eHealth platforms as user–data communication: Examining patients’ struggles with digital health data

Mahnke, Martina Skrubbeltrang; Nielsen, Mikka

doi:10.2478/nor-2021-0040

Cited by 3 publications

(4 citation statements)

References 25 publications

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“…Patient portals that provide access to electronic health records (EHRs) are becoming increasingly common. Such access to EHRs offers the means for patients to better understand personal health issues, treatment plans, and decisions [ 1 ], thus supporting personal health management [ 2 ] and informing patients between time- and resource-consuming clinic visits or phone appointments [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey

Kujala¹,

Hörhammer²,

Väyrynen³

et al. 2022

J Med Internet Res

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Background Patient portals that provide access to electronic health records offer a means for patients to better understand and self-manage their health. Yet, patient access to electronic health records raises many concerns among physicians, and little is known about the use practices and experiences of patients who access their electronic health records via a mature patient portal that has been available for citizens for over five years. Objective We aimed to identify patients’ experiences using a national patient portal to access their electronic health records. In particular, we focused on understanding usability-related perceptions and the benefits and challenges of reading clinical notes written by health care professionals. Methods Data were collected from 3135 patient users of the Finnish My Kanta patient portal through a web-based survey in June 2021 (response rate: 0.7%). Patients received an invitation to complete the questionnaire when they logged out of the patient portal. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale score. Patients were also asked about the usefulness of features, and whether they had discussed the notes with health professionals. Open-ended questions were used to ask patients about their experiences of the benefits and challenges related to reading health professionals’ notes. Results Overall, patient evaluations of My Kanta were positive, and its usability was rated as good (System Usability Scale score approximation: mean 72.7, SD 15.9). Patients found the portal to be the most useful for managing prescriptions and viewing the results of examinations and medical notes. Viewing notes was the most frequent reason (978/3135, 31.2%) for visiting the portal. Benefits of reading the notes mentioned by patients included remembering and understanding what was said by health professionals and the instructions given during an appointment, the convenience of receiving information about health and care, the capability to check the accuracy of notes, and using the information to support self-management. However, there were challenges related to difficulty in understanding medical terminology, incorrect or inadequate notes, missing notes, and usability. Conclusions Patients actively used medical notes to receive information to follow professionals' instructions to take care of their health, and patient access to electronic health records can support self-management. However, for the benefits to be realized, improvements in the quality and availability of medical professionals’ notes are necessary. Providing a standard information structure could help patients find the information they need. Furthermore, linking notes to vocabularies and other information sources could also improve the understandability of medical terminology; patient agency could be supported by allowing them to add comments to their notes, and patient trust of the system could be improved by allowing them to control the visibility of the professionals’ notes.

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Section: Introductionmentioning

confidence: 99%

Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey

Kujala¹,

Hörhammer²,

Väyrynen³

et al. 2022

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…This identified experience of ambiguity and uncertainty emphasizes the importance of meaningful communication practices -whether online or in the consultation between doctor and patient. The emergence of this new medical-domestic space (Mahnke & Nielsen, 2021) requires new forms of dialogue between doctor and patient, potentially involving correction of misunderstandings and misinterpretations of the data on the patient's side. The level of ambiguity or insecurity, however, naturally depends on the complexity of data and the extent to which it affects the patient's health.…”

Section: Discussionmentioning

confidence: 99%

“…They argue that meta-processes of datafication rely on communication technologies and people's communication about the information they receive. Even though patients generally welcome the possibility of accessing their data (Barello et al, 2019), studies also show that many patients struggle, especially when it comes to making sense of digital health data (Mahnke & Nielsen, 2021). This research takes its starting point in sundhed.dk as a form of communication platform and connects this to early definitions of eHealth as an information and communication technology with the idea of approaching the analysis of all-encompassing datafication processes through a communicative lens.…”

Section: Introductionmentioning

confidence: 94%

Data sense-making and communicative gaps on sundhed.dk

2023

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This paper examines personal experiences of digital health data on the Danish eHealth platform sundhed.dk. Taking a patient’s view, the paper understands data sense-making as an embodied communicative practice. The empirical analysis, consisting of 24 purposefully sampled interviews, is brought together with the conceptual framework describing and unpacking the ambivalences to be found in digital health data experiences into themes of data ambivalence, emotional ambivalence, communicative ambivalence and identity ambivalence. This in-depth empirical description of patients’ ambivalent experiences contributes to a more nuanced understanding of the profound changes digital health data is having on a patients’ everyday lives. In particular, it emphasizes the communicative challenges arising from the constant availability of digital health data anytime, anywhere, and calls for further research into the new and unfamiliar communicative situations in which patients are placed and forced to navigate in.

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“…Patient portals that provide access to electronic health records (EHRs) are becoming increasingly common. Such access to EHRs offers the means for patients to better understand personal health issues, treatment plans, and decisions [1], thus supporting personal health management [2] and informing patients between time-and resource-consuming clinic visits or phone appointments [3]. "Open notes," which are clinical notes that are shared with patients [4], can be considered an essential part of any patient-accessible EHR.…”

Section: Introductionmentioning

confidence: 99%

Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey (Preprint)

Kujala¹,

Hörhammer²,

Väyrynen³

et al. 2022

Preprint

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BACKGROUND Patient portals that provide access to electronic health records offer a means for patients to better understand and self-manage their health. Yet, patient access to electronic health records raises many concerns among physicians, and little is known about the use practices and experiences of patients who access their electronic health records via a mature patient portal that has been available for citizens for over five years. OBJECTIVE We aimed to identify patients’ experiences using a national patient portal to access their electronic health records. In particular, we focused on understanding usability-related perceptions and the benefits and challenges of reading clinical notes written by health care professionals. METHODS Data were collected from 3135 patient users of the Finnish My Kanta patient portal through a web-based survey in June 2021 (response rate: 0.7%). Patients received an invitation to complete the questionnaire when they logged out of the patient portal. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale score. Patients were also asked about the usefulness of features, and whether they had discussed the notes with health professionals. Open-ended questions were used to ask patients about their experiences of the benefits and challenges related to reading health professionals’ notes. RESULTS Overall, patient evaluations of My Kanta were positive, and its usability was rated as good (System Usability Scale score approximation: mean 72.7, SD 15.9). Patients found the portal to be the most useful for managing prescriptions and viewing the results of examinations and medical notes. Viewing notes was the most frequent reason (978/3135, 31.2%) for visiting the portal. Benefits of reading the notes mentioned by patients included remembering and understanding what was said by health professionals and the instructions given during an appointment, the convenience of receiving information about health and care, the capability to check the accuracy of notes, and using the information to support self-management. However, there were challenges related to difficulty in understanding medical terminology, incorrect or inadequate notes, missing notes, and usability. CONCLUSIONS Patients actively used medical notes to receive information to follow professionals' instructions to take care of their health, and patient access to electronic health records can support self-management. However, for the benefits to be realized, improvements in the quality and availability of medical professionals’ notes are necessary. Providing a standard information structure could help patients find the information they need. Furthermore, linking notes to vocabularies and other information sources could also improve the understandability of medical terminology; patient agency could be supported by allowing them to add comments to their notes, and patient trust of the system could be improved by allowing them to control the visibility of the professionals’ notes.

show abstract

eHealth platforms as user–data communication: Examining patients’ struggles with digital health data

Cited by 3 publications

References 25 publications

Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey

Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey

Data sense-making and communicative gaps on sundhed.dk

Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey (Preprint)

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