10676-018-9459-3 (DOI)
Note

QC 20180629

Available from: 2018-06-29 Created: 2018-06-29 Last updated: 2018-10-08Bibliographically approved
Grünloh, C., Myreteg, G., Cajander, Å. & Rexhepi, H. (2018). “Why Do They Need to Check Me?” Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study. Journal of Medical Internet Research, 20(1), Article ID e11.
Open this publication in new window or tab >>“Why Do They Need to Check Me?” Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study
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
Keywords
patient accessible electronic health records, medical records, personal health records, eHealth services for patients, patient portal, physicians, patient empowerment, patient participation, doctor-patient relationship
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:kth:diva-221213 (URN)10.2196/jmir.8444 (DOI)000422942900010 ()8871 (PubMedID)2-s2.0-85041078505 (Scopus ID)
Note

QC 20180116

Available from: 2018-01-16 Created: 2018-01-16 Last updated: 2018-10-08Bibliographically approved
Cajander, A., Grünloh, C., Lind, T. & Scandurra, I. (2016). Designing eHealth Services for Patients and Relatives: Critical Incidents and Lessons to Learn. In: PROCEEDINGS OF THE NORDICHI '16: THE 9TH NORDIC CONFERENCE ON HUMAN-COMPUTER INTERACTION - GAME CHANGING DESIGN. Paper presented at 9th Nordic Conference on Human-Computer Interaction (NordiCHI), OCT 23-27, 2016, Chalmers Univ Technol, Dept of Appl Informat Technol, Gothenburg, SWEDEN. Association for Computing Machinery (ACM)
Open this publication in new window or tab >>Designing eHealth Services for Patients and Relatives: Critical Incidents and Lessons to Learn
2016 (English)In: PROCEEDINGS OF THE NORDICHI '16: THE 9TH NORDIC CONFERENCE ON HUMAN-COMPUTER INTERACTION - GAME CHANGING DESIGN, Association for Computing Machinery (ACM), 2016Conference paper, Published paper (Refereed)
Abstract [en]

The number of eHealth services for patients and relatives is rapidly increasing as many countries are launching such services as a means to manage an ageing population, to increase efficiency in healthcare, and to empower patients. However, design and deployment of eHealth services for patients is challenging due to the complex setting and the multitude of affected stakeholders, which in turn make the task of eliciting and managing the needs and requirements equally challenging. Hence, this workshop(1) aims to make use of critical incident analysis as a method for collecting and jointly reflecting on practices, assumptions, and experiences in relation to the design, deployment, and use of eHealth services for patients and relatives. The goal of the workshop is to engage in joint reflection, and to find potential ways forward in relation to critical incidents as well as supporting the shaping and reshaping of eHealth design and development. This full day workshop invites researchers and practitioners to apply/provide their critical reflection in order to derive changed practices and theories about practice. We also especially invite the patients' perspective as this is crucial to achieve successful eHealth services. This workshop provides a venue for challenging the process of eHealth service design and development and is built around a concept of active participation, where the workshop participants will analyse and discuss the critical incidents together.

Place, publisher, year, edition, pages
Association for Computing Machinery (ACM), 2016
Keywords
Design, development, eHealth, patients, relatives, critical incidents, stakeholders, reflective practice
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:kth:diva-199819 (URN)10.1145/2971485.2987670 (DOI)000390298600130 ()2-s2.0-84997173267 (Scopus ID)978-1-4503-4763-1 (ISBN)
Conference
9th Nordic Conference on Human-Computer Interaction (NordiCHI), OCT 23-27, 2016, Chalmers Univ Technol, Dept of Appl Informat Technol, Gothenburg, SWEDEN
Note

QC 20170116

Available from: 2017-01-16 Created: 2017-01-16 Last updated: 2017-01-16Bibliographically approved
Grünloh, C., Cajander, Å. & Myreteg, G. (2016). "The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden. Journal of Medical Internet Research, 18(6), 470-483
Open this publication in new window or tab >>"The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden
2016 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 18, no 6, p. 470-483Article in journal (Refereed) 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.

Place, publisher, year, edition, pages
Toronto: JMIR Publications Inc., 2016
Keywords
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:nbn:se:kth:diva-185804 (URN)10.2196/jmir.5705 (DOI)000382312400037 ()27349531 (PubMedID)2-s2.0-84977587367 (Scopus ID)
Note

QC 20160428

Available from: 2016-04-28 Created: 2016-04-27 Last updated: 2018-10-08Bibliographically approved
Grünloh, C. (2016). To Share or Not to Share?: Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information. (Licentiate dissertation). Stockholm: KTH Royal Institute of Technology
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. p. 53
Series
TRITA-CSC-A, ISSN 1653-5723 ; 2016:09
Keywords
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: 2018-01-10Bibliographically approved
Grünloh, C., Walldius, Å., Hartmann, G. & Gulliksen, J. (2015). Using Online Reviews as Narratives to Evoke Designer’s Empathy. In: 15th IFIP TC 13 International Conference on Human–Computer Interaction: . Paper presented at 15th IFIP TC.13 International Conference on Human-Computer Interaction - INTERACT 2015, Bamberg, Germany. September, 14-18, 2015. (pp. 298-315). Springer Berlin/Heidelberg
Open this publication in new window or tab >>Using Online Reviews as Narratives to Evoke Designer’s Empathy
2015 (English)In: 15th IFIP TC 13 International Conference on Human–Computer Interaction, Springer Berlin/Heidelberg, 2015, p. 298-315Conference paper, Published paper (Refereed)
Abstract [en]

Gathering health-related data is quite easy, but visualizing them in a meaningful way remains challenging, especially when the application domain is very complex. Research suggests that empathy can facilitate the design process and that narratives can help to create an empathic encounter between designers and the prospective users. We conducted an exploratory quasi-experiment in order to explore whether narratives in form of online reviews are able to evoke designer’s empathy when developing an online platform for a direct-to-consumer genetic testing service. The results suggest that the narratives can help designers to engage with and take the perspective of the prospective user, who is then represented in more detail. Lacking narratives from real people leaves the designers to their own imagination, which can lead to the use of rather abstract stereotypes that do not enable an understanding of the user, but affect the subsequent design decisions.

Place, publisher, year, edition, pages
Springer Berlin/Heidelberg, 2015
Series
Lecture Notes in Computer Science, ISSN 0302-9743 ; 9296
Keywords
Human-Computer Interaction, Empathy, Direct-to-Consumer, Genetic Testing, Health and Wellbeing
National Category
Human Computer Interaction
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-165412 (URN)10.1007/978-3-319-22701-6_22 (DOI)000363681800022 ()2-s2.0-84945544187 (Scopus ID)
Conference
15th IFIP TC.13 International Conference on Human-Computer Interaction - INTERACT 2015, Bamberg, Germany. September, 14-18, 2015.
Note

QC 20151124

Available from: 2015-04-29 Created: 2015-04-27 Last updated: 2018-01-11Bibliographically approved
Cajander, Å., Grünloh, C. & Rexhepi, H. (2015). Worlds Apart - Doctors’ Technological Frames and Online Medical Records. In: Schriften aus der Fakultät Wirtschaftsinformatik und Angewandte Informatik der Otto-Friedrich-Universität Bamberg (22): . Paper presented at The 15th IFIP TC.13 International Conference on Human-Computer Interaction - INTERACT, 14 to 18 September 2015, Bamberg, Germany (pp. 357-369). University of Bamberg Press
Open this publication in new window or tab >>Worlds Apart - Doctors’ Technological Frames and Online Medical Records
2015 (English)In: Schriften aus der Fakultät Wirtschaftsinformatik und Angewandte Informatik der Otto-Friedrich-Universität Bamberg (22), University of Bamberg Press , 2015, p. 357-369Conference paper, Published paper (Refereed)
Abstract [en]

The ability of individuals to access and use their online medical records serves as one of the cornerstones of national efforts to increase patient empowerment and improve health outcomes. However, the launch of online medical records in Uppsala County, Sweden, has been criticized by the medical profession and the local doctors’ union. The aim of this paper is therefore to present the results from an exploratory study where interviews with two oncologists are analysed and discussed based on the theory of Technological Frames and Patient Empowerment. The results indicate that medical doctors have different assumptions and perspectives that affect their use of technology and how they view patient empowerment in everyday clinical work.

Place, publisher, year, edition, pages
University of Bamberg Press, 2015
Keywords
Patient Empowerment, eHealth, healthcare information systems
National Category
Human Computer Interaction Information Systems
Research subject
Humanities and Social sciences
Identifiers
urn:nbn:se:kth:diva-175467 (URN)978-3-86309-352-5 (ISBN)978-3-86309-353-2 (ISBN)
Conference
The 15th IFIP TC.13 International Conference on Human-Computer Interaction - INTERACT, 14 to 18 September 2015, Bamberg, Germany
Note

QC 20151019

Available from: 2015-08-25 Created: 2015-10-15 Last updated: 2018-01-11Bibliographically approved
Moll, J., Rexhepi, H., Cajander, Å., Grünloh, C., Huvila, I., Hägglund, M., . . . Åhlfeldt, R.-M. Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in Sweden. Journal of Medical Internet Research
Open this publication in new window or tab >>Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in Sweden
Show others...
(English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871Article in journal (Refereed) In press
Abstract [en]

Background: Internationally, there is a movement toward providing patients online access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens the possibility to access their medical information online. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.

Objectives: The objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.

Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chisquare tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.

Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.

Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

Keywords
Patient accessible electronic health records, medical records, personal health records, eHealth, patient portal, patients, national survey
National Category
Human Computer Interaction
Research subject
Technology and Health; Information and Communication Technology
Identifiers
urn:nbn:se:kth:diva-235844 (URN)
Note

QC 20181008

Available from: 2018-10-08 Created: 2018-10-08 Last updated: 2018-10-08Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-2319-3186

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