A Nordic Perspective on Patient Online Record Access and the European Health Data Space.

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.

Visit Experience and Fulfillment of Care Needs in Primary Care Differs for Video Visits Compared to In-person and Chat Visits.

BACKGROUND: There is a lack of research comparing patient experience and to what extent patients' care needs are fulfilled in telemedicine compared to in-person care. OBJECTIVE: To investigate if patient experience and fulfillment of care needs differ between video and chat visits with direct to consumer telemedicine providers compared to in-person visits. DESIGN: Cross-sectional study. PARTICIPANTS: Adults visiting a primary care physician in person or via chat or video in Region Stockholm, Sweden, October 2020-May 2021. MAIN MEASURES: Patient-reported visit experience and fulfillment of care needs. KEY RESULTS: The sample included 3315 patients who had an in-person (1950), video (844), or chat (521) visit. Response rates were 42% for in-person visitors and 41% for telemedicine visitors. Patients were 18-97 years old, mean age of 51 years, and 66% were female. In-person visitors reported the most positive patient experience ("To a very high degree" or "Yes, completely") for being listened to (64%), being treated with care (64%), and feeling trust and confidence in the health care professional (76%). Chat visitors reported the most positive patient experience for being given enough time (61%) and having care needs fulfilled during the care visit (76%). Video visitors had the largest proportion of respondents choosing "To a very low degree" or "No, not at all" for all visit experience measures. There were statistically significant differences in the distribution of visit experiences between in-person, video, and chat visits for all visit experience measures (P < 0.001). CONCLUSIONS: Video visits were associated with a more negative visit experience and lower fulfillment of care needs than in-person visits. Chat visits were associated with a similar patient experience and fulfillment of care needs as in-person visits. Chat visits may be a viable alternative to in-person visits for selected patients.

Individual Patient Factors Associated with the Use of Physical or Digital Primary Care in Sweden.

Introduction: Little is known about factors that influence patients' choice to use physical or digital primary care. This study aimed to compare self-rated health, internet habits, and what patients deem important when choosing health care between users of physical and digital primary health care. Methods: We recruited 2,716 adults visiting one of six physical or four digital primary health care providers in Stockholm, Sweden, October 2020 to May 2021. Participants answered a questionnaire with questions about sociodemography, self-rated health, internet habits, and what they considered important when seeking care. We used logistic regression and estimated odds ratios (ORs) for choosing digital care. Results: Digital users considered themselves healthier and used the internet more, compared with physical users (p < 0.001). Competence of health care staff was the most important factor when seeking care to both physical and digital users (90% and 78%, respectively). Patients considering it important to avoid leaving home were more likely to seek digital care (OR 29.55, 95% confidence interval [CI] 12.65-69.06), while patients valuing continuity were more likely to seek physical care (OR 0.25, 95% CI 0.19-0.32). These factors were significant also when adjusting for self-rated health and sociodemographic characteristics. Conclusion: What patients considered important when seeking health care was associated with what type of care they sought. Patient preferences should be considered when planning health care to optimize resource allocation.

Primary Healthcare Professionals' Improvement Suggestions for the Patient Accessible Health Record.

Patients' online record access is a worldwide phenomenon, where Sweden is one of the pioneers in actual countrywide implementation. Healthcare professionals (HCPs) have previously raised usability issues with e-health systems and proposed several solutions, yet no studies have explored PAEHRs from this perspective. The aim of this study was to describe primary HCPs' suggestions on how the Swedish online record could be improved. They (n=14) were asked what they would like to improve with the system to increase usability and usefulness for patients or for themselves. Suggestions covered expanding what patients could view, simplification of the service for both the patients and themselves, adding feedback functions, and limiting access to only signed records.

The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia.

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.

To connect or not connect: long-term adoption of video consultations, and reasons for discontinuing use.

