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.

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Patient accessible electronic health records have been launched in many countries, and generally, health-care professionals have had strong initial concerns related to the areas patient contact, documentation practices and quality of care. Especially, oncology care was discussed in media when launching patient accessible electronic health records in Sweden. However, few studies have investigated clinician-perceived effects several years after the launch. A survey covering these areas, as well as supposed effects for patients, was distributed to oncology health-care professionals 6 years after the launch of patient accessible electronic health records and answered by N = 176. Results show that patient accessible electronic health records have had small effects within the covered areas, and that the area most affected was documentation practices. Very few significant differences could be found between physicians and nurses. A comparison with results from interviews and surveys conducted shortly after the launch of patient accessible electronic health records clearly indicates that the experienced negative effects are not as big as originally feared.

The design of patient-centred e-health services embodies an inherent tension between the concerns of clinicians and those of patients. Clinicians' concerns are related to professional issues to do with diagnosing and curing disease in accordance with accepted medical standards. In contrast, patients' concerns typically relate to personal experience and quality of life issues. It is about their identity, their hopes, their fears and their need to maintain a meaningful life. This divergence of concerns presents a fundamental challenge for designers of patient-centred e-health services. We explore this challenge in the context of chronic illness and telecare. Based on insights from medical phenomenology as well as our own experience with designing an e-health service for patients with chronic heart disease, we emphasise the importanceand difficultyof aligning the concerns of patients and clinicians. To deal with this, we propose a set of concepts for analysing concerns related to the design of e-health services: A concern is (1) meaningful if it is relevant and makes sense to both patients and clinicians, (2) actionable if clinicians or patientsat least in principleare able to take appropriate action to deal with it, and (3) feasible if it is easy and convenient to do so within the organisational and social context. We conclude with a call for a more participatory and iterative approach to the design of patient-centred ehealth services.

This study explores patients’ perspectives on sharing their personal health data, which is traditionally shared through discussions with peers and relatives. However, other possibilities for sharing have emerged through the introduction of online services such as Patient Accessible Electronic Health Records (PAEHR). In this article, we investigate strategies that patients adopt in sharing their PAEHR. Data were collected through a survey with 2587 patients and through 15 semi-structured interviews with cancer patients. Results show that surprisingly few patients share their information, and that older patients and patients with lower educational levels share more frequently. A large majority of patients trust the security of the system when sharing despite the high sensitivity of health information. Finally, we discuss the design implications addressing identified problems when sharing PAEHR, as well as security and privacy issues connected to sharing.

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