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- Blease, Charlotte, et al.
(författare)
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Patients, clinicians and open notes : information blocking as a case of epistemic injustice
- 2022
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Ingår i: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 48:10, s. 785-793
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Tidskriftsartikel (refereegranskat)abstract
- In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (’open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.
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| 2. |
- Bärkås, Annika, et al.
(författare)
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Patients' Access to Their Psychiatric Records : A Comparison of Four Countries
- 2022
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Ingår i: Challenges of Trustable AI and Added-Value on Health. - Amsterdam; Berlin; Washington, DC : IOS Press. - 9781643682846 - 9781643682853 ; 294, s. 510-514
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Konferensbidrag (refereegranskat)abstract
- Several Nordic and Baltic countries are forerunners in the digitalization of patient ehealth services and have since long implemented psychiatric records as parts of the ehealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.
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| 3. |
- Huvila, Isto, et al.
(författare)
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Technological and informational frames : explaining age-related variation in the use of patient accessible electronic health records as technology and information
- 2022
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Ingår i: Information Technology and People. - : Emerald Group Publishing Limited. - 0959-3845 .- 1758-5813. ; 35:8, s. 1-22
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Tidskriftsartikel (refereegranskat)abstract
- Purpose – Data from a national patient survey (N51,155) of the Swedish PAEHR “Journalen” users were analysed, and an extended version of the theory of technological frames was developed to explain the variation in the technological and informational framing of information technologies found in the data. Design/methodology/approach – Patient Accessible Electronic Health Records (PAEHRs) are implemented globally to address challenges with an ageing population. However, firstly, little is known about age-related variation in PAEHR use, and secondly, user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other. The purpose of this study is to investigate these two under-studied aspects of PAEHRs and propose a framework based on the theory of technological frames to support studying the second aspect, i.e. the interplay of information and technology–related perceptions. Findings – The results suggest that younger respondents were more likely to be interested in PAEHR contents for general interest. However, they did not value online access to the information as high as older ones. Older respondents were instead inclined to use medical records information to understand their health condition, prepare for visits, become involved in their own healthcare and think that technology has a much potential. Moreover, the oldest respondents were more likely to consider the information in PAEHRs useful and aimed for them but to experience the technology as inherently difficult to use. Research limitations/implications – The sample excludes non-users and is not a representative sample ofthe population of Sweden. However, although the data contain an unknown bias, there are no specific reasons tobelieve that it would differently affect the survey’s age groups. Practical implications – Age should be taken into account as a key factor that influences perceptions of the usefulness of PAEHRs. It is also crucial to consider separately patients’ views of PAEHRs as a technology and of the information contained in the EHR when developing and evaluating existing and future systems and information provision for patients. Social implications – This study contributes to bridging the gap between information behaviour and systems design research by showing how the theory of technological frames complemented with parallel informational frames to provide a potentially powerful framework for elucidating distinct conceptualisations of (information) technologies and the information they mediate. The empirical findings show how information and information technology needs relating to PAEHRs vary according to age. In contrast to the assumptions in much of the earlier work, they need to be addressed separately. Originality/value – Few earlier studies focus on (1) age-related variation in PAEHR use and (2) user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other.
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| 6. |
- Rexhepi, Hanife, 1984-, et al.
(författare)
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Cancer patients' information seeking behaviour related to online electronic healthcare records
- 2022
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Ingår i: Proceedings of the 18th International Symposium on Health Information Management Research. - Kalmar : Linnaeus University; University of Sheffield. - 9789189081093
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Konferensbidrag (refereegranskat)abstract
- Patients’ online access to their EHR together with the rapid proliferation of medical information on theInternet has changed the way patients use the information to learn about their health. It is welldocumented that patients often turn to the Internet to find information about their health and care.However, little is known about patients´ information seeking behaviour when using online EHRs. Byusing information horizons as an analytical tool this paper aims to investigate the informationbehaviour of cancer patients who have chosen to view their EHRs (readers) and to those who havenot made that option (non-readers). Thirty interviews were conducted with patients. Based oninformation horizons, it seems that non-reading is associated with living in a narrower informationworld in comparison to readers. The findings do not suggest that the smallness would be a result of anactive avoidance of information, or that it would be counterproductive for the patients.
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| 7. |
- Rexhepi, Hanife, 1984-, et al.
(författare)
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Do you want to receive bad news through your patient accessible electronic health record? : A national survey on receiving bad news in an era of digital health
- 2022
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Ingår i: Proceedings of the 18th International Symposium on Health Information Management Research. - Kalmar : Linnaeus University; University of Sheffield. - 9789189081093
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Konferensbidrag (refereegranskat)abstract
- Despite the fact that patient accessible electronic health records (PAEHRs) have been around for manyyears in several countries, there is a lack of research investigating patient´ preferences for receiving badnews, including through PAEHRs. Little is also known about the characteristics of the patients who preferto receive bad news through the PAEHR in terms of e.g. medical diagnosis, age and educational level.This study, based on a national patient survey in Sweden (N=2587), investigated this. Results showthat, generally, receiving bad news by reading in the PAEHR is still among the least preferred options.Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women(p=0.001), and the same goes for those who are not working/have worked in healthcare (p=0.007). Aneffect of disease groups was also found, showing that diabetes patients in particular, want to receivebad news through the PAEHR.
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