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Hagström, J., Blease, C., Moll, J., Rexhepi, H., Scandurra, I. & Hägglund, M. (2024). Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online. Studies in Health Technology and Informatics, 310, 1422-1423
Open this publication in new window or tab >>Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online
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2024 (English)In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 310, p. 1422-1423Article in journal (Refereed) Published
Abstract [en]

Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.

Place, publisher, year, edition, pages
IOS Press, 2024
Keywords
Adolescents, electronic health records, offense, open notes, patient accessible electronic health records, young adults, Adolescent, Adult, Emotions, Health Personnel, Humans, Reading, Young Adult, emotion, health care personnel, human
National Category
Other Health Sciences Health Care Service and Management, Health Policy and Services and Health Economy Nursing
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-23585 (URN)10.3233/SHTI231225 (DOI)38269677 (PubMedID)2-s2.0-85183575176 (Scopus ID)
Note

CC BY-NC 4.0 DEED

Corresponding Author: Josefin Hagström, email: josefin.hagstrom@kbh.uu.se

Proceedings of the 19th World Congress on Medical and Health Informatics

Editors: Jen Bichel-Findlay, Paula Otero, Philip Scott, Elaine Huesing

ISBN 978-1-64368-456-7 (print) | 978-1-64368-457-4 (online)

Available from: 2024-02-08 Created: 2024-02-08 Last updated: 2024-04-15Bibliographically approved
Hagström, J., Blease, C., Scandurra, I., Moll, J., Cajander, Å., Rexhepi, H. & Hägglund, M. (2024). Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden. BMJ Paediatrics Open, 8(1), Article ID e002258.
Open this publication in new window or tab >>Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden
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2024 (English)In: BMJ Paediatrics Open, E-ISSN 2399-9772, Vol. 8, no 1, article id e002258Article in journal (Refereed) Published
Abstract [en]

Background Having online access to electronic health records (EHRs) may help patients become engaged in their care at an early age. However, little is known about adolescents using patient portals. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. The present study explored reasons for reading the EHRs, the perceived usefulness of information and functions in a patient portal and the association between frequency of use and encouragement to read the EHR. Methods Data were collected in a survey using convenience sampling, available through the Swedish online health portal during 3 weeks in January and February 2022. This study included a subset of items and only respondents aged 15-19. Demographic factors and frequencies on Likert-style questions were reported with descriptive statistics, while Fisher's exact test was used to explore differences in use frequency based on having been encouraged to read by a healthcare professional (HCP). Results Of 13 008 users who completed the survey, 218 (1.7%) were unique users aged 15-19 (females: 77.1%). One-fifth (47/218, 21.6%) had been encouraged by HCPs to read their records, and having been encouraged by HCPs was related to higher use frequency (p=0.018). All types of information were rated high on usefulness, while some functions were rated low, such as blocking specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity. Conclusions Adolescents who read their records online perceive it to be useful. Encouragement by HCPs can lead to increased use of patient portals among adolescents. Findings should be considered in the future design of patient portals for adolescents. 

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2024
Keywords
adolescent, adult, aged, article, convenience sample, electronic health record, encouragement, female, health care personnel, human, information processing, male, medical record, Sweden, telehealth
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Nursing
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-23665 (URN)10.1136/bmjpo-2023-002258 (DOI)38460965 (PubMedID)2-s2.0-85187555953 (Scopus ID)
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-01229
Note

CC BY 4.0 DEED

© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.

Correspondence Address: J. Hagström; Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; email: josefin.hagstrom@uu.se

This work was supported by NordForsk (grant number: 100477) and the Swedish Research Council for Health, Working Life and Welfare (FORTE) (grant number: 2020-01229).

