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1.
  • Dudkina, Anna, et al. (författare)
  • Patient Input into the Electronic Health Record : Co-Designing Solutions with Patients and Healthcare Professionals.
  • 2024
  • Ingår i: Studies in Health Technology and Informatics. - 0926-9630 .- 1879-8365. ; 316, s. 1477-1481
  • Tidskriftsartikel (refereegranskat)abstract
    • Patient-generated health data (PGHD) is the person's health-related data collected outside the clinical environment. Integrating this data into the electronic health record (EHR) supports better patient-provider communication and shared decision-making, empowering patients to actively manage their health conditions. In this study, we investigated the essential features needed for patients and healthcare providers to effectively integrate PGHD functionality into the EHR system. Through our collaborative design approach involving healthcare professionals (HCPs) and patients, we developed a prototype and suggestion, using Estonia as a model, which is the ideal approach for collecting and integrating PGHD into the EHR.
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2.
  • Blease, Charlotte, et al. (författare)
  • Experiences and opinions of general practitioners with patient online record access : an online survey in England
  • 2024
  • Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 14:1
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: To describe the experiences and opinions of general practitioners (GPs) in England regarding patients having access to their full online GP health records.DESIGN: Convenience sample, online survey.PARTICIPANTS: 400 registered GPs in England.MAIN OUTCOME MEASURES: Investigators measured GPs' experiences and opinions about online record access (ORA), including patient care and their practice.RESULTS: A total of 400 GPs from all regions of England responded. A minority (130, 33%) believed ORA was a good idea. Most GPs believed a majority of patients would worry more (364, 91%) or find their GP records more confusing than helpful (338, 85%). Most GPs believed a majority of patients would find significant errors in their records (240, 60%), would better remember their care plan (280, 70%) and feel more in control of their care (243, 60%). The majority believed they will/already spend more time addressing patients' questions outside of consultations (357, 89%), that consultations will/already take significantly longer (322, 81%) and that they will be/already are less candid in their documentation (289, 72%) after ORA. Nearly two-thirds of GPs believed ORA would increase their litigation (246, 62%).CONCLUSIONS: Similar to clinicians in other countries, GPs in our sample were sceptical of ORA, believing patients would worry more and find their records more confusing than helpful. Most GPs also believed the practice would exacerbate work burdens. However, the majority of GPs in this survey also agreed there were multiple benefits to patients having online access to their primary care health records. The findings of this survey also contribute to a growing body of contrastive research from countries where ORA is advanced, demonstrating clinicians are sceptical while studies indicate patients appear to derive multiple benefits.
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3.
  • Blease, Charlotte, et al. (författare)
  • Machine learning in clinical psychology and psychotherapy education : a mixed methods pilot survey of postgraduate students at a Swiss university
  • 2021
  • Ingår i: Frontiers in Public Health. - : Frontiers. - 2296-2565. ; 9
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: There is increasing use of psychotherapy apps in mental health care.Objective: This mixed methods pilot study aimed to explore postgraduate clinical psychology students' familiarity and formal exposure to topics related to artificial intelligence and machine learning (AI/ML) during their studies.Methods: In April-June 2020, we conducted a mixed-methods online survey using a convenience sample of 120 clinical psychology students enrolled in a two-year Masters' program at a Swiss University.Results: In total 37 students responded (response rate: 37/120, 31%). Among respondents, 73% (n = 27) intended to enter a mental health profession, and 97% reported that they had heard of the term “machine learning.” Students estimated 0.52% of their program would be spent on AI/ML education. Around half (46%) reported that they intended to learn about AI/ML as it pertained to mental health care. On 5-point Likert scale, students “moderately agreed” (median = 4) that AI/M should be part of clinical psychology/psychotherapy education. Qualitative analysis of students' comments resulted in four major themes on the impact of AI/ML on mental healthcare: (1) Changes in the quality and understanding of psychotherapy care; (2) Impact on patient-therapist interactions; (3) Impact on the psychotherapy profession; (4) Data management and ethical issues.Conclusions: This pilot study found that postgraduate clinical psychology students held a wide range of opinions but had limited formal education on how AI/ML-enabled tools might impact psychotherapy. The survey raises questions about how curricula could be enhanced to educate clinical psychology/psychotherapy trainees about the scope of AI/ML in mental healthcare.
