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Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden.

ABSTRACT: BACKGROUND:Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally. OBJECTIVE:The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system. METHODS:A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents. RESULTS:Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen. CONCLUSIONS:In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

SUBMITTER: Moll J

PROVIDER: S-EPMC6238103 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden.

Moll Jonas J Rexhepi Hanife H Cajander Åsa Å Grünloh Christiane C Huvila Isto I Hägglund Maria M Myreteg Gunilla G Scandurra Isabella I Åhlfeldt Rose-Mharie RM

Journal of medical Internet research 20181101 11

<h4>Background</h4>Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies h ...[more]

PMID: 30389647

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Project description:BackgroundSharing 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.ObjectiveThe 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.MethodsA 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.ResultsPatients 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.ConclusionsPatients 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.

Project description:BackgroundPatient 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.ObjectiveWe 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.MethodsData 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.ResultsOverall, 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.ConclusionsPatients 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.

Project description:BackgroundPatient portals not only provide patients with access to electronic health records (EHRs) and other digital health services, such as prescription renewals, but they can also improve patients' self-management, engagement with health care professionals (HCPs), and care processes. However, these benefits depend on patients' willingness to use patient portals and, ultimately, their experiences with the usefulness and ease of use of the portals.ObjectiveThis study aimed to investigate the perceived usability of a national patient portal and the relationship of patients' very positive and very negative experiences with perceived usability. The study was aimed to be the first step in developing an approach for benchmarking the usability of patient portals in different countries.MethodsData were collected through a web-based survey of the My Kanta patient portal's logged-in patient users in Finland from January 24, 2022, to February 14, 2022. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale (SUS) score. Open-ended questions asked the patients about their positive and negative experiences with the patient portal. The statistical analysis included multivariate regression, and the experience narratives were analyzed using inductive content analysis.ResultsOf the 1,262,708 logged-in patient users, 4719 responded to the survey, giving a response rate of 0.37%. The patient portal's usability was rated as good, with a mean SUS score of 74.3 (SD 14.0). Reporting a very positive experience with the portal was positively associated with perceived usability (β=.51; P<.001), whereas reporting a very negative experience was negatively associated with perceived usability (β=-1.28; P<.001). These variables explained 23% of the variation in perceived usability. The information provided and a lack of information were the most common positive and negative experiences. Furthermore, specific functionalities, such as prescription renewal and the ease of using the patient portal, were often mentioned as very positive experiences. The patients also mentioned negative emotions, such as anger and frustration, as part of their very negative experiences.ConclusionsThe study offers empirical evidence about the significant role of individual experiences when patients are evaluating the usability of patient portals. The results suggest that positive and negative experiences provide relevant information that can be used for improving the patient portal's usability. Usability should be improved so that patients receive information efficiently, easily, and quickly. Respondents would also appreciate interactive features in the patient portal.

Project description:BackgroundElectronic health records (EHRs) provide rich data on many domains not routinely available in other data, as such, they are a promising source to study changes in health outcomes using longitudinal study designs (eg, cohort studies, natural experiments, etc.). Yet, patient attrition rates in these data are unknown.ObjectiveThe objective of this study was to estimate overall and among adults with diabetes or hypertension: (1) patient attrition over a 3-year period at community health centers; and (2) the likelihood that patients with Medicaid permanently switched their source of primary care.Research designA retrospective cohort study of 2012-2017 data from the Accelerating Data Value Across a National Community Health Center Network (ADVANCE) Clinical Data Research Network of community health centers were used to assess EHR data attrition. Oregon Medicaid enrollment and claims data were used to estimate the likelihood of changing the source of primary care.SubjectsA total of 827,657 patients aged 19-64 with ≥1 ambulatory visit from 76 community health center systems across 20 states. In all, 232,891 Oregon Medicaid enrollees (aged 19-64) with a gap of ≥6 months following a claim for a visit billed to a primary care source.MeasuresPercentage of patients not returning within 3 years of their qualifying visit (attrition). The probability that a patient with Medicaid permanently changed their primary care source.ResultsAttrition over the 3 years averaged 33.5%; attrition rates were lower (<25%) among patients with diabetes and/or hypertension. Among Medicaid enrollees, the percentage of provider change after a 6-month gap between visits was 12% for community health center patients compared with 39% for single-provider practice patients. Over 3 years, the likelihood of a patient changing to a new provider increased with length of time since their last visit but remained lowest among community health center patients.ConclusionThis study demonstrates the use of the EHR dataset is a reliable source of data to support longitudinal studies while highlighting variability in attrition by primary care source and chronic conditions.

Dataset Information

Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden.

Publications

Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden.

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