After six years and eight months of doing research, my PhD thesis has finally been published and printed. The title is “Harmful or Empowering? Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records” and deals with the national eHealth service in Sweden that enables people to access their electronic health records whenever they want; online, from the comfort of their home.
Thesis Summary
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.
The research questions the thesis is trying to answer are:
- How do physicians view PAEHR in relation to their work environment and patient participation?
- How do patients view PAEHR and make use of it? What are their experiences of accessing their EHR?
- Which human values are implicated through engagement or interaction with 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.
Included Papers
A PhD thesis can be either a monograph or a thesis by publication (also called a compilation thesis). My thesis is such a compilation thesis, which consists of a “kappa” (the comprehensive thesis summary) and six publications. The following figure gives an overview of the included papers, how they are connected to each other and to the related chapters:
Paper I proposes an analytical method which was informed by the theories and results of Paper II. The interview study presented in Paper II and III informed the survey design (Paper IV and Paper V). Furthermore, the themes identified in Paper II informed the analysis conducted in Paper V, as well as the analysis of human values associated with the eHealth service in section 4.3 of my thesis. The reflections in Paper VI were grounded in the empirical research conducted for Paper II–V.
Paper I
Using Technological Frames as an Analytic Tool in Value Sensitive Design
Christiane Grünloh. 2018. Ethics and Information Technology.
This article proposes the use of Technological Frames (TF) as an analytic tool in VSD to support the identification of human values. Technological Frames (TF) are used to investigate people’s interpretation of a particular technology, which can be influenced and informed by human values. The article exemplifies the use of TF in VSD with the case of PAEHRs in Sweden. Previously identified frames serve as a basis to further identify corresponding values, including congruence, tensions, and/or inconsistencies between them. Hereby the article illustrates how the TF approach can be used as a method in relation to the empirical, technical, and conceptual investigations within VSD.
Paper II
“The Record is Our Work Tool!” – Physicians’ Framing of a Patient Portal in Sweden
Christiane Grünloh, Åsa Cajander, and Gunilla Myreteg. 2016. Journal of Medical Internet Research 18, 6, e167.
This journal paper presents the results of a qualitative study investigating the perspective of physicians concerning a patient portal that gives patients access to their Electronic Health Record (EHR), in particular in relation to their work environment. Semi-structured interviews with twelve physicians from different specialities (Oncology, Orthopaedics, Emergency Medicine, Internal Medicine) were analysed and discussed based on the theory of Technological Frames (TF). A thematic analysis of the data set was conducted and four main themes were identified: work tool, process, workload, and control. In relation to the first three themes, physicians’ concerns about patients was another theme identified, which were based to some extent on a generalised view of patients that does not consider patients who already actively participate in their care. We conclude that transferring paper-based processes into digital processes has consequences for the work environment (e.g., change of work practices).
Paper III
“Why Do They Need to Check me?” Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study
Christiane Grünloh, Gunilla Myreteg, Åsa Cajander, and Hanife Rexhepi. 2018. Journal of Medical Internet Research 20, 1, e11.
This journal paper presents a qualitative data analysis of the same interviews as in Paper II. In this paper, a selection of data was used for an in-depth thematic analysis, which consisted of data that had been previously coded ‘patient empowerment’. The aim of this analysis was to understand how physicians view the idea of patient participation in their healthcare in general and in particular in relation to Patient Accessible Electronic Health Records (PAEHRs). Although the physicians stated that they, in principle, were in favour of patient participation, the analysis found little support for this position in their descriptions of their daily practice where that participation would have been actualised. On the contrary, we identified several signs that 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 whose questions and requests for more detailed information are thus being interpreted as signs of critique and mistrust towards the physician. We argue that the concept of patient empowerment is problematic as it triggers an interpretation of “power” in healthcare as a zero-sum, which is not helpful for the maintenance of the relationship between the actors.
Paper IV
Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in Sweden
Jonas Moll, Hanife Rexhepi, Åsa Cajander, Christiane Grünloh, Isto Huvila, Maria Hägglund, Gunilla Myreteg, Isabella Scandurra, Rose-Mharie Åhlfeldt. 2018. Journal of Medical Internet Research 20, 11, e278.
This journal paper presents a descriptive analysis of a national patient survey in Sweden. The aim was to investigate patients’ experiences when accessing their EHR through the Swedish national patient portal. This article gives an overview of the study design and presents the results of the descriptive analysis that focused on user characteristics, usage, and general attitudes towards the system. The results show that the majority of respondents were female and many have worked or still work in healthcare. Most respondents used the system infrequently, and often to get an overview of their health status. Furthermore, laboratory test results were shown to be the most important type of information to have access to. The majority of the patients wants to have access to new information within a day of having carried out the test, and were strongly positive towards the system.
Paper V
Electronic Health Records Are More Than a Work Tool: Conflicting Needs of Direct and Indirect Stakeholders
Åsa Cajander and Christiane Grünloh. Manuscript submitted to the ACM Conference on Human Factors in Computing Systems (CHI ’19)
This article is based on a data set collected in the national patient survey presented in Paper IV. In this paper, we present the analysis of survey data from 520 patients who received care in Region Uppsala, with a special focus on the four main themes identified in Paper II. The aim was to investigate the concerns raised by physicians from the patients’ perspective to shed some light on whether these issues have been justified in practice. The results show that the needs and wishes of patients conflict with the preconceptions of patient needs in the eyes of physicians as well as their own work-related requirements. We conclude that PAEHR has become a tool for patients in handling their medical conditions and allowing them to engage in their own healthcare. Thus the electronic health record has become more than just a tool exclusively for healthcare professionals. This paper highlights the need to consider the accuracy of stakeholders’ opinions about other stakeholder groups and discusses the implications of the results in relation to design, methods and tools in HCI, and reorientation of work.
Paper VI
Using Critical Incidents in Workshops to Inform eHealth Design
Christiane Grünloh, Jean D. Hallewell Haslwanter, Bridget Kane, Eunji Lee, Thomas Lind, Jonas Moll, Hanife Rexhepi, Isabella Scandurra. 2017. INTERACT 2017, Part I, LNCS 10513, pp. 364–373.
This article describes a workshop method based on the concept of Critical Incidents (CIs). This concept is used to reflect on, and critically analyse different experiences and practices in relation to eHealth services for patients and their relatives. The workshop format was carried out at the 9th Nordic Conference on Human-Computer Interaction (NordiCHI 2016) and was considered helpful to identify possible implications for eHealth design. This article describes and discusses the workshop format and gives recommendations how it can be adapted to use with actual stakeholders during eHealth development projects.
The Defence
The public defence of my PhD will take place on November 2nd, 13:00 in room F3, Lindstedtsvägen 3, Stockholm, Sweden.
The opponent is Associate Professor David Hendry from the University of Washington in Seattle, US. He is also Co-director of the Value Sensitive Design Research Lab. The external examination committee consists of Prof. Geraldine Fitzpatrick, TU Wien, Vienna, Austria; Prof. Sabine Koch, Karolinska Institutet, Stockholm, Sweden, and Prof. Gunnar Ellingsen, The Arctic University of Norway, Tromsø, Norway.
The process of a public defence in Sweden is outlined in more detail here. After the chairperson opens the defence, the opponent presents my work and puts it into context in the field, before asking me critical questions. Afterwards the committee members ask questions and finally the floor is open for the audience to ask questions. Then, the external examination committee will make the final decision on pass or fail.
