Isabella Scandurra

Background: Patients are increasingly being offered online record access (ORA) through patient-accessible electronic health records (PAEHRs), but implementation is often met with resistance from health care professionals (HCPs). Experiences from previous implementations may provide important insights into potential barriers and facilitators. Objective: This study aimed to investigate the factors influencing the implementation of the Swedish PAEHR system in primary care from the perspectives of HCPs. Methods: We conducted 14 semistructured interviews with a diverse group of HCPs shortly after the implementation of the Swedish PAEHR system. The interviews were analyzed using the Consolidated Framework for Implementation Research (CFIR) and content analysis, identifying key themes related to PAEHR implementation. Results: The analysis identified several potential factors influencing the implementation of the Swedish PAEHR system. According to the HCPs, the PAEHR system was flawed but also flexible. The HCPs described working in a complex and imperfect organization, which nonetheless had an existing structure, support, and established communication with patients. They also described nondocumentation-related use of the electronic health record system. Moreover, they reported dealing with a complicated patient group with varying needs and high expectations. The HCPs expressed that they worked in a patient-centered way and with patient engagement. The HCPs could see both the advantages and disadvantages of the PAEHR system and had some concerns. There were mixed views of the extent of the change, where some felt patient ORA would not affect their work at all and others expected a substantial impact. Some HCPs had experience using the PAEHR system themselves, while some lacked knowledge and interest. Furthermore, the implementation process was perceived as long and uneventful, with fragmented communication, where existing communication activities were used. The HCPs also reported receiving some information and education about PAEHRs outside the organization. The HCPs had limited awareness of how patients were introduced to the PAEHR system. Conclusions: This study underscores the importance of having a usable electronic health record system and addressing organizational issues, such as issues with the work environment, for optimal implementation of eHealth services such as the PAEHR system. It also highlights the importance of HCPs’ views and experiences with their patients, and their perceptions and attitudes toward the intervention. Additionally, this study stresses the importance of effective implementation processes and communication strategies for both HCPs and patients.

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: With the increasing implementation of patient online record access (ORA), various approaches to access to minors’ electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child’s care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied. Objective: This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden. Methods: We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis. Results: The survey population included 88 individuals (adolescents: n=31, 35%; parents: n=57, 65%). Interviews were completed by 8 (26%) of the 31 adolescents and 17 (30%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91%) were critical of the access gap, and most of the adolescents (20/31, 65%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents’ and parents’ views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change). Conclusions: In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations.

Electronic health records (EHR) are continuously evolving to better meet user needs, but the process is complicated by healthcare professionals and patients often disagreeing on priority areas of development. While this may be due to differences between professional and personal experiences, little is known whether specialist healthcare knowledge also affects user needs when using EHRs as patients. To investigate this, we analysed the responses of patient users in Sweden from the NORDeHEALTH 2022 Patient Survey. In the survey, respondents indicated whether they had healthcare education, and rated how useful various EHR information types and functions are. Average ratings were comparable between the two user groups, but significant differences were observed for information types and functions. Those without healthcare education rated the ability to point out errors as most useful, while those with healthcare education — the ability to contribute health information. The findings suggest healthcare education can influence users’ EHR preferences.

Background: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland, Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-country analysis has not been developed. Objective: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use. Methods: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. Results: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared with patients; human-computer interface; people; workflow and communication; the health care organization’s internal policies, procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the health care system context dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries. Conclusions: This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs.

BACKGROUND Patients are increasingly being offered online record access (ORA) through patient-accessible electronic health records (PAEHRs), but implementation is often met with resistance from health care professionals (HCPs). Experiences from previous implementations may provide important insights into potential barriers and facilitators. OBJECTIVE This study aimed to investigate the factors influencing the implementation of the Swedish PAEHR system in primary care from the perspectives of HCPs. METHODS We conducted 14 semistructured interviews with a diverse group of HCPs shortly after the implementation of the Swedish PAEHR system. The interviews were analyzed using the Consolidated Framework for Implementation Research (CFIR) and content analysis, identifying key themes related to PAEHR implementation. RESULTS The analysis identified several potential factors influencing the implementation of the Swedish PAEHR system. According to the HCPs, the PAEHR system was flawed but also flexible. The HCPs described working in a complex and imperfect organization, which nonetheless had an existing structure, support, and established communication with patients. They also described nondocumentation-related use of the electronic health record system. Moreover, they reported dealing with a complicated patient group with varying needs and high expectations. The HCPs expressed that they worked in a patient-centered way and with patient engagement. The HCPs could see both the advantages and disadvantages of the PAEHR system and had some concerns. There were mixed views of the extent of the change, where some felt patient ORA would not affect their work at all and others expected a substantial impact. Some HCPs had experience using the PAEHR system themselves, while some lacked knowledge and interest. Furthermore, the implementation process was perceived as long and uneventful, with fragmented communication, where existing communication activities were used. The HCPs also reported receiving some information and education about PAEHRs outside the organization. The HCPs had limited awareness of how patients were introduced to the PAEHR system. CONCLUSIONS This study underscores the importance of having a usable electronic health record system and addressing organizational issues, such as issues with the work environment, for optimal implementation of eHealth services such as the PAEHR system. It also highlights the importance of HCPs’ views and experiences with their patients, and their perceptions and attitudes toward the intervention. Additionally, this study stresses the importance of effective implementation processes and communication strategies for both HCPs and patients.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: With the increasing implementation of patient online record access (ORA), various approaches to access to minors’ electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child’s care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied. Objective: This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden. Methods: We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis. Results: The survey population included 88 individuals (adolescents: n=31, 35%; parents: n=57, 65%). Interviews were completed by 8 (26%) of the 31 adolescents and 17 (30%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91%) were critical of the access gap, and most of the adolescents (20/31, 65%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents’ and parents’ views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change). Conclusions: In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations.

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.

Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.