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5.
  • Blease, Charlotte, et al. (författare)
  • Patient Online Record Access in English Primary Care : Qualitative Survey Study of General Practitioners’ Views
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: In 2022, NHS England announced plans to ensure that all adult primary care patients in England would have full online access to new data added to their general practitioner (GP) record. However, this plan has not yet been fully implemented. Since April 2020, the GP contract in England has already committed to offering patients full online record access on a prospective basis and on request. However, there has been limited research into UK GPs’ experiences and opinions about this practice innovation. Objective: This study aimed to explore the experiences and opinions of GPs in England about patients’ access to their full web-based health record, including clinicians’ free-text summaries of the consultation (so-called “open notes”). Methods: In March 2022, using a convenience sample, we administered a web-based mixed methods survey of 400 GPs in the United Kingdom to explore their experiences and opinions about the impact on patients and GPs’ practices to offer patients full online access to their health records. Participants were recruited using the clinician marketing service Doctors.net.uk from registered GPs currently working in England. We conducted a qualitative descriptive analysis of written responses (“comments”) to 4 open-ended questions embedded in a web-based questionnaire. Results: Of 400 GPs, 224 (56%) left comments that were classified into 4 major themes: increased strain on GP practices, the potential to harm patients, changes to documentation, and legal concerns. GPs believed that patient access would lead to extra work for them, reduced efficiency, and increased burnout. The participants also believed that access would increase patient anxiety and incur risks to patient safety. Experienced and perceived documentation changes included reduced candor and changes to record functionality. Anticipated legal concerns encompassed fears about increased litigation risks and lack of legal guidance to GPs about how to manage documentation that would be read by patients and potential third parties. Conclusions: This study provides timely information on the views of GPs in England regarding patient access to their web-based health records. Overwhelmingly, GPs were skeptical about the benefits of access both for patients and to their practices. These views are similar to those expressed by clinicians in other countries, including Nordic countries and the United States before patient access. The survey was limited by the convenience sample, and it is not possible to infer that our sample was representative of the opinions of GPs in England. More extensive, qualitative research is required to understand the perspectives of patients in England after experiencing access to their web-based records. Finally, further research is needed to explore objective measures of the impact of patient access to their records on health outcomes, clinician workload, and changes to documentation.
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6.
  • Blease, Charlotte, et al. (författare)
  • Preparing Patients and Clinicians for Open Notes in Mental Health : Qualitative Inquiry of International Experts
  • 2021
  • Ingår i: JMIR Mental Health. - : JMIR Publications. - 2368-7959. ; 8:4
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients.OBJECTIVE: The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care.METHODS: In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts' written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations.RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes.CONCLUSIONS: This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.
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7.
  • Blease, Charlotte, et al. (författare)
  • The benefits and harms of open notes in mental health : A Delphi survey of international experts
  • 2021
  • Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 16:10
  • Tidskriftsartikel (refereegranskat)abstract
    • IMPORTANCE: As of April 5, 2021, as part of the 21st Century Cures Act, new federal rules in the U.S. mandate that providers offer patients access to their online clinical records.OBJECTIVE: To solicit the view of an international panel of experts on the effects on mental health patients, including possible benefits and harms, of accessing their clinical notes.DESIGN: An online 3-round Delphi poll.SETTING: Online.PARTICIPANTS: International experts identified as clinicians, chief medical information officers, patient advocates, and informaticians with extensive experience and/or research knowledge about patient access to mental health notes.MAIN OUTCOMES, AND MEASURES: An expert-generated consensus on the benefits and risks of sharing mental health notes with patients.RESULTS: A total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items: 42 potential benefits, and 48 potential harms. A total of 56 of 70 (80%) experts responded to Round 2, and 52 of 56 (93%) responded to Round 3. Consensus was reached on 65 of 88 (74%) of survey items. There was consensus that offering online access to mental health notes could enhance patients' understanding about their diagnosis, care plan, and rationale for treatments, and that access could enhance patient recall and sense of empowerment. Experts also agreed that blocking mental health notes could lead to greater harms including increased feelings of stigmatization. However, panelists predicted there could be an increase in patients demanding changes to their clinical notes, and that mental health clinicians would be less detailed/accurate in documentation.CONCLUSIONS AND RELEVANCE: This iterative process of survey responses and ratings yielded consensus that there would be multiple benefits and few harms to patients from accessing their mental health notes. Questions remain about the impact of open notes on professional autonomy, and further empirical work into this practice innovation is warranted.
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8.
  • Blease, Charlotte, et al. (författare)
  • US primary care in 2029 : A Delphi survey on the impact of machine learning
  • 2020
  • Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:10
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: To solicit leading health informaticians' predictions about the impact of AI/ML on primary care in the US in 2029.Design: A three-round online modified Delphi poll.Participants: Twenty-nine leading health informaticians.Methods: In September 2019, health informatics experts were selected by the research team, and invited to participate the Delphi poll. Participation in each round was anonymous, and panelists were given between 4-8 weeks to respond to each round. In Round 1 open-ended questions solicited forecasts on the impact of AI/ML on: (1) patient care, (2) access to care, (3) the primary care workforce, (4) technological breakthroughs, and (5) the long-future for primary care physicians. Responses were coded to produce itemized statements. In Round 2, participants were invited to rate their agreement with each item along 7-point Likert scales. Responses were analyzed for consensus which was set at a predetermined interquartile range of ≤ 1. In Round 3 items that did not reach consensus were redistributed.Results: A total of 16 experts participated in Round 1 (16/29, 55%). Of these experts 13/16 (response rate, 81%), and 13/13 (response rate, 100%), responded to Rounds 2 and 3, respectively. As a result of developments in AI/ML by 2029 experts anticipated workplace changes including incursions into the disintermediation of physician expertise, and increased AI/ML training requirements for medical students. Informaticians also forecast that by 2029 AI/ML will increase diagnostic accuracy especially among those with limited access to experts, minorities and those with rare diseases. Expert panelists also predicted that AI/ML-tools would improve access to expert doctor knowledge.Cconclusions: This study presents timely information on informaticians' consensus views about the impact of AI/ML on US primary care in 2029. Preparation for the near-future of primary care will require improved levels of digital health literacy among patients and physicians.
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9.
  • Bärkås, Annika, et al. (författare)
  • Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients : Results from a Nationwide Survey in Sweden
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC. OBJECTIVE: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups. METHODS: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square. RESULTS: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were "very important," but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups. CONCLUSIONS: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records. 
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10.
  • Bärkås, Annika, et al. (författare)
  • Patients' Experiences of Demanded Access to Online Health Records
  • 2024
  • Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1424-1425
  • Tidskriftsartikel (refereegranskat)abstract
    • Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR.
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11.
  • Bärkås, Annika, et al. (författare)
  • Patients' Experiences of Unwanted Access to Their Online Health Records
  • 2023
  • Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 302, s. 356-357, s. 356-357
  • Tidskriftsartikel (refereegranskat)abstract
    • Patient-Accessible Electronic Health Records (PAEHR) are particularly disputed in mental healthcare. We aim to explore if there is any association between patients having a mental health condition and someone unwanted seeing their PAEHR. A chi-square test showed a statistically significant association between group belonging and experiences of someone unwanted seeing their PAEHR.
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12.
