| 1. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
-
The Future of Online Video Consultations in Primary Care : A Qualitative Study
- 2023
-
Ingår i: Caring is Sharing - Exploiting the Value in Data for Health and Innovation - Proceedings of MIE 2023. - : IOS Press. - 1879-8365 .- 0926-9630. - 9781643683881 - 9781643683898 ; 302, s. 942-946
-
Konferensbidrag (refereegranskat)abstract
- The COVID-19 pandemic has significantly increased the use of remote services such as video consultations (VCs). In Sweden, private healthcare providers offering VCs have grown substantially since 2016 and have been controversial. Few studies have focused on physicians' experiences of providing care in this context. Our overall aim was to study physicians' experiences of VCs, here focusing on their suggestions for future improvements. Twenty-two semi-structured interviews were performed with physicians working for an online healthcare provider in Sweden, and analyzed through inductive content analysis. Two themes emerged related to desired future improvements of VCs; blended care and technical innovation.
|
|
| 2. |
- Scandurra, Isabella, 1973-, et al.
(författare)
-
When do people read their health record? analysis of usage data of a national eHealth service giving patients access to their electronic health record
- 2017
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: eHealth services for citizens provide support for patients and families, as well as for healthcare professionals. In Sweden different eHealth services have been developed since the late 1990s and they are now used by millions of users. One of the national eHealth services that provides opportunities for increased participation in care is the Patient Accessible Electronic Health Record (PAEHR). To date (February 2017) over one million citizens (of 10 million inhabitants) have accessed their own electronic health record (EHR). In this study, we describe current usage by analysing log-data from the service. Who are the users, and how and when do they use the service?Method: Data collection of routinely captured usage data was administered by Inera AB, owner of all Swedish national eHealth services. Data was analyzed through IBM SPSS in accordance with the declaration of Helsinki. Queries for this quantitative study were created based on previously published results regarding concerns often expressed by healthcare professionals (HCP) as well as routinely captured log-data. Descriptive usage statistics were analysed towards such HCP concerns, e.g. increased workload due to worried patients reading but not understanding the PAEHR content.Results: Current status of the Swedish PAEHR is presented, e.g. number of users, demographic data (age, gender) in relation to log-in statistics. Regarding log-ins, first-time users and unique hits show that attention by national media has an impact a news cast resulted in 31,000 logged in compared to a week day average of 20,000. To date more than 1 million citizens have chosen to log in and the numbers are increasing. A newly connected region (Örebro) has an average of 500 new users a day. This can be compared to the first region (Uppsala) which during the first year (2012- 2013) had approx. 100 new users a day, although the strategy then was not to advertise the service. In total 10,000 to 13,000 new users log in every day nationally. More women than men log in and their mean age are 23-32 years. The older the users get the less they use the PAEHR, however some users are older than 93 years. During weekends the activity decreases, as opposed to HCP expectations. More often, users log in on week days, e.g. on Monday morning.Discussion: Usage statistics were related to concerns of HCP, which seem to have little resemblance to reality. One concern was that the service would not provide benefit for patients, here contradicted by the increasing number of both first-time and recurrent users. However, such indicators need to be further analysed. Paper records and PAEHR usage are difficult to compare, due to lack of statistics regarding printout reading. Usage comparisons between PAEHR solutions of different counties would however be interesting.Conclusion: Recurrent concerns of mainly HCP seem to be contradicted by actual usage by patients. This may lead to a decreased controversy of how PAEHR is experienced by patients and HCP. Knowledge about how users actually use PAEHR may also improve the service as such.
|
|
| 3. |
- Ögmundsdóttir Michelsen, Halldóra, et al.
(författare)
-
The effect of audit and feedback and implementation support on guideline adherence and patient outcomes in cardiac rehabilitation : a study protocol for an open-label cluster-randomized effectiveness-implementation hybrid trial
- 2024
-
Ingår i: Implementation Science. - : BioMed Central (BMC). - 1748-5908. ; 19:1
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundProviding secondary prevention through structured and comprehensive cardiac rehabilitation programmes to patients after a myocardial infarction (MI) reduces mortality and morbidity and improves health-related quality of life. Cardiac rehabilitation has the highest recommendation in current guidelines. While treatment target attainment rates at Swedish cardiac rehabilitation centres is among the highest in Europe, there are considerable differences in service delivery and variations in patient-level outcomes between centres. In this trial, we aim to study whether centre-level guideline adherence and patient-level outcomes across Swedish cardiac rehabilitation centres can be improved through a) regular audit and feedback of cardiac rehabilitation structure and processes through a national quality registry and b) supporting cardiac rehabilitation centres in implementing guidelines on secondary prevention. Furthermore, we aim to evaluate the implementation process and costs.MethodsThe study is an open-label cluster-randomized effectiveness-implementation hybrid trial including all 78 cardiac rehabilitation centres (attending to approximately 10 000 MI patients/year) that report to the SWEDEHEART registry. The centres will be randomized 1:1:1 to three clusters: 1) reporting cardiac rehabilitation structure and process variables to SWEDEHEART every six months (audit intervention) and being offered implementation support to implement guidelines on secondary prevention (implementation support intervention); 2) audit intervention only; or 3) no intervention offered. Baseline cardiac rehabilitation structure and process variables will be collected. The primary outcome is an adherence score measuring centre-level adherence to secondary prevention guidelines. Secondary outcomes include patient-level secondary prevention risk factor goal attainment at one-year after MI and major adverse coronary outcomes for up to five-years post-MI. Implementation outcomes include barriers and facilitators to guideline adherence evaluated using semi-structured focus-group interviews and relevant questionnaires, as well as costs and cost-effectiveness assessed by a comparative health economic evaluation.DiscussionOptimizing cardiac rehabilitation centres’ delivery of services to meet standards set in guidelines may lead to improvement in cardiovascular risk factors, including lifestyle factors, and ultimately a decrease in morbidity and mortality after MI.
|
|
| 4. |
|
|
| 5. |
- Blease, Charlotte, et al.
(författare)
-
COVID-19 and Open Notes : A New Method to Enhance Patient Safety and Trust
- 2021
-
Ingår i: JMIR Mental Health. - : JMIR Publications. - 2368-7959. ; 8:6
-
Tidskriftsartikel (refereegranskat)abstract
- From April 5, 2021, as part of the 21st Century Cures Act, all providers in the United States must offer patients access to the medical information housed in their electronic records. Via secure health portals, patients can log in to access lab and test results, lists of prescribed medications, referral appointments, and the narrative reports written by clinicians (so-called open notes). As US providers implement this practice innovation, we describe six promising ways in which patients' access to their notes might help address problems that either emerged with or were exacerbated by the COVID-19 pandemic.
|
|
| 6. |
- Blease, Charlotte, et al.
(författare)
-
Does Patient Access to Clinical Notes Change Documentation?
- 2020
-
Ingår i: Frontiers In Public Health. - : Frontiers Media SA. - 2296-2565. ; 8
-
Tidskriftsartikel (refereegranskat)abstract
- Open, honest, and trustworthy communication is crucial to ensure the effective responses of citizens. Paralleling transparency in the arena of public health are new practice policies that are set to transform the transmission of information at the level of doctors and patients. While patients have legally been entitled to obtain copies of their records for many years, in March 2020 federal legislation in the United States (U.S.) mandated that health providers offer all patients rapid and secure online access to their clinical notes via patient portals (“open notes”) (1). Similar developments are underway in the United Kingdom (U.K.) where in April 2020 it was announced that patients in NHS England will be granted online access, albeit prospectively, to their full general practitioners' notes (2). Worldwide, open notes have already been enacted in more than ten countries including Sweden, Estonia, and Norway (3).A variety of surveys have been conducted into patients' and doctors' experiences of open notes but much less is understood about the objective changes in documentation that may arise as a result of patient access (4–7). We review current research into open notes including clinicians' reports on how they have modified their notes as a result of implementing the practice. Highlighting the potentially beneficial and harmful effects that different types of documentation changes might have on the therapeutic relationship and on patient outcomes, we argue that more research is needed to investigate objective changes in notes as a result of patient access.
|
|
| 7. |
- 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.
|
|
| 8. |
- Blease, Charlotte, et al.
(författare)
-
Generative Language Models and Open Notes : Exploring the Promise and Limitations
- 2024
-
Ingår i: JMIR Medical Education. - : JMIR Publications. - 2369-3762. ; 10
-
Tidskriftsartikel (refereegranskat)abstract
- Patients’ online record access (ORA) is growing worldwide. In some countries, including the United States and Sweden, access is advanced with patients obtaining rapid access to their full records on the web including laboratory and test results, lists of prescribed medications, vaccinations, and even the very narrative reports written by clinicians (the latter, commonly referred to as “open notes”). In the United States, patient’s ORA is also available in a downloadable form for use with other apps. While survey studies have shown that some patients report many benefits from ORA, there remain challenges with implementation around writing clinical documentation that patients may now read. With ORA, the functionality of the record is evolving; it is no longer only an aide memoire for doctors but also a communication tool for patients. Studies suggest that clinicians are changing how they write documentation, inviting worries about accuracy and completeness. Other concerns include work burdens; while few objective studies have examined the impact of ORA on workload, some research suggests that clinicians are spending more time writing notes and answering queries related to patients’ records. Aimed at addressing some of these concerns, clinician and patient education strategies have been proposed. In this viewpoint paper, we explore these approaches and suggest another longer-term strategy: the use of generative artificial intelligence (AI) to support clinicians in documenting narrative summaries that patients will find easier to understand. Applied to narrative clinical documentation, we suggest that such approaches may significantly help preserve the accuracy of notes, strengthen writing clarity and signals of empathy and patient-centered care, and serve as a buffer against documentation work burdens. However, we also consider the current risks associated with existing generative AI. We emphasize that for this innovation to play a key role in ORA, the cocreation of clinical notes will be imperative. We also caution that clinicians will need to be supported in how to work alongside generative AI to optimize its considerable potential.
|
|
| 9. |
|
|
| 10. |
|
|
| 11. |
- Blease, Charlotte, et al.
(författare)
-
Patient Access to Mental Health Notes : Motivating Evidence-Informed Ethical Guidelines
- 2021
-
Ingår i: Journal of Nervous and Mental Disease. - : Wolters Kluwer. - 0022-3018 .- 1539-736X. ; 209:4, s. 265-269
-
Tidskriftsartikel (refereegranskat)abstract
- ABSTRACT: In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as "open notes" is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates-with few exemptions-that providers offer patients access to their online notes (Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Available at: https://www.govinfo.gov/content/pkg/FR-2019-03-04/pdf/2019-02224.pdf#page=99). Against these policy changes, only limited attention has been paid to the ethical question about whether patients with mental health conditions should access their notes, as mentioned in the articles by Strudwick, Yeung, and Gratzer (Front Psychiatry 10:917, 2019) and Blease, O'Neill, Walker, Hägglund, and Torous (Lancet Psychiatry 7:924-925, 2020). In this article, our goal is to motivate further inquiry into opening mental health notes to patients, particularly among persons with serious mental illness and those accessing psychological treatments. Using biomedical ethical principles to frame our discussion, we identify key empirical questions that must be pursued to inform ethical practice guidelines.
|
|
| 12. |
- 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.
|
|
| 13. |
- Blease, Charlotte, et al.
(författare)
-
Patients, clinicians and open notes : information blocking as a case of epistemic injustice
- 2022
-
Ingår i: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 48:10, s. 785-793
-
Tidskriftsartikel (refereegranskat)abstract
- In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (’open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.
|
|
| 14. |
- 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.
|
|
| 15. |
- Blease, Charlotte R, et al.
(författare)
-
Sharing clinical notes, and placebo and nocebo effects : Can documentation affect patient health?
- 2022
-
Ingår i: Journal of Health Psychology. - : Sage Publications. - 1359-1053 .- 1461-7277. ; 27:1, s. 135-146
-
Tidskriftsartikel (refereegranskat)abstract
- This paper connects findings from the field of placebo studies with research into patients' interactions with their clinician's visit notes, housed in their electronic health records. We propose specific hypotheses about how features of clinicians' written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. We conclude with actionable proposals for testing our understanding of the health effects of access to visit notes.
|
|
| 16. |
|
|
| 17. |
- 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.
|
|
| 18. |
- Bärkås, Annika, et al.
(författare)
-
Analysis of Voluntary User Feedback of the Swedish National PAEHR Service
- 2019
-
Ingår i: MEDINFO 2019. - : IOS Press. - 9781643680033 - 9781643680026 ; 264, s. 1126-1130
-
Konferensbidrag (refereegranskat)abstract
- "Journalen" is a patient accessible electronic health record (PAEHR) and the national eHealth service for Sweden's citizens to gain access to their EHR. The Swedish national eHealth organization Inera, responsible for Journalen, created an inbox to receive voluntary user feedback about Journalen in order to improve the service from the user perspective. Based on voluntary user feedback via email. This study explored patients' experiences of using the national eHealth service and identified pros and cons. A mixed method content analysis was performed. In total, 1084 emails from 2016-2017 have been analyzed. 9 categories were identified, the most frequent ones related to questions about why some information was not accessible (due to regional differencies), feedback (including only positive or negative comments as well as constructive improvement suggestions), and emails about errors that user found in their record. These data can be successfully used to continuously improve an already implemented eHealth service.
|
|
| 19. |
- 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.
|
|
| 20. |
- Bärkås, Annika
(författare)
-
Patients’ Access to Their Mental Health Records : Understanding Policy, Access, and Patient Experiences
- 2024
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- ORA is the concept of patients' access to clinical information, which has become more widespread worldwide. When patients are provided online record access (ORA) to their health records, concerns have been raised by healthcare professionals, especially when it comes to patients with mental health diagnoses. In the general population, positive aspects appear to outweigh the negative, yet limited research has so far explored the impact of ORA in mental healthcare. The overall aim of this thesis was to explore how patients experience ORA in mental healthcare through four studies: 1) a literature review aimed to explore the current literature on the experiences of ORA among mental healthcare patients, care partners, and healthcare professionals, 2) a document analysis combined with key stakeholder email interviews that aimed to explore to what extent ORA in mental healthcare has been implemented in Sweden including national and local policy regulations, 3) an online patient survey study aimed to understand mental healthcare patients' experiences with ORA in Sweden, Estonia, Finland, and Norway, and 4) an online patient survey study aimed to understand if and how patients with mental health conditions experiences of ORA differs from patients in other healthcare settings. More patients reported positive experiences with ORA in mental healthcare than negative experiences. Common benefits of ORA included, among others, a greater sense of control over their care, improved understanding of their mental health diagnosis, and better adherence to appointments. Despite patients' predominant positive experiences, only 17 out of 21 regions in Sweden offered ORA in mental healthcare in 2021. Additionally, many patients experienced errors and omissions and felt offended by the content of their health records. Mental healthcare patients experienced this at a higher rate than patients in other healthcare settings.In conclusion, mental healthcare patients have higher rates of negative experiences of ORA compared to patients in other healthcare settings. However, patients' experiences of ORA are still predominantly positive among both patient groups. Yet, in 2021, only 17 regions offered patients ORA in mental healthcare. Denying mental healthcare patients ORA to protect them from negative experiences could instead increase stigma in this patient group.
|
|
| 21. |
- Bärkås, Annika, et al.
(författare)
-
Patients’ access to their psychiatric notes : Current policies and practices in Sweden
- 2021
-
Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:17
-
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.
|
|
| 22. |
- Bärkås, Annika, et al.
(författare)
-
Patients' Access to Their Psychiatric Records : A Comparison of Four Countries
- 2022
-
Ingår i: Challenges of Trustable AI and Added-Value on Health. - Amsterdam; Berlin; Washington, DC : IOS Press. - 9781643682846 - 9781643682853 ; 294, s. 510-514
-
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.
|
|
| 23. |
- 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.
|
|
| 24. |
- 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.
|
|
| 25. |
|
|
| 26. |
|
|
| 27. |
- Cijvat, Charlotte D., et al.
(författare)
-
Factors Influencing Development and Implementation of Patients' Access to Electronic Health Records : A Comparative Study of Sweden and the Netherlands
- 2021
-
Ingår i: Frontiers In Public Health. - : Frontiers Media S.A.. - 2296-2565. ; 9
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Patient-accessible electronic health records (PAEHRs) and associated national policies have increasingly been set up over the past two decades. Still little is known about the most effective strategy for developing and implementing PAEHRs. There are many stakeholders to take into account, and previous research focuses on the viewpoints of patients and healthcare professionals. Many known barriers and challenges could be solved by involving end-users in the development and implementation process. This study therefore compares barriers and facilitators for PAEHR development and implementation, both general and specific for patient involvement, that were present in Sweden and the Netherlands.Methods: There were a total of 14 semi-structured interviews with 16 key informants from both countries, on which content analysis was performed. The Consolidated Framework for Implementation Research was used to guide both the construction of the interview guides and the content analysis.Outcomes: The main barriers present in both countries are resistance from healthcare professionals and technical barriers regarding electronic health record systems and vendors. Facilitators varied across the two contexts, where the national infrastructure and program management were highlighted as facilitators in Sweden and stakeholder engagement (including patients and healthcare professionals) was described as a facilitator in both contexts. Strong leadership was also described as a critical success factor, especially when faced with healthcare professional resistance.Conclusion: Most of the major barriers and facilitators from both countries are covered in existing literature. This study, however, identified factors that can be seen as more practical and that would not have arisen from interviews with patients or physicians. Recommendations for policymakers include keeping the mentioned barriers in mind from the start of development and paving the way for facilitators, mainly strict policies, learning from peer implementers, and patient involvement, when possible. Implementers should focus on strong decision-making and project management and on preparing the healthcare organization for the PAEHR.
|
|
| 28. |
- Davoody, Nadia, et al.
(författare)
-
Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform : a case study
- 2019
-
Ingår i: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 19:1
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:Patients and citizens need access to their health information to get a retrospective as well as a prospective view on their care and rehabilitation processes. However, patients' health information is stored in several health information systems and interoperability problems often hamper accessibility. In Sweden a national health information exchange (HIE) platform has been developed that enables information exchange between different health information systems. The aim of this study is to explore the opportunities and limitations of accessing and interacting with important health information through the Swedish national HIE platform.METHODS:A single case study approach was used for this study as an in-depth understanding of the subject was needed. A fictive patient case with a pseudo-name was created based on an interview with a stroke coordinator in Stockholm County. Information access through the national health information exchange platform and available service contracts and application programming interfaces were studied using different scenarios.RESULTS:Based on the scenarios created in this study, patients would be able to access some health related information from their electronic health records using the national health information exchange platform. However, there is necessary information which is not retrievable as it is either stored in electronic health records and eHealth services which are not connected to the national health information exchange platform or there is no service contract developed for these types of information. In addition, patients are not able to share information with healthcare professionals.CONCLUSION:The national Swedish HIE platform provides the building blocks needed to allow patients online access to their health information in a fragmented and distributed health system. However, more complex interaction scenarios allowing patients to communicate with their health care providers or to update their health related information are not yet supported. Therefore it is of great importance to involve patients throughout the design and evaluation of eHealth services on both national and local levels to ensure that their needs for interoperability and information exchange are met.
|
|
| 29. |
- Davoody, Nadia, et al.
(författare)
-
Evaluation of an Electronic Care and Rehabilitation Planning Tool With Stroke Survivors With Aphasia : Usability Study
- 2023
-
Ingår i: JMIR Human Factors. - 2292-9495. ; 10
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Patients with chronic illnesses with physical and cognitive disabilities, particularly stroke survivors with aphasia, are often not involved in design and evaluation processes. As a consequence, existing eHealth services often do not meet the needs of this group of patients, which has resulted in a digital divide. Objective: The aim of this study was to examine the effectiveness and user satisfaction of an electronic care and rehabilitation planning tool from the perspective of stroke survivors with aphasia. This would help us gain knowledge on how such a tool would need to be adapted for these patients for further development. Methods: Usability tests were conducted with 9 postdischarge stroke survivors with aphasia. Effectiveness was measured using task-based tests, and user satisfaction was studied through qualitative interviews at the end of each test. All tests were audio recorded, and each test lasted approximately 1 hour. The data were analyzed using qualitative content analysis. As the tool can be used by stroke survivors either independently or with some support from their next of kin or care professionals, the research group decided to divide the participants into 2 groups. Group 1 did not receive any support during the tests, and group 2 received some minor support from the moderator. Results: The results showed that the care and rehabilitation planning tool was not effective for stroke survivors with aphasia, as many participants in group 1 did not accomplish the tasks successfully. Despite several usability problems and challenges in using the tool because of patients’ disabilities, the participants were positive toward using the tool and found it useful for their care and rehabilitation journey. Conclusions: There is a need to involve patients with chronic illnesses more in the design and evaluation processes of health information systems and eHealth services. eHealth services and health information systems designed for this group of patients should be more adaptable and flexible to provide them with appropriate functionalities and features, meet their needs, and be useful and easy to use. In addition, the design and evaluation processes should be adapted, considering the challenges of this patient group.
|
|
| 30. |
|
|
| 31. |
|
|
| 32. |
- 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.
|
|
| 33. |
- Hagström, Josefin, et al.
(författare)
-
Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online
- 2024
-
Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1422-1423
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 34. |
- 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.
|
|
| 35. |
- Hagström, Josefin, et al.
(författare)
-
Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement : a national survey in Sweden
- 2024
-
Ingår i: BMJ Paediatrics Open. - : BMJ Publishing Group Ltd. - 2399-9772. ; 8:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background Having online access to electronic health records (EHRs) may help patients become engaged in their care at an early age. However, little is known about adolescents using patient portals. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. The present study explored reasons for reading the EHRs, the perceived usefulness of information and functions in a patient portal and the association between frequency of use and encouragement to read the EHR. Methods Data were collected in a survey using convenience sampling, available through the Swedish online health portal during 3 weeks in January and February 2022. This study included a subset of items and only respondents aged 15-19. Demographic factors and frequencies on Likert-style questions were reported with descriptive statistics, while Fisher's exact test was used to explore differences in use frequency based on having been encouraged to read by a healthcare professional (HCP). Results Of 13 008 users who completed the survey, 218 (1.7%) were unique users aged 15-19 (females: 77.1%). One-fifth (47/218, 21.6%) had been encouraged by HCPs to read their records, and having been encouraged by HCPs was related to higher use frequency (p=0.018). All types of information were rated high on usefulness, while some functions were rated low, such as blocking specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity. Conclusions Adolescents who read their records online perceive it to be useful. Encouragement by HCPs can lead to increased use of patient portals among adolescents. Findings should be considered in the future design of patient portals for adolescents.
|
|
| 36. |
- Hagström, Josefin, et al.
(författare)
-
Minor and Parental Access to Electronic Health Records : Differences Across Four Countries
- 2022
-
Ingår i: Challenges of Trustable AI and Added-Value on Health. - : IOS Press. - 9781643682846 - 9781643682853 ; 294, s. 495-499
-
Konferensbidrag (refereegranskat)abstract
- An increasing number of countries are implementing patient access to electronic health records (EHR). However, EHR access for parents, children and adolescents presents ethical challenges of data integrity, and regulations vary across providers, regions, and countries. In the present study, we compare EHR access policy for parents, children and adolescents in four countries. Documentation from three areas: upper age limit of minors for which parents have access; age at which minors obtain access; and possibilities of access restriction and extension was collected from Sweden, Norway, Finland, and Estonia. Results showed that while all systems provided parents with automatic proxy access, age limits for its expiry differed. Furthermore, a lower minimum age than 18 for adolescent access was present in two of four countries. Differences between countries and potential implications for adolescents are discussed. We conclude that experiences of various approaches should be explored to promote the development of EHR regulations for parents, children and adolescents that increases safety, quality, and equality of care.
|
|
| 37. |
- Hagström, Josefin, et al.
(författare)
-
Minors' and guardian access to and use of a national patient portal : A retrospective comparative case study of Sweden and Finland.