Available from: 2024-03-21 Created: 2024-03-21 Last updated: 2024-04-15Bibliographically approved
Kujala, S., Simola, S., Wang, B., Soone, H., Hagström, J., Bärkås, A., . . . Johansen, M. A. (2024). Benchmarking usability of patient portals in Estonia, Finland, Norway, and Sweden. International Journal of Medical Informatics, 181, Article ID 105302.
Open this publication in new window or tab >>Benchmarking usability of patient portals in Estonia, Finland, Norway, and Sweden
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2024 (English)In: International Journal of Medical Informatics, ISSN 1386-5056, E-ISSN 1872-8243, Vol. 181, article id 105302Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Poor usability is a barrier to widespread adoption of electronic health records (EHR). Providing good usability is especially challenging in the health care context, as there is a wide variety of patient users. Usability benchmarking is an approach for improving usability by evaluating and comparing the strength and weaknesses of systems. The main purpose of this study is to benchmark usability of patient portals across countries. METHODS: A mixed-methods survey approach was applied to benchmark the national patient portals offering patient access to EHR in Estonia, Finland, Norway, and Sweden. These Nordic countries have similar public healthcare systems, and they are pioneers in offering patients access to EHR for several years. In a survey of 29,334 patients, both patients' quantitative ratings of usability and their qualitative descriptions of very positive and very negative peak experiences of portal use were collected. RESULTS: The usability scores ranged from good to fair level of usability. The narratives of very positive and very negative experiences included the benefits of the patient portals and experienced usability issues. The regression analysis of results showed that very positive and negative experiences of patient portal use explain 19-35% of the variation of usability scores in the four countries. The percentage of patients who reported very positive or very negative experiences in each country was unrelated to the usability scores across countries. CONCLUSIONS: The survey approach could be used to evaluate usability with a wide variety of users and it supported learning from comparison across the countries. The combination of quantitative and qualitative data provided an approximation of the level of the perceived usability, and identified usability issues to be improved and useful features that patients appreciate. Further work is needed to improve the comparability of the varied samples across countries. 

Place, publisher, year, edition, pages
Elsevier, 2024
Keywords
Cross-national, Electronic health records, ORA, PAEHR, Online record access, Patient portal, Patient-accessible electronic health records, Survey, Usability benchmarking, Benchmarking, Estonia, Finland, Humans, Norway, Patient Portals, Sweden, electronic health record, human, medical record
National Category
Human Computer Interaction Computer and Information Sciences Information Systems, Social aspects Information Systems
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-23491 (URN)10.1016/j.ijmedinf.2023.105302 (DOI)001126157900001 ()38011806 (PubMedID)2-s2.0-85180006899 (Scopus ID)
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-01229Academy of Finland, 352501Academy of Finland, 352503
Note

CC BY 4.0 DEED

Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.

Corresponding author at: Department of Computer Science, Aalto University, Konemiehentie 2, Espoo FI-00076, Finland. E-mail address: sari.kujala@aalto.fi (S. Kujala).

This work was supported by NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH, (Project #100477), the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (Project #2020-01229), the Strategic Research Council at the Academy of Finland (Project #352501 and #352503), and the Norwegian Centre for E-health Research.

Available from: 2023-12-28 Created: 2023-12-28 Last updated: 2024-04-15Bibliographically approved
Moll, J., Myreteg, G. & Rexhepi, H. (2024). Experiences of Patients With Mental Health Issues Having Web-Based Access to Their Records: National Patient Survey. JMIR Mental Health, 11(1), Article ID e48008.
Open this publication in new window or tab >>Experiences of Patients With Mental Health Issues Having Web-Based Access to Their Records: National Patient Survey
2024 (English)In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 11, no 1, article id e48008Article in journal (Refereed) Published
Abstract [en]

Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health issues (mean_mental health 3.38, SD_mental health 1.21; mean_others 3.52, SD_others 1.18; P=.02) believe that PAEHRs help them in shared decision-making compared to other patient groups. Conclusions: Patients with mental health issues who took part in the survey, as a group, express some minor differences in both the use of the PAEHR and their experiences regarding its usefulness, as compared to other patients, as a group. This patient group shows a slightly higher interest in 2 types of use: checking for accuracy of care in the record and blocking access to mental health notes for professionals from other parts of the health care system. Compared to other patient groups, these patients are less likely to experience that the PAEHR is a support in shared decision-making. The study indicates that the benefits of PAEHR on a general level are the same for this patient group as for other patients. The study does not support clinicians’ worry about possible harm to this patient group. Further research is however needed. 

