| 1. |
- Cajander, Åsa, et al.
(författare)
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Designing eHealth Services for Patients and Relatives : Critical Incidents and Lessons to Learn
- 2016
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Ingår i: PROCEEDINGS OF THE NORDICHI '16. - New York, NY, USA : Association for Computing Machinery (ACM). - 9781450347631
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 2. |
- Cajander, Åsa, Professor, et al.
(författare)
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Electronic Health Records Are More Than a Work Tool : Conflicting Needs of Direct and Indirect Stakeholders
- 2019
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Ingår i: Proc. 37th CHI Conference on Human Factors in Computing Systems. - New York, NY, USA : ACM Publications. - 9781450359702
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 5. |
- Cajander, Åsa, et al.
(författare)
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Worlds Apart - Doctors’ Technological Frames and Online Medical Records
- 2015
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Ingår i: INTERACT 2015 adjunct proceedings. - Bamberg : University of Bamberg Press. - 9783863093525 - 9783863093532 ; , s. 357-367
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 6. |
- Grünloh, Christiane
(författare)
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Harmful or Empowering? : Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 7. |
- Grünloh, Christiane, et al.
(författare)
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Patient Empowerment Meets Concerns for Patients : a Study of Patient Accessible Electronic Health Records in Sweden
- 2016
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Ingår i: Exploring Complexity in Health. - : IOS Press. - 9781614996774 - 9781614996781
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Konferensbidrag (refereegranskat)abstract
- BackgroundAs part of a EU project, the Swedish county Uppsala launched a patient portal, Journalen in 2012 [1]. Patients can now access their Electronic Health Records (EHR) online, which is aimed to increase patient empowerment. The medical professionals reacted strongly on patients accessing the medical records. Main concerns were related to quality of care, the effect on their work environment, providing bad news through the eHealth service, and also the wellbeing of patients. While the opportunities of implementing these e-health services seem promising, the concerns of the medical professionals have to be understood and addressed, as well as the actual use of the system by patients. This presentation integrates results from two interview studies with physicians and patients related to patients accessing their medical records online [2,3].MethodThe presented results are synthesis of the interviews studies with 12 physicians [2] and 30 patients [3], which took place about 6–12 months after the launch of the portal. The synthesis presented in this paper focus on Technological Frames [4] of physicians and patients including the attitudes and experiences in relation to possible (1) anxiety creation, (2) increased of workload, and (3) the general value of patients reading medical records.Results Anxiety creation due to receiving bad news. Many physicians believe that breaking bad news to patients during a patient encounter is vital as this would give them the possibility to also explain treat- ments and answer questions. Somewhat unexpectedly, some patients preferred receiving bad news through Journalen instead of waiting for the physicians. The patients argue that waiting times causes more anxiety. The choice of not accessing is also important, as there are patients who do not want to receive bad news before a patient encounter. Workload increases. Many physicians are worried about the work- load of doctors, as reading the medical record online may result in increased number of phone calls because of anxious patients. However, many patients did not tend to take any additional contacts to ask questions. Some of the patients even believe that access to their medical records reduces the number of contacts with healthcare. Usefulness of accessing online. Many physicians are concerned that online access will have a negative impact on the patient such as increased anxiety and misconceptions as they lack understanding of medical terms. Unlike the doctors’ perspective, many patients argue that they do not have major difficulties in understanding the contents. They also argue that Journalen was central to their coping with their decease.Conclusion From this study it is clear that the Technological Frames of physicians differ from those of patients, and that they have different attitudes and experiences towards the system. The intention from the politicians was that the system would contribute to Patient Empowerment, but that framing of the technology differs from the physicians’ view, as they are concerned of the consequences. More research is needed on the framing of the technology and how that has been changed after the launch of the system.[1] Erlingsdottir, G., Lindholm, C. When patient empowerment encounters professional autonomy: The conflict and negotiation process of inscribing an eHealth service. Scandinavian journal of public administration 2015;19(29):27- 48.[2] Grünloh, C., Cajander, Å., Myreteg, G., “The Record is our Work Tool!” - Physicians’ Framing of a Patient Portal in Sweden. J Med Internet Res (submitted).[3] Rexhepi, H., Åhlfeldt, R.-M., Cajander, Å, & Huvila, I. (2015). Cancer Patients’ Attitudes and Experiences of Online Medical Records, 1–8. Proceedings of the 17th International Symposium on Health Information Management Research ISHIMR 2015.[4] Orlikowski, W.J., Gash, D.C. Technological Frames: Making sense of information technology in organizations. Transactions on Information Systems 1994;12(2):174–207. doi: 10.1145/196734.196745
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| 8. |
- Grünloh, Christiane, et al.
(författare)
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"The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden
- 2016
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Ingår i: Journal of Medical Internet Research. - Toronto : JMIR Publications Inc.. - 1438-8871. ; 18:6, s. 470-483
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
- Grünloh, Christiane
(författare)
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To Share or Not to Share? : Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information
- 2016
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 10. |
- Grünloh, Christiane, et al.
(författare)
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Using Critical Incidents in Workshops to Inform eHealth Design
- 2017
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Ingår i: Human-Computer Interaction - INTERACT 2017. - Cham : Springer. - 9783319677439 - 9783319677446 ; , s. 364-373
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Konferensbidrag (refereegranskat)abstract
- 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.
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