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- Essén, Anna, et al.
(författare)
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Patient access to electronic health records : Differences across ten countries
- 2018
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Ingår i: Health Policy and Technology. - : Elsevier. - 2211-8837 .- 2211-8845. ; 7:1, s. 44-56
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Tidskriftsartikel (refereegranskat)abstract
- Abstract: Patient-accessible electronic health records (PAEHRs) are being implemented at international scale. Comparing policies and systems could allow countries to learn from each other to address global and nation-specific challenges. We compare national PAEHR policy (hard and soft regulation) and services in 10 countries.Methods: PAEHR policy and system documentation was gathered from Australia, Denmark, Estonia, Finland, France, the Netherlands, New Zealand, Norway, Sweden and the United States. A basic analytic model for policy analysis was used to delimit our focus to policy content, followed by an inductive thematic analysis across countries, in which we clustered initial themes into a set of categories of PAEHR service “approaches” related to three specific content areas.Results: Although all 10 countries ensured some patient rights to access medical records, policies and systems were highly variable, as were the technological processes arising from these. In particular, three policy areas showed great variability. Depending upon country of origin, a patient would encounter differences in: login procedures (security), access to own and other patients’ data during adolescence (user rights), and types of medical data made available to the patient (data sets).Conclusions: Individuals encounter very different access rights to their medical data depending on where they live. Countries may be able to develop improved policies by examining how other nations have solved common problems. Harmonizing policies is also an initial step likely to be needed before cross-national PAEHRs could be possible.
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| 4. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
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A Nordic Perspective on Patient Online Record Access and the European Health Data Space
- 2024
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26:1
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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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| 6. |
- Hägglund, Maria, et al.
(författare)
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NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record Access
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
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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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| 7. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
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The NORDeHEALTH 2022 Patient Survey : Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
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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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| 8. |
- Marko-Varga, György, et al.
(författare)
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Understanding Drug Uptake and Binding within Targeted Disease Micro-Environments in Patients: A New Tool for Translational Medicine
- 2012
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Ingår i: Clinical and Translational Medicine. - : Wiley. - 2001-1326. ; 1
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Tidskriftsartikel (refereegranskat)abstract
- For many common global diseases, such as cancer, diabetes, neurodegenerative and cardiovascular diseases there is an unmet need for diagnosing early indications of disease that could enable medical intervention and early treatment. For example, cigarette smoking causes a variety of deadly diseases including lung cancer, hypertension, chronic obstructive pulmonary disease (COPD) and cardiovascular diseases. The treatment of these diseases will require detailed knowledge of targeted pathways involved in disease pathogenesis but also the mode of drug actions at the biological location on these targets. New methods, such as matrix assisted laser desorption/ionization mass spectrometry imaging (MALDI-MSI) are ready to provide insights into the fate (destinations and distributions) of administered drugs. Translational medicine is a new area of research where expert from different disciplines involved in basic science and clinical disciplines meet and join forces. The ultimate goal is to identify bridging comprehension that forms a knowledge base that can be used by society to develop a better treatment and medicine for patients.
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| 9. |
- Maron, Eduard, et al.
(författare)
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Manifesto for an international digital mental health network
- 2019
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Ingår i: Digital Psychiatry. - 2575-517X. ; :1
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Tidskriftsartikel (refereegranskat)abstract
- Current mental health services across the world remain expert-centric and are based on traditional workflows, mostly using impractical and ineffective electronic record systems or even paper-based documentation. The international network for digital mental health (IDMHN) is comprised of top-level clinicians, regulatory and ICT experts, genetic scientists, and support organizations. The IDMHN has been formed to enable the implementation of digital innovations in clinical practice, hereby facilitating the transformation of current mental health services to be more personalized and more responsive to patients and healthcare needs. This consensus statement summarizes the consortium’s vision and strategy for further development of digital mental Health.
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| 10. |
- Moll, Jonas, 1982-, et al.
(författare)
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Contextual Factors of Patients' Access to Electronic Health Records in Four European Countries : A Socio-Technical Cross-Country Analysis
- 2024
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
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Tidskriftsartikel (refereegranskat)abstract
- Background: The NORDeHEALTH project studies patient access to electronic health records in Estonia, Finland, Norway and Sweden. Such country comparisons require an analysis of the socio-technical context of these services.Objective: To develop a method for a socio-technical analysis of patient accessible electronic health records (PAEHRs) that advances a framework first presented by Sitting and Singh. This first article in a series presents the evaluation 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 socio-technical analysis were discussed and extended in a series of discussions with international stakeholders. A spreadsheet with relevant questions related to the studied services was constructed and distributed to the four participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in ten socio-technical dimensions.Results: Three dimensions were added to the method of Sittig and Singh to separate clinical content from features and functions of PAEHRs and to demonstrate basic characteristics of the different countries regarding national and regional steering of healthcare and ICT 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, Healthcare Organization’s Internal Policies, Procedures and Culture, National Rules, Regulations and Incentives, System Measurement and Monitoring and Healthcare System Context. Several similarities were identified between the compared countries, especially regarding Hardware and Software Computing Infrastructure. When it comes to the dimension Healthcare System Context most of the differences could be identified. One important difference concerned the governing of ICT development where different levels (state, region, municipality) were responsible in different countries.Conclusions: This is the first large-scale international socio-technical analysis of services for patients to access their electronic health records; the present 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.
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