Place, publisher, year, edition, pages
JMIR Publications, 2024
Keywords
digital health, digital mental health, eHealth, mental health, national survey, patient accessible electronic health record, patient experiences, patient portal, adult, article, clinician, controlled study, electronic health record, female, health care system, human, information processing, major clinical study, male, patient worry, shared decision making, Sweden, telehealth
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Social and Clinical Pharmacy Medical Ethics Information Systems, Social aspects Information Systems
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-23649 (URN)10.2196/48008 (DOI)001176034800001 ()38306158 (PubMedID)2-s2.0-85186107925 (Scopus ID)
Note

CC BY 4.0 DEED

© Jonas Moll, Gunilla Myreteg, Hanife Rexhepi.

Correspondence Address: J. Moll; Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro University, Örebro, Nova Building, 4th floor Fakultetsgatan 1, 70182, Sweden; email: jonas.moll@oru.se

Available from: 2024-03-07 Created: 2024-03-07 Last updated: 2024-04-15Bibliographically approved
Hagström, J., Åhlfeldt, R.-M., Blease, C., Cajander, Å., Rexhepi, H., Moll, J., . . . Hägglund, M. (2024). Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden. Journal of Adolescent Health
Open this publication in new window or tab >>Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden
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2024 (English)In: Journal of Adolescent Health, ISSN 1054-139X, E-ISSN 1879-1972Article in journal (Refereed) Epub ahead of print
Abstract [en]

Purpose: Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information. Methods: This study included a subset of items from a national online patient survey conducted in Sweden (January-February 2022), focusing on respondents aged 15–19 years. Gender and health status differences were calculated using the Kruskal-Wallis test. Results: Of 218 adolescent respondents (77.1% female), a minority had security and privacy concerns. A notable proportion (41.3%) wished to control who could see their records, and those who reported better perceived health were more likely to want to manage access to their electronic health record (H = 13.569, p = .009). Most had not experienced unauthorized access to their records (75.2%) and had never shared health information on other online applications (85.8%). More than half (56.0%) perceived some information as sensitive, where mental health was the most common (76.0%). Most felt that reading their notes improved their trust for their healthcare professional (65.6%) and supported better communication with healthcare professionals (66.5%). Discussion: In this national survey, adolescents generally reported few concerns about patient portals. Findings emphasize the need for security and privacy protection and to empower adolescents with greater control over access to their health information housed in electronic health record systems. 

Place, publisher, year, edition, pages
Elsevier, 2024
Keywords
Adolescent health, Adolescents, eHealth, Electronic health record (EHR), National survey, Patient portal, Security, Privacy, Patient accessible electronic health record (PAEHR), Usability
National Category
Information Systems Information Systems, Social aspects
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-23626 (URN)10.1016/j.jadohealth.2023.12.027 (DOI)38349307 (PubMedID)2-s2.0-85184824583 (Scopus ID)
Note

CC BY 4.0 DEED

© 2024 Society for Adolescent Health and Medicine

Address correspondence to: Josefin Hagström, M.Sc., Department of Women’s and Children’s Health, Uppsala University, Dag Hammarskjölds väg 14B, 752 37, Uppsala, Sweden.

This work was supported by NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH [Project #100477]; and the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth [Project #2020-01229]. C.B. was supported by a Keane Scholar Award.

Available from: 2024-02-22 Created: 2024-02-22 Last updated: 2024-04-15Bibliographically approved
Bärkås, A., Kharko, A., Blease, C., Cajander, Å., Johansen Fagerlund, A., Huvila, I., . . . Hägglund, M. (2023). Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden. Journal of Medical Internet Research, 25, Article ID e47841.
Open this publication in new window or tab >>Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden
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2023 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e47841Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC. OBJECTIVE: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups. METHODS: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square. RESULTS: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were "very important," but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups. CONCLUSIONS: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records. 

