| 1. |
- Bärkås, Annika, et al.
(författare)
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Patients’ access to their psychiatric notes : Current policies and practices in Sweden
- 2021
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:17
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Tidskriftsartikel (refereegranskat)abstract
- Patients’ access to electronic health records (EHRs) is debated worldwide, and access to psychiatry records is even more criticized. There is a nationwide service in Sweden which offers all citizens the opportunity to read their EHR, including clinical notes. This study aims to explore Swedish national and local policy regulations regarding patients’ access to their psychiatric notes and describe to what extent patients currently are offered access to them. The rationale behind the study is that current policies and current practices may differ between the 21 self-governing regions, although there is a national regulation. We gathered web-based information from policy documents and regulations from each region’s website. We also conducted key stakeholder interviews with respondents from the regions and cross-regional private care providers, using a qualitative approach. The results show that 17 of 21 regions share psychiatric notes with patients, where forensic psychiatric care was the most excluded psychiatric care setting. All private care providers reported that they mainly follow the regions’ guidelines. Our findings show that regional differences concerning sharing psychiatric notes persist, despite Swedish regulations and a national policy that stipulates equal care for everyone. The differences, however, appear to have decreased over time, and we report evidence that the regions are moving toward increased transparency for psychiatry patients.
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| 2. |
- Bärkås, Annika, et al.
(författare)
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Patients' Access to Their Psychiatric Records : A Comparison of Four Countries
- 2022
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Ingår i: Challenges of Trustable AI and Added-Value on Health. - Amsterdam; Berlin; Washington, DC : IOS Press. - 9781643682846 - 9781643682853 ; 294, s. 510-514
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Konferensbidrag (refereegranskat)abstract
- Several Nordic and Baltic countries are forerunners in the digitalization of patient ehealth services and have since long implemented psychiatric records as parts of the ehealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.
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| 3. |
- Igelström, Helena, 1976-, et al.
(författare)
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User Experiences of an Internet-Based Stepped-Care Intervention for Individuals With Cancer and Concurrent Symptoms of Anxiety or Depression (the U-CARE AdultCan Trial) : Qualitative Study
- 2020
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Ingår i: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 22:5
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Tidskriftsartikel (refereegranskat)abstract
- Background: The internet-based stepped-care intervention iCAN-DO, used in the multicenter randomized controlled trial AdultCan, was developed for adult patients undergoing treatment for cancer and concurrently experiencing anxiety or depressive symptoms. iCAN-DO aimed to decrease symptoms of anxiety or depression. Step 1 comprises access to a library with psychoeducational material and a peer-support section, as well as the possibility to pose questions to a nurse. Step 2 of the intervention offers treatment consisting of internet-based cognitive behavioral therapy (iCBT) to participants still experiencing anxiety or depression at 1, 4, or 7 months after inclusion.Objective: The study aimed to explore user experiences of delivery, design, and structure of iCAN-DO from the perspective of people with cancer.Methods: We studied user experiences by interviewing 15 informants individually: 10 women with breast cancer (67%), 4 men with prostate cancer (27%), and 1 man with colorectal cancer (7%) with a mean age 58.9 years (SD 8.9). The interviews focused on informants' perceptions of ease of use and of system design and structure. Informants had been included in iCAN-DO for at least 7 months. They were purposefully selected based on activity in Step 1, participation in iCBT (ie, Step 2), gender, and diagnosis.Results: Of the 15 informants, 6 had been offered iCBT (40%). All informants used the internet on a daily basis, but 2 (13%) described themselves as very inexperienced computer users. The analysis revealed three subthemes, concerning how user experiences were affected by disease-specific factors and side effects (User experience in the context of cancer), technical problems (Technical struggles require patience and troubleshooting), and the structure and design of iCAN-DO (Appealing and usable, but rather simple).Conclusions: The results indicate that user experiences were affected by informants' life situations, the technical aspects and the design of iCAN-DO, and informants' preferences. The results have generated some developments feasible to launch during the ongoing study, but if iCAN-DO is to be used beyond research interest, a greater level of tailoring of information, features, and design may be needed to improve user experiences. The use of recurrent questionnaires during the treatment period may highlight an individual's health, but also function as a motivator showing improvements over time.
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| 4. |
- Klintö, Kristina, et al.