- 2024
-
Ingår i: International Journal of Medical Informatics. - 1386-5056 .- 1872-8243. ; 187
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Approaches to implementing online record access (ORA) via patient portals for minors and guardians vary internationally, as more countries continue to develop patient-accessible electronic health records (PAEHR) systems. Evidence of ORA usage and country-specific practices to allow or block minors' and guardians' access to minors' records during adolescence (i.e. access control practices) may provide a broader understanding of possible approaches and their implications for minors' confidentiality and guardian support.AIM: To describe and compare minors' and guardian proxy users' PAEHR usage in Sweden and Finland. Furthermore, to investigate the use of country-specific access control practices.METHODS: A retrospective, observational case study was conducted. Data were collected from PAEHR administration services in Sweden and Finland and proportional use was calculated based on population statistics. Descriptive statistics were used to analyze the results.RESULTS: In both Sweden and Finland, the proportion of adolescents accessing their PAEHR increased from younger to older age-groups reaching the proportion of 59.9 % in Sweden and 84.8 % in Finland in the age-group of 17-year-olds. The PAEHR access gap during early adolescence in Sweden may explain the lower proportion of users among those who enter adulthood. Around half of guardians in Finland accessed their minor children's records in 2022 (46.1 %), while Swedish guardian use was the highest in 2022 for newborn children (41.8 %), and decreased thereafter. Few, mainly guardians, applied for extended access in Sweden. In Finland, where a case-by-case approach to access control relies on healthcare professionals' (HCPs) consideration of a minor's maturity, 95.8 % of minors chose to disclose prescription information to their guardians.CONCLUSION: While age-based access control practices can hamper ORA for minors and guardians, case-by-case approach requires HCP resources and careful guidance to ensure equality between patients. Guardians primarily access minors' records during early childhood and adolescents show willingness to share their PAEHR with parents.
|
|
| 38. |
- Hagström, Josefin, et al.
(författare)
-
Security and Privacy of Online Record Access : A Survey of Adolescents' Views and Experiences in Sweden
- 2024
-
Ingår i: Journal of Adolescent Health. - : Elsevier. - 1054-139X .- 1879-1972.
-
Tidskriftsartikel (refereegranskat)abstract
- Purpose: Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information. Methods: This study included a subset of items from a national online patient survey conducted in Sweden (January-February 2022), focusing on respondents aged 15–19 years. Gender and health status differences were calculated using the Kruskal-Wallis test. Results: Of 218 adolescent respondents (77.1% female), a minority had security and privacy concerns. A notable proportion (41.3%) wished to control who could see their records, and those who reported better perceived health were more likely to want to manage access to their electronic health record (H = 13.569, p = .009). Most had not experienced unauthorized access to their records (75.2%) and had never shared health information on other online applications (85.8%). More than half (56.0%) perceived some information as sensitive, where mental health was the most common (76.0%). Most felt that reading their notes improved their trust for their healthcare professional (65.6%) and supported better communication with healthcare professionals (66.5%). Discussion: In this national survey, adolescents generally reported few concerns about patient portals. Findings emphasize the need for security and privacy protection and to empower adolescents with greater control over access to their health information housed in electronic health record systems.
|
|
| 39. |
- Hagström, Josefin, et al.
(författare)
-
Use of and Experiences With Online Access to Electronic Health Records for Parents, Children, and Adolescents : Protocol for a Scoping Review
- 2022
-
Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 11:6
-
Forskningsöversikt (refereegranskat)abstract
- Background: As patient online access to electronic health records becomes the standard, implementation of access for adolescents and parents varies across providers, regions, and countries. There is currently no international compilation of evidence to guide policy decisions in matters such as age limit for access and the extent of parent proxy access.Objective: This paper presents the protocol for a scoping review of different stakeholders’ (including but not limited to end users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents.Methods: This scoping review will be conducted according to the Arksey and O’Malley framework. Several databases will be used to conduct a literature search (PubMed, CINAHL, and PsycInfo), in addition to literature found outside of these databases. All authors will participate in screening identified papers, following the research question: How do different stakeholders experience parents’, children’s