Place, publisher, year, edition, pages
JMIR Publications, 2023
Keywords
EHR, electronic health records, mental health, mental health care, national survey, online records access, open notes, ORA, PAEHR, patient-accessible electronic health record, patients, user experiences, adolescent, article, documentation, education, electronic health record, employment, encouragement, female, gender, health status, health survey, human, major clinical study, male, prevalence, Sweden
National Category
Computer Sciences Information Systems Information Systems, Social aspects Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-23364 (URN)10.2196/47841 (DOI)001104378500001 ()37921861 (PubMedID)2-s2.0-85176200077 (Scopus ID)
Funder
NordForsk, 100477Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-01229
Note

CC BY 4.0 DEED

©Annika Bärkås, Anna Kharko, Charlotte Blease, Åsa Cajander, Asbjørn Johansen Fagerlund, Isto Huvila, Monika Alise Johansen, Bridget Kane, Sari Kujala, Jonas Moll, Hanife Rexhepi, Isabella Scandurra, Bo Wang, Maria Hägglund. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 03.11.2023.

Corresponding Author: Annika Bärkås, MScParticipatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Dag Hammarskjölds väg 14B, 1tr, Uppsala, 752 37, Sweden. Phone: 46 734697471. Email: annika.barkas@kbh.uu.se

This work was supported by NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing forthe Future, NORDeHEALTH (Project #100477), and the Swedish Research Council for Health, Working Life, and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (Project #2020-01229). CB was supported by a Keane Scholar Award. The study funders played no role in the study design, data interpretation, writing of the results, or decision to submit the manuscript for publication.

Available from: 2023-11-16 Created: 2023-11-16 Last updated: 2024-04-15Bibliographically approved
Hägglund, M., Kharko, A., Hagström, J., Bärkås, A., Blease, C., Cajander, Å., . . . Johansen, M. A. (2023). The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia. Journal of Medical Internet Research, 25, Article ID e47573.
Open this publication in new window or tab >>The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
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2023 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e47573Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey. 

Place, publisher, year, edition, pages
JMIR Publications, 2023
Keywords
electronic health record, health data, national survey, online medical record, online records access, patient access, patient portal, patient-accessible electronic health record, Cross-Sectional Studies, Electronic Health Records, Estonia, Female, Finland, Humans, Norway, Patient Portals, Sweden, cross-sectional study, epidemiology, human, medical record
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Public Health, Global Health, Social Medicine and Epidemiology Information Systems
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-23380 (URN)10.2196/47573 (DOI)001106906500004 ()37955963 (PubMedID)2-s2.0-85176787931 (Scopus ID)
Projects
Nordic eHealth project, NORDeHEALTH
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, #2020-01229Academy of Finland, #352501Academy of Finland, #352503
Note

CC BY 4.0 DEED

©Maria Hägglund, Anna Kharko, Josefin Hagström, Annika Bärkås, Charlotte Blease, Åsa Cajander, Catherine DesRoches, Asbjørn Johansen Fagerlund, Barbara Haage, Isto Huvila, Iiris Hörhammer, Bridget Kane, Gunnar O Klein, Eli Kristiansen, Kerli Luks, Jonas Moll, Irene Muli, Eline Hovstad Raphaug, Hanife Rexhepi, Sara Riggare, Peeter Ross, Isabella Scandurra, Saija Simola, Hedvig Soone, Bo Wang, Mae

Corresponding Author: Maria Hägglund, PhD, Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Mtc-huset, Dag Hammarskjölds Väg 14b, 1 Tr, Uppsala, 752 37 Sweden. Phone: 46 729999381. Email: maria.hagglund@kbh.uu.se 

This work was supported by NordForsk through funding to Nordic eHealth for Patients: Benchmarking and Developing for theFuture, NORDeHEALTH (project #100477), the Swedish Research Council for Health, Working Life and Welfare (Forskningsrådetför hälsa, arbetsliv och välfärd [FORTE]) through the funding to Beyond Implementation of eHealth (project #2020-01229), the Strategic Research Council at the Academy of Finland (project #352501 and #352503), and the Norwegian Centre for E-health Research. CB was supported by a Keane Scholar Award. The funders played no role in the study design, data interpretation,writing of the results, or decision to submit the manuscript for publication.

Available from: 2023-11-23 Created: 2023-11-23 Last updated: 2024-04-15Bibliographically approved
Rexhepi, H., Huvila, I., Åhlfeldt, R.-M. & Cajander, Å. (2022). Cancer patients' information seeking behaviour related to online electronic healthcare records. In: Peter Bath; Päivi Jokela; Laura Sbaffi (Ed.), Proceedings of the 18th International Symposium on Health Information Management Research: . Paper presented at The 18th International Symposium on Health Information Management Research, iSHIMR, Using digital information for better patient health, care and well-being, Kalmar, Sweden (Online) 17-18 October 2020. Kalmar: Linnaeus University; University of Sheffield
Open this publication in new window or tab >>Cancer patients' information seeking behaviour related to online electronic healthcare records
2022 (English)In: Proceedings of the 18th International Symposium on Health Information Management Research / [ed] Peter Bath; Päivi Jokela; Laura Sbaffi, Kalmar: Linnaeus University; University of Sheffield , 2022Conference paper, Published paper (Refereed)
Abstract [en]

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.

Place, publisher, year, edition, pages
Kalmar: Linnaeus University; University of Sheffield, 2022
Keywords
Electronic healthcare records, information behavior, health information, information horizons, patients
National Category
Computer and Information Sciences
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-19485 (URN)10.15626/ishimr.2020.05 (DOI)978-91-89081-09-3 (ISBN)
Conference
The 18th International Symposium on Health Information Management Research, iSHIMR, Using digital information for better patient health, care and well-being, Kalmar, Sweden (Online) 17-18 October 2020
Note

CC BY-NC-ND 4.0

Available from: 2021-02-22 Created: 2021-02-22 Last updated: 2022-05-05Bibliographically approved
Rexhepi, H., Moll, J., Huvila, I. & Åhlfeldt, R.-M. (2022). 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. In: Peter Bath; Päivi Jokela; Laura Sbaffi (Ed.), Proceedings of the 18th International Symposium on Health Information Management Research: . Paper presented at The 18th International Symposium on Health Information Management Research, iSHIMR, Using digital information for better patient health, care and well-being, Kalmar, Sweden (Online) 17-18 October 2020. Kalmar: Linnaeus University; University of Sheffield
Open this publication in new window or tab >>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 (English)In: Proceedings of the 18th International Symposium on Health Information Management Research / [ed] Peter Bath; Päivi Jokela; Laura Sbaffi, Kalmar: Linnaeus University; University of Sheffield , 2022Conference paper, Published paper (Refereed)
Abstract [en]

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.

Place, publisher, year, edition, pages
Kalmar: Linnaeus University; University of Sheffield, 2022
Keywords
abnormal test results, bad news, patient accessible electronic health record, patient, physician
National Category
Information Systems
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-19486 (URN)10.15626/ishimr.2020.17 (DOI)978-91-89081-09-3 (ISBN)
Conference
The 18th International Symposium on Health Information Management Research, iSHIMR, Using digital information for better patient health, care and well-being, Kalmar, Sweden (Online) 17-18 October 2020
Note

CC BY-NC-ND 4.0

Available from: 2021-02-22 Created: 2021-02-22 Last updated: 2022-05-05Bibliographically approved
Hägglund, M., Cajander, Å., Rexhepi, H. & Kane, B. (2022). Editorial: Personalized Digital Health and Patient-Centric Services. Frontiers in Computer Science, 4, Article ID 862358.
Open this publication in new window or tab >>Editorial: Personalized Digital Health and Patient-Centric Services
2022 (English)In: Frontiers in Computer Science, E-ISSN 2624-9898, Vol. 4, article id 862358Article in journal, Editorial material (Refereed) Published
Place, publisher, year, edition, pages
Frontiers Media S.A., 2022
Keywords
digital divide, digital health (eHealth), participatory design (PD), patient accessible electronic health record, self-management, telemedicine, usability
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy Human Computer Interaction Information Systems Computer and Information Sciences
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-21060 (URN)10.3389/fcomp.2022.862358 (DOI)000783312500001 ()2-s2.0-85127402072 (Scopus ID)
Note

CC BY 4.0

Creative Commons Attribution License (CC BY)

Copyright © 2022

Correspondence: Maria Hägglund maria.hagglund@kbh.uu.se

Available from: 2022-04-14 Created: 2022-04-14 Last updated: 2022-09-27Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-8957-9853

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