BackgroundInternationally, 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.ObjectiveThe 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.MethodsA 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.ResultsOverall, 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.ConclusionsIn 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.

BackgroundRoles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients.ObjectiveThis qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians’ constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement.MethodsA total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed.ResultsTwo important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient’s role, lack of skills (technical or regarding medical jargon), motives to read, and patients’ characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care.ConclusionsLiterature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of “power” in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of “monitoring the doctor” but to make sense of the situation.

BackgroundUppsala County in Sweden launched an eHealth patient portal in 2012, which allows patients to access their medical records over the Internet. However, the launch of the portal was critically debated in the media. The professionals were strongly skeptical, and one reason was possible negative effects on their work environment. This study hence investigates the assumptions and perspectives of physicians to understand their framing of the patient portal in relation to their work environment.ObjectiveThe study uses the concept of technological frames to examine how physicians in different specialties make sense of the patient portal in relation to their work environment.MethodsA total of 12 semistructured interviews were conducted with physicians from different specialties. Interviews were transcribed and translated. A theoretically informed thematic analysis was performed.ResultsThe thematic analysis revealed 4 main themes: work tool, process, workload, and control. Physicians perceive medical records as their work tool, written for communication within health care only. Considering effects on work environment, the physicians held a negative attitude and expected changes, which would affect their work processes in a negative way. Especially the fact that patients might read their test results before the physician was seen as possibly harmful for patients and as an interference with their established work practices. They expected the occurrence of misunderstandings and needs for additional explanations, which would consequently increase their workload. Other perceptions were that the portal would increase controlling and monitoring of physicians and increase or create a feeling of mistrust from patients. Regarding benefits for the patients, most of the physicians believe there is only little value in the patient portal and that patients would mostly be worried and misunderstand the information provided.ConclusionsSupported by the study, we conclude: (1) The transfer of a paper-based health care process where patients read on paper into a digital process challenges current work practices and has consequences for the work environment. Mostly, this is explained by the changing positions between the physicians and the patient: the latter can drive the process, which reduces the physicians’ ability to guide the patient. (2) The physicians’ experiences were expressed as worries: patients would not understand the content of the record and become unnecessarily anxious from misunderstandings. The concerns are to some extent based on a generalized view of patients, which might disregard those, who already actively participate in health care. This study hence reveals a need to provide physicians with information about the values for patients from using patient portals. (3) A change of work practices may be beneficial to increase patient participation, but such changes should preferably be designed and discussed with physicians. However, the strong resistance from the physicians made this challenging when launching the...

Editor's Summary As early e‐health efforts progress, it is critical to step back to study their effectiveness and inform expanded implementation. The DOME project is a Swedish research initiative to examine the methods and implications of providing patients access to their own medical records and other e‐health services. The focus is on SUSTAINS, a patient access system established in 2012 in 11 European countries. Sweden's Uppsala county opened access to residents to view their electronic health records with provider notes, lab results, diagnoses and treatments in late 2012. Pre‐ and post‐implementation studies are being carried out through DOME and mixing with the public debate on benefits and drawbacks of easy online access to personal health information. Supporters and critics share concern for quality of care and data security. But advocates focus on better decisions by empowered patients, while detractors, including many healthcare providers, see patient anxiety resulting from insufficient information and lack of consultation. The DOME project is providing the opportunity to analyze all sides of expanded access to electronic health records.

Abstract.Many new public eHealth Services are now being developed. Often a conventional customer-vendor process is used, where the customer is a public authority, e.g. a county council, and the vendor a commercial actor, e.g. an IT development company. In this case study the engineering process regards a novel eHealth service aiming to provide patients with online access to their electronic health record. A complicating factor in conventional customervendor processes for public e-services is that "the future user could be anyone". In the light of best practice in Human-Computer Interaction, this study examines the joint effort of the customer and vendor when developing novel services for citizen use. The results include delimiting factors, recommendations for public authority customers and proposed new actions for the research agenda.