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Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-2319-3186
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: urn:nbn:se:kth:diva-235848ISBN: 978-91-7729-971-4 (print)OAI: oai:DiVA.org:kth-235848DiVA, id: diva2:1253996
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
List of papers
1. Using technological frames as an analytic tool in value sensitive design
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
2. "The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden
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
3. “Why Do They Need to Check Me?” Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study
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
4. Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in Sweden
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
5. Electronic Health Records Are More Than a Work Tool: Conflicting Needs of Direct and Indirect Stakeholders
Open this publication in new window or tab >>Electronic Health Records Are More Than a Work Tool: Conflicting Needs of Direct and Indirect Stakeholders
2019 (English)Conference paper, Published paper (Refereed)
Abstract [en]

Stakeholder relationships can be complex and include conflicting needs and values, especially in a changing society. However, little is known about details of contradictory perspectives of stakeholders. More discussions are needed in HCI about complex human-centred systems development. In this paper we study the different perspectives of patients and physicians related to Patient Accessible Electronic Health Records (PAEHR) in Sweden. We used themes from interviews with physicians as a lens to analyse survey data from patients. The results show that the needs and wishes of patients conflict with the physicians’ preconceptions of patients’ needs. Moreover, the needs of patients stand in tension with the physicians’ work related preferences. Our paper highlights the necessity to consider the accuracy of stakeholders’ perspectives about other stakeholder groups. We also discuss the implications of the results in relation to design, methods and tools in HCI, and reorientation of work.

Place, publisher, year, edition, pages
ACM Publications, 2019
Keywords
patient accessible electronic health records, work environment, healthcare, user experience, patient portal, doctorpatient relationship
National Category
Human Computer Interaction
Research subject
Technology and Health; Information and Communication Technology
Identifiers
urn:nbn:se:kth:diva-235847 (URN)
Conference
ACM Conference on Human Factors in Computing Systems (CHI ’19)
Note

QC 20181008

Available from: 2018-10-08 Created: 2018-10-08 Last updated: 2018-10-08Bibliographically approved
6. Using Critical Incidents in Workshops to Inform eHealth Design
Open this publication in new window or tab >>Using Critical Incidents in Workshops to Inform eHealth Design
Show others...
2017 (English)In: Human-Computer Interaction - INTERACT 2017, Springer, 2017, Vol. 10513, p. 364-373Conference paper (Refereed)
Abstract [en]

Demands for technological solutions to address the variety of problems in healthcare have increased. The design of eHealth is challenging due to e.g. the complexity of the domain and the multitude of stakeholders involved. We describe a workshop method based on Critical Incidents that can be used to reflect on, and critically analyze, different experiences and practices in healthcare. We propose the workshop format, which was used during a conference and found very helpful by the participants to identify possible implications for eHealth design, that can be applied in future projects. This new format shows promise to evaluate eHealth designs, to learn from patients’ real stories and case studies through retrospective meta-analyses, and to inform design through joint reflection of understandings about users’ needs and issues for designers.

Place, publisher, year, edition, pages
Springer, 2017
Series
Lecture Notes in Computer Science (including subseries Lecture Notes in Artificial Intelligence and Lecture Notes in Bioinformatics), ISSN 0302-9743 ; 10513
Keywords
Development, eHealth, Critical incidents, Stakeholders, Reflective practice, Evaluation
National Category
Human Computer Interaction
Research subject
Human-computer Interaction; Information and Communication Technology; Technology and Health
Identifiers
urn:nbn:se:kth:diva-215975 (URN)10.1007/978-3-319-67744-6_24 (DOI)2-s2.0-85030685097 (Scopus ID)9783319677439 (ISBN)
Conference
16th IFIP TC13 International Conference on Human–Computer Interaction, INTERACT 2017, Mumbai, India, 25 September 2017 through 29 September 2017
Note

QC 20171031

Available from: 2017-10-19 Created: 2017-10-19 Last updated: 2018-10-08Bibliographically approved

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