  • Fagerlund, A. J., et al. (författare)
  • Experiences from patients in mental healthcare accessing their electronic health records : Results from a cross-national survey in Estonia, Finland, Norway, and Sweden
  • 2024
  • Ingår i: BMC Psychiatry. - : BioMed Central (BMC). - 1471-244X. ; 24:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Patients’ online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users’ overall experiences with national PAEHR services. Methods: The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users’ experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data. Results: 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one in ten (10.7%) noted that unauthorised individuals had seen their health information. Conclusions: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences.
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13.
  • Hagström, Josefin, et al. (författare)
  • Adolescents Identifying Errors and Omissions in Their Electronic Health Records : A National Survey
  • 2023
  • Ingår i: Caring is Sharing. - : IOS Press. - 9781643683881 - 9781643683898 ; 302, s. 242-246
  • Konferensbidrag (refereegranskat)abstract
    • Patient accessible electronic health records (PAEHRs) have been proposed as a means to improve patient safety and documentation quality, as patients become an additional source to detect mistakes in the records. In pediatric care, healthcare professionals (HCP) have noted a benefit of parent proxy users correcting errors in their child's records. However, the potential of adolescents has so far been overlooked, despite reports of reading records to ensure accuracy. The present study examines errors and omissions identified by adolescents, and whether patients reported following up with HCPs. Survey data was collected during three weeks in January and February 2022 via the Swedish national PAEHR. Of 218 adolescent respondents, 60 reported having found an error (27.5%) and 44 (20.2%) had found missing information. Most adolescents did not take any action upon identifying an error or an omission (64.0%). Omissions were more often perceived as serious than errors. These findings call for development of policy and PAEHR design that facilitates reports of errors and omissions for adolescents, which could both improve trust and support the individual's transition into an involved and engaged adult patient.
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14.
  • Hägglund, Maria, Lektor, 1975-, et al. (författare)
  • A Nordic Perspective on Patient Online Record Access and the European Health Data Space
  • 2024
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26:1
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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16.
  • Hägglund, Maria, et al. (författare)
  • NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record Access
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
    • The Nordic countries are forerunners in online record access (ORA) which has now become widespread. The importance of accessible and structured health data has also been highlighted by policymakers internationally. To ensure the full realization of ORA’spotential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, technical, 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, and introduce a Nordic-led research project that carries out the first of its kind, large-scale international investigation of patients’ ORA; NORDeHEALTH. We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records (EHRs). This will have implications within Europe and globally as it will further extend the boundaries for accessing and using EHRs for primary and secondary data use. Research such as that led by the NORDeHEALTH project is essential in guiding the design and implementation of solutions to meet the requirements of the EHDS proposal. Further international collaboration and research are needed to ensure that socio-technical and contextual factors are considered to ensure successful and secure implementation.
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17.
  • Hägglund, Maria, Lektor, 1975-, et al. (författare)
  • The NORDeHEALTH 2022 Patient Survey : Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • 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. 
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18.
  • Kharko, Anna, et al. (författare)
  • Mapping Patients' Online Record Access Worldwide : Preliminary Results from an International Survey of Healthcare Experts
  • 2024
  • Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 114-118
  • Tidskriftsartikel (refereegranskat)abstract
    • While research on the effects of patient access to health records is increasing, a basic understanding of the spread of patient-accessible electronic health records worldwide is lacking. In this survey of healthcare experts with professional and personal experience from 29 countries, we explored the state of patient online record access (ORA). We asked participants whether ORA exists in their country and which information is available through it. Experts in all polled countries reported having some national access to health records, with 6 (21%) countries providing exclusively paper-based records and 23 (79%) countries having ORA. Overview of test/lab results and prescription/medication lists were the most commonly available information. Free-text clinical notes were accessible in less than half of the surveyed countries (12, 41%). We will continue to map the state of patient ORA, focusing on traditionally underrepresented countries.
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19.
  • Kharko, Anna, et al. (författare)
  • Nocebo effects from clinical notes : reason for action, not opposition for clinicians of patients with medically unexplained symptoms
  • 2023
  • Ingår i: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 49:1, s. 24-25
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
    • In her paper, ‘Sharing online clinical notes with patients: implications for nocebo effects and health equity’, Blease bridges findings from two research fields to describe possible unintended consequences of providing patients access to clinical notes.1 She explains how nocebo effects, genuine psychological and physiological reactions following negative expectations, may arise after patients read such notes. Blease emphasises that the likelihood of nocebo may be greater for those patient groups who experience stigmatisation in healthcare. We argue that this is the case for patients with so-called medically unexplained symptoms (MUSs) and that clinicians who work with them should consider nocebo but not for the reasons they may think.MUS is a term used to refer to persistent physical symptoms which cannot be fully or reliably attributed to a structural pathology. They include common symptoms such as chronic or recurrent pain in joints and muscles, fatigue, paresthesia or digestive issues. MUS may persist indefinitely and vary in severity, often accompanied by chronic psychological distress such as anxiety and depression. It is estimated that as many as half of the patients in general practice have at least one MUS.2 Sometimes, MUSs are appraised jointly and receive a formal diagnosis. Depending on …
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20.
  • Kharko, Anna, et al. (författare)
  • Open notes in psychotherapy : An exploratory mixed methods survey of psychotherapy students in Switzerland
  • 2024
  • Ingår i: Digital Health. - : Sage Publications. - 2055-2076. ; 10
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundIn a growing number of countries, patients are offered access to their full online clinical records, including the narrative reports written by clinicians (the latter, referred to as “open notes”). Even in countries with mature patient online record access, access to psychotherapy notes is not mandatory. To date, no research has explored the views of psychotherapy trainees about open notes.ObjectiveThis study aimed to explore the opinions of psychotherapy trainees in Switzerland about patients’ access to psychotherapists’ free-text summaries.MethodsWe administered a web-based mixed methods survey to 201 psychotherapy trainees to explore their familiarity with and opinions about the impact on patients and psychotherapy practice of offering patients online access to their psychotherapy notes. Descriptive statistics were used to analyze the 42-item survey, and qualitative descriptive analysis was employed to examine written responses to four open-ended questions.ResultsSeventy-two (35.8%) trainees completed the survey. Quantitative results revealed mixed views about open notes. 75% agreed that, in general open notes were a good idea, and 94.1% agreed that education about open notes should be part of psychotherapy training. When considering impact on patients and psychotherapy, four themes emerged: (a) negative impact on therapy; (b) positive impact on therapy; (c) impact on patients; and (d) documentation. Students identified concerns related to increase in workload, harm to the psychotherapeutic relationship, and compromised quality of records. They also identified many potential benefits including better patient communication and informed consent processes. In describing impact on different therapy types, students believed that open notes might have differential impact depending on the psychotherapy approaches.ConclusionsSharing psychotherapy notes is not routine but is likely to expand. This mixed methods study provides timely insights into the views of psychotherapy trainees regarding the impact of open notes on patient care and psychotherapy practice.
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21.
  • Kujala, Sari, et al. (författare)
  • Benchmarking usability of patient portals in Estonia, Finland, Norway, and Sweden
  • 2024
  • Ingår i: International Journal of Medical Informatics. - : Elsevier. - 1386-5056 .- 1872-8243. ; 181
  • Tidskriftsartikel (refereegranskat)abstract
    • INTRODUCTION: Poor usability is a barrier to widespread adoption of electronic health records (EHR). Providing good usability is especially challenging in the health care context, as there is a wide variety of patient users. Usability benchmarking is an approach for improving usability by evaluating and comparing the strength and weaknesses of systems. The main purpose of this study is to benchmark usability of patient portals across countries. METHODS: A mixed-methods survey approach was applied to benchmark the national patient portals offering patient access to EHR in Estonia, Finland, Norway, and Sweden. These Nordic countries have similar public healthcare systems, and they are pioneers in offering patients access to EHR for several years. In a survey of 29,334 patients, both patients' quantitative ratings of usability and their qualitative descriptions of very positive and very negative peak experiences of portal use were collected. RESULTS: The usability scores ranged from good to fair level of usability. The narratives of very positive and very negative experiences included the benefits of the patient portals and experienced usability issues. The regression analysis of results showed that very positive and negative experiences of patient portal use explain 19-35% of the variation of usability scores in the four countries. The percentage of patients who reported very positive or very negative experiences in each country was unrelated to the usability scores across countries. CONCLUSIONS: The survey approach could be used to evaluate usability with a wide variety of users and it supported learning from comparison across the countries. The combination of quantitative and qualitative data provided an approximation of the level of the perceived usability, and identified usability issues to be improved and useful features that patients appreciate. Further work is needed to improve the comparability of the varied samples across countries. 
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22.
  • Meier-Diedrich, Eva, et al. (författare)
  • Changes in Documentation Due to Patient Access to Electronic Health Records : Protocol for a Scoping Review
  • 2023
  • Ingår i: JMIR Research Protocols. - : JMIR Publications. - 1929-0748. ; 12
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Internationally, patient-accessible electronic health records (PAEHRs) are increasingly being implemented. Despite reported benefits to patients, the innovation has prompted concerns among health care professionals (HCPs), including the possibility that access incurs a “dumbing down” of clinical records. Currently, no review has investigated empirical evidence of whether and how documentation changes after introducing PAEHRs.Objective: This paper presents the protocol for a scoping review examining potential subjective and objective changes in HCPs documentation after using PAEHRs.Methods: This scoping review will be carried out based on the framework of Arksey and O’Malley. Several databases will be used to conduct a literature search (APA PsycInfo, CINAHL, PubMed, and Web of Science Core Collection). Authors will participate in screening identified papers to explore the research questions: How do PAEHRs affect HCPs’ documentation practices? and What subjective and objective changes to the clinical notes arise after patient access? Only studies that relate to actual use experiences, and not merely prior expectations about PAEHRs, will be selected in the review. Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The Mixed Methods Appraisal Tool will be used to assess the quality of the studies included.Results: The results from this scoping review will be presented as a narrative synthesis structured along the key themes of the corpus of evidence. Additional data will be prepared in charts or tabular format. We anticipate the results to be presented in a scoping review at a later date. They will be disseminated at scientific conferences and through publication in a peer-reviewed journal.Conclusions: This is the first scoping review that considers potential change in documentation after implementation of PAEHRs. The results can potentially help affirm or refute prior opinions and expectations among various stakeholders about the use of PAEHRs and thereby help to address uncertainties. Results may help to provide guidance to clinicians in writing notes and thus have immediate practical relevance to care. In addition, the review will help to identify any substantive research gaps in this field of research. In the longer term, our findings may contribute to the development of shared documentation guidelines, which in turn are central to improving patient communication and safety. International Registered Report Identifier (IRRID): PRR1-10.2196/46722
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23.
  • Simola, Saija, et al. (författare)
  • Patients’ Experiences of a National Patient Portal and Its Usability : Cross-Sectional Survey Study
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Patient portals not only provide patients with access to electronic health records (EHRs) and other digital health services, such as prescription renewals, but they can also improve patients’ self-management, engagement with health care professionals (HCPs), and care processes. However, these benefits depend on patients’ willingness to use patient portals and, ultimately, their experiences with the usefulness and ease of use of the portals. Objective: This study aimed to investigate the perceived usability of a national patient portal and the relationship of patients’ very positive and very negative experiences with perceived usability. The study was aimed to be the first step in developing an approach for benchmarking the usability of patient portals in different countries. Methods: Data were collected through a web-based survey of the My Kanta patient portal’s logged-in patient users in Finland from January 24, 2022, to February 14, 2022. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale (SUS) score. Open-ended questions asked the patients about their positive and negative experiences with the patient portal. The statistical analysis included multivariate regression, and the experience narratives were analyzed using inductive content analysis. Results: Of the 1,262,708 logged-in patient users, 4719 responded to the survey, giving a response rate of 0.37%. The patient portal’s usability was rated as good, with a mean SUS score of 74.3 (SD 14.0). Reporting a very positive experience with the portal was positively associated with perceived usability (β=.51; P<.001), whereas reporting a very negative experience was negatively associated with perceived usability (β=−1.28; P<.001). These variables explained 23% of the variation in perceived usability. The information provided and a lack of information were the most common positive and negative experiences. Furthermore, specific functionalities, such as prescription renewal and the ease of using the patient portal, were often mentioned as very positive experiences. The patients also mentioned negative emotions, such as anger and frustration, as part of their very negative experiences. Conclusions: The study offers empirical evidence about the significant role of individual experiences when patients are evaluating the usability of patient portals. The results suggest that positive and negative experiences provide relevant information that can be used for improving the patient portal’s usability. Usability should be improved so that patients receive information efficiently, easily, and quickly. Respondents would also appreciate interactive features in the patient portal. 
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24.
  • Wang, Bo, et al. (författare)
  • Users’ Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care : Cross-Sectional Study
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Patient-accessible electronic health records (PAEHRs) hold promise for empowering patients, but their impact may vary between mental and somatic health care. Medical professionals and ethicists have expressed concerns about the potential challenges of PAEHRs for patients, especially those receiving mental health care. OBJECTIVE: This study aims to investigate variations in the experiences of online access to electronic health records (EHRs) among persons receiving mental and somatic health care, as well as to understand how these experiences and perceptions vary among those receiving mental health care at different levels of point of care. METHODS: Using Norwegian data from the NORDeHEALTH 2022 Patient Survey, we conducted a cross-sectional descriptive analysis of service use and perceptions of perceived mistakes, omissions, and offensive comments by mental and somatic health care respondents. Content analysis was used to analyze free-text responses to understand how respondents experienced the most serious errors in their EHR. RESULTS: Among 9505 survey participants, we identified 2008 mental health care respondents and 7086 somatic health care respondents. A higher percentage of mental health care respondents (1385/2008, 68.97%) reported that using PAEHR increased their trust in health care professionals compared with somatic health care respondents (4251/7086, 59.99%). However, a significantly larger proportion (P<.001) of mental health care respondents (976/2008, 48.61%) reported perceiving errors in their EHR compared with somatic health care respondents (1893/7086, 26.71%). Mental health care respondents also reported significantly higher odds (P<.001) of identifying omissions (758/2008, 37.75%) and offensive comments (729/2008, 36.3%) in their EHR compared with the somatic health care group (1867/7086, 26.35% and 826/7086, 11.66%, respectively). Mental health care respondents in hospital inpatient settings were more likely to identify errors (398/588, 67.7%; P<.001) and omissions (251/588, 42.7%; P<.001) than those in outpatient care (errors: 422/837, 50.4% and omissions: 336/837, 40.1%; P<.001) and primary care (errors: 32/100, 32% and omissions: 29/100, 29%; P<.001). Hospital inpatients also reported feeling more offended (344/588, 58.5%; P<.001) by certain content in their EHR compared with respondents in primary (21/100, 21%) and outpatient care (287/837, 34.3%) settings. Our qualitative findings showed that both mental and somatic health care respondents identified the most serious errors in their EHR in terms of medical history, communication, diagnosis, and medication. CONCLUSIONS: Most mental and somatic health care respondents showed a positive attitude toward PAEHRs. However, mental health care respondents, especially those with severe and chronic concerns, expressed a more critical attitude toward certain content in their EHR compared with somatic health care respondents. A PAEHR can provide valuable information and foster trust, but it requires careful attention to the use of clinical terminology to ensure accurate, nonjudgmental documentation, especially for persons belonging to health care groups with unique sensitivities. 
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