Gunilla Myreteg

BACKGROUND Patient accessible electronic health records (PAEHRs) aim to enhance patient engagement by providing access to clinical information, thus strengthening patient-clinician relationships. In Sweden, implementation of a national PAEHR began in 2012, and reached nationwide scale-up in 2018, when all residents above the age of 16 were provided online record access (ORA). Adoption and use has seen a steady increase over time. OBJECTIVE This study compares data from two national patient surveys conducted in Sweden (in 2016 and 2022) regarding patients' experiences and usage of Patient-Accessible Electronic Health Records (PAEHRs). The aim is to explore and understand possible changes in patients’ reasons for, and perceived value of, use. The study also addresses the quality of communication with healthcare and information types provided. METHODS The Swedish national surveys were conducted in 2016 and 2022. They collected data on patients' experiences with PAEHRs, including demographic information, reasons for using PAEHRs, and perceived impacts on communication with healthcare providers. Statistical analyses, including Chi-square tests, were used to compare responses between the two surveys. RESULTS The 2016 survey included responses from 2,587 patients, while the 2022 survey included 13,008 respondents. Key findings indicate an increase in the positive perception of PAEHRs over the six years. In 2022, 72.3% of respondents reported that PAEHRs supported communication with healthcare professionals, compared to 60.0% in 2016 (p < .001). The primary reason for using PAEHRs shifted from general interest in 2016 to prepare for healthcare visits in 2022. There was also a notable increase in patients valuing access to their lab test results, from 95.0% in 2016 to 97.8% in 2022 (p < .001). Demographic analysis revealed that among those taking part in the survey, a higher proportion of older adults and individuals with higher education were among the respondents in the 2022 survey, however, the differences were not statistically significant. CONCLUSIONS The study demonstrates that the overall highly positive patient attitude towards and usage of PAEHRs in 2016 persisted and was strengthened in 2022. The findings point to the growing importance of PAEHRs in enhancing patient engagement and communication with healthcare providers. This research contributes valuable insights into the evolving landscape of eHealth services and their impact on patient-centered care.

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.

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.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

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.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet