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Electronic Health Records Are More Than a Work Tool: Conflicting Needs of Direct and Indirect Stakeholders
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
KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-2319-3186
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 [en]
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: urn:nbn:se:kth:diva-235847OAI: oai:DiVA.org:kth-235847DiVA, id: diva2:1253993
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
In thesis
1. Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
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

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CiteExportLink to record
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Citation style
  • apa
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