| 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. |
- 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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| 3. |
- 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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| 4. |
- 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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