(författare)
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Coverage, reporting degree and design of the Swedish quality registry for patients born with cleft lip and/or palate
- 2020
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Ingår i: BMC Health Services Research. - : BMJ Publishing Group Ltd. - 1472-6963. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The objective of the Swedish cleft lip and palate (CLP) registry is to promote quality control, research and improvement of treatment, by comparison of the long-term results of surgery, orthodontics and speech from all six Swedish CLP centres. The purpose of the study was to investigate the coverage and reporting degree of the Swedish CLP registry, and to describe the design of the registry and discuss questions of reliability and validity of the data included.Methods: All six Swedish CLP centres participate in the registry. All children in Sweden with cleft lip and/or cleft palate, born from 2009 onwards, are included in the registry. Baseline data such as cleft type (ICD-10 diagnosis), heredity, birth weight and additional deformities and/or syndromes, as well as pre-surgical treatment, are recorded at first visit. Data on surgical treatment are recorded continuously. Treatment outcome regarding dentofacial development and speech are recorded at follow-ups at 5, 10, 16 and 19 years of age. Data on dentofacial development are also recorded 1 year after orthognathic surgery. In addition, data on babbling and speech are recorded at 18 months of age. Coverage degree and reporting degree of surgery was assessed by comparison with registrations in the Swedish Central patient registry. Reporting degree of orthodontic and speech registrations at 5 years of age was assessed by comparison with registrations at baseline.Results: The average coverage degree for children born 2009 to 2018 was 95.1%. For cleft-related surgeries, the average reporting degree was 92.4%. Average reporting degree of orthodontic registrations and speech registrations at age 5 years was 92 and 97.5% respectively.Conclusion: In order to achieve valid and reliable data in a healthcare quality registry, the degree of coverage and reporting needs to be high, the variables included should be limited and checked for reliability, and the professionals must calibrate themselves regularly. The Swedish CLP registry fulfils these requirements.
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| 5. |
- Moll, Jonas, 1982-, et al.
(författare)
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Patients’ Experiences of Accessing Their Electronic HealthRecords : National Patient Survey in Sweden
- 2018
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Ingår i: Journal of Medical Internet Research. - : J M I R Publications, Inc.. - 1438-8871. ; 20:11
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Tidskriftsartikel (refereegranskat)abstract
- Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.Objective: The objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.
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| 6. |
- Muli, Irene, et al.
(författare)
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Healthcare Professionals' Experiences of the Work Environment After Patients' Access to Their Electronic Health Records - A Qualitative Study in Primary Care.
- 2022
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Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 294, s. 530-534
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Muli, Irene, et al.
(författare)
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To connect or not connect : long-term adoption of video consultations, and reasons for discontinuing use
- 2023
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Ingår i: Journal of Telemedicine and Telecare. - : SAGE Publications. - 1357-633X .- 1758-1109.
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionThis study investigates factors related to long-term and short-term adoption of video consultations (VCs) and reasons for discontinuing use among primary care patients.MethodsA 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.ResultsThere 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.DiscussionYounger 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.
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| 8. |
- Woodford, Joanne, et al.
(författare)
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Help-seeking behaviour and attitudes towards internet-administered psychological support among adolescent and young adults previously treated for cancer during childhood : Protocol for a survey and embedded qualitative interview study in Sweden
- 2021
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: A subgroup of adolescent and young adult childhood cancer survivors (AYACCS) are at increased risk of psychological distress. Despite this, AYACCS experience difficulties accessing psychological support.E-mentalhealth (e-MH) may offer a solution to reducethis treatment gap. However, research examining e-MHfor AYACCS has experienced difficulties with recruitment, retention and adherence. Such difficulties may relate to:(1) help-seeking behaviour and/or (2) e-MH acceptability.The overall study aims are to: (1) examine potential associations between health service use factors, informed by Andersen’s behavioural model of health services use, and help-seeking behaviour; (2) examine attitudes towards e-MHinterventions; and (3) explore perceived need for mental health support; past experience of receiving mental health support; preferences for support; and barriers and facilitators to help-seeking.Methods and analysis: An online and paper-based cross-sectional self-report survey (98 items) and embedded qualitative interview study across Sweden, with a target sample size of n=365. Participants are aged 16–39 years, diagnosed with cancer when 0–18 years and have completed successful cancer treatment. The survey examines sociodemographic and clinical characteristics, actual help-seeking behaviour, attitudes towards e-MH, stigma of mental illness, mental health literacy, social support and current symptoms of depression, anxiety, and stress. Survey respondents with past and/or current experience of mental health difficulties are invited into the qualitative interview study to explore: (1) perceived need for mental health support; (2) past experience of receiving mental health support; (3) preferences for support; and (4) barriers and facilitators to help-seeking. Potential associations between health service use factors and help-seeking behaviour are examined using univariable and multivariable logistic regressions. Qualitative interviews are analysed using content analysis.
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