1.
Fagerlund, A. J., et al.
(author)
Experiences from patients in mental healthcare accessing their electronic health records : Results from a cross-national survey in Estonia, Finland, Norway, and Sweden
2024
In: BMC Psychiatry. - : BioMed Central (BMC). - 1471-244X. ; 24:1
Journal article (peer-reviewed) abstract
Background: Patients’ online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users’ overall experiences with national PAEHR services. Methods: The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users’ experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data. Results: 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one in ten (10.7%) noted that unauthorised individuals had seen their health information. Conclusions: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences.
2.
Moll, Jonas, 1982-, et al.
(author)
Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients’ Access to Electronic Health Records in 4 European Countries : Framework Evaluation Study
2024
In: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26
Journal article (peer-reviewed) abstract
Background: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland, Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-country analysis has not been developed. Objective: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use. Methods: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. Results: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared with patients; human-computer interface; people; workflow and communication; the health care organization’s internal policies, procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the health care system context dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries. Conclusions: This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs.
3.
Hägglund, Maria, Lektor, 1975-, et al.
(author)
A Nordic Perspective on Patient Online Record Access and the European Health Data Space
2024
In: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26:1
Journal article (peer-reviewed) abstract
The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA’s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients’ ORA—NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.
4.
Bärkås, Annika, et al.
(author)
Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients : Results from a Nationwide Survey in Sweden
2023
In: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
Journal article (peer-reviewed) abstract
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.
5.
Hägglund, Maria, Lektor, 1975-, et al.
(author)
The NORDeHEALTH 2022 Patient Survey : Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
2023
In: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
Journal article (peer-reviewed) abstract
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.
6.
Hagström, Josefin, et al.
(author)
Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online
2024
In: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1422-1423
Journal article (peer-reviewed) abstract
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.
7.
Hagström, Josefin, et al.
(author)
Security and Privacy of Online Record Access : A Survey of Adolescents' Views and Experiences in Sweden
2024
In: Journal of Adolescent Health. - : Elsevier. - 1054-139X .- 1879-1972.
Journal article (peer-reviewed) abstract
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.
8.
Scandurra, Isabella, 1973-, et al.
(author)
Is Access to eHealth Records Important for Patients? : Opinions of Healthcare Personnel
2015
In: MedInfo 2015. - Amsterdam, Netherlands : IOS Press. - 9781614995647 - 9781614995630 ; , s. 908-908
Conference paper (peer-reviewed) abstract
Sweden has had significant progress with the the introduction of electronic health records. A pilot county deployed in an eHealth service in 2012, giving access to health records for all of its patients. This eHealth service is, however, a controversial issue. Two surveys were conducted to discover whether healthcare professionals' opinions differ between professionals, and between staff who have had experience with patients using eHealth records and those, to date, who have had none. Experienced nurses found this eHealth service more important for the patients compared to unexperienced nurses outside the pilot county, as well as both semi-experienced physicians.
9.
Ålander, Ture, et al.
(author)
Experiences of Healthcare Professionals to the Introduction in Sweden of a Public eHealth Service : Patients' Online Access to their Electronic Health Records
2015
In: Studies in Health Technology and Informatics. - Amsterdam, Netherlands : IOS Press. - 0926-9630 .- 1879-8365. ; 216, s. 153-157, s. 153-157
Journal article (peer-reviewed) abstract
Patients' increasing demands for medical information, the digitization of health records and the fast spread of Internet access form a basis of introducing new eHealth services. An international trend is to provide access for patients to health information of various kind. In Sweden, access by patients to their proper electronic health record (EHR) has been provided in a pilot county since November 2012. This eHealth service is controversial and criticism has arised from the clinical professions, mainly physicians. Two web surveys were conducted to discover whether the opinions of healthcare professionals differ; between staff that have had experience with patients accessing their own EHR and those who have no such expericence. Experienced nurses found the EHR more important for the patients and a better reform, compared to unexperienced nurses in the rest of the country. Similarly, physicians with their own experience had a more positive attitude compared to non-experienced physicians. The conclusion of this study is that healthcare professionals must be involved in the implementation of public eHealth services such as EHRs and that real experiences of the professionals should be better disseminated to their inexperienced peers.
10.
Scandurra, Isabella, 1973-, et al.
(author)
Experiences of Novel e-Health Services for Patients - Pros, Cons and Future Challenge. Workshop
2013
In: Proceedings of the 14th World Congress on Medical and Health Informatics (MEDINFO 2013). - Amsterdam, Netherlands : IOS Press. - 0926-9630 .- 1879-8365. - 9781614992882 - 9781614992899 ; , s. 1254-
Conference paper (peer-reviewed) abstract
It is crucial to involve the patient in the development of patient accessible eHealth systems. But who, how and when? Patient involvement in development of e-health services for citizens has gained little attention to date. It is important to highlight the experiences, pros and cons, and explore new issues and future challenges that arise for all different stakeholders involved in e-health development.One source of inspiration for this workshop is the European funded SUSTAINS project which aims to deploy e-health services with the patient as an important actor. Another is the Swedish research project My Care Pathways where focus is on development of new e-health services that enable the patient to follow and interact with their care processes.This workshop aims to discuss the experiences made in ongoing European deployment projects of online e-health services as well as methods to improve patient participation in such development based on current evaluations and future needs.The objective is to collect and disseminate various experiences from novel e-health service deployment in Europe; during the workshop active participation is desired via twitter and other eLearning tools, and afterwards the results of the workshop are published on easily accessible web sites.