INTRODUCTION: This study investigates factors related to long-term and short-term adoption of video consultations (VCs) and reasons for discontinuing use among primary care patients. METHODS: A sample of primary care patients using VCs with healthcare providers were invited to take a survey in a cross-sectional study. Participants were asked about their intention to continue to have video consultations in the future, and those indicating no intention to use VCs in the future (short-term adopters) were asked about their reasons for this. Prevalence and statistical differences between long-term and short-term adopters were investigated. RESULTS: There were several statistically significant differences between long-term and short-term adopters (76% vs. 24%). Long-term adopters consisted of more middle-aged individuals (35-54 years) and the majority worked full-time (56%). They had more positive opinions of VCs and used VCs and video meetings for other purposes to a larger extent. They chose VCs because of the lack of time to go to the healthcare centre and because their provider offered them. The most common reason for discontinuing use was a preference for face-to-face consultations, with the youngest age group (16-34 years) reporting this to a larger extent. DISCUSSION: Younger and older age groups may be less likely to continue the use of VCs, potentially preserving the digital divide. Additionally, disparities in using similar technologies might contribute to the digital divide. Moreover, convenience, positive opinions of VCs, and experience with VCs were related to long-term adoption. Further studies are needed to explore non-use, age's influence, and address usability issues.

Patients' Experiences of Initiating Video Consultations.

Implementation and adoption of video consultations (VCs) in healthcare are not straightforward. Experiences of initiating a VC could increase our understanding of adoption by patients. This study aims to report patients' experiences of installing and booking a VC in primary care. Most people found it easy to find and install the VC application. Those with a higher self-reported ability and habit of using digital services and the internet found it easier than those reporting lower ability and habit. About half of our respondents had booked their recent VC themselves, most of whom had done so through a telephone call or the application "Alltid Öppet". The booking process was perceived to be easy by most but more difficult compared to installation. The easy installation process might have led to higher adoption by older people. Nevertheless, during implementation more support should be provided to people with lower digital service and internet use abilities and habits as they might find VC set-up more difficult. More attention should be given to the booking process as it may be a barrier potentially influencing adoption.

Patients' Introduction to Online Video Consultations in Primary Healthcare.

This study aimed to illustrate ways primary healthcare patients were introduced to video consultations via the public online care application Alltid öppet in Region Stockholm, Sweden. The majority of patients were introduced to this by their providers or other healthcare professionals.

Healthcare Professionals' Experiences of the Work Environment After Patients' Access to Their Electronic Health Records - A Qualitative Study in Primary Care.

For healthcare personnel, the work environment is already challenging, and when eHealth systems are introduced they are often considered to further add to the complexity. This paper investigates the impact of patients' access to their electronic health records on healthcare professionals' work environment in a primary care setting in Sweden. A work environment theory-driven analysis, focusing on perceived demands, control and support, was conducted on 14 semi-structured interviews of different primary care professionals. The professionals expressed a slight increase in demands, loss of control and some increase and decrease of support. This study discusses insights on how patients' access to health records can have an impact on healthcare professionals' work environment.

Determinants for the use and de-implementation of low-value care in health care: a scoping review.

BACKGROUND: A considerable proportion of interventions provided to patients lack evidence of their effectiveness. This implies that patients may receive ineffective, unnecessary or even harmful care. However, despite some empirical studies in the field, there has been no synthesis of determinants impacting the use of low-value care (LVC) and the process of de-implementing LVC. AIM: The aim was to identify determinants influencing the use of LVC, as well as determinants for de-implementation of LVC practices in health care. METHODS: A scoping review was performed based on the framework by Arksey and O'Malley. We searched four scientific databases, conducted snowball searches of relevant articles and hand searched the journal Implementation Science for peer-reviewed journal articles in English. Articles were included if they were empirical studies reporting on determinants for the use of LVC or de-implementation of LVC. The abstract review and the full-text review were conducted in duplicate and conflicting decisions were discussed until consensus was reached. Data were charted using a piloted data charting form and the determinants were inductively coded and categorised in an iterative process conducted by the project group. RESULTS: In total, 101 citations were included in the review. Of these, 92 reported on determinants for the use of LVC and nine on determinants for de-implementation. The studies were conducted in a range of health care settings and investigated a variety of LVC practices with LVC medication prescriptions, imaging and screening procedures being the most common. The identified determinants for the use of LVC as well as for de-implementation of LVC practices broadly concerned: patients, professionals, outer context, inner context, process and evidence and LVC practice. The results were discussed in relation to the Consolidated Framework for Implementation Research. CONCLUSION: The identified determinants largely overlap with existing implementation frameworks, although patient expectations and professionals' fear of malpractice appear to be more prominent determinants for the use and de-implementation of LVC. Thus, existing implementation determinant frameworks may require adaptation to be transferable to de-implementation. Strategies to reduce the use of LVC should specifically consider determinants for the use and de-implementation of LVC. REGISTRATION: The review has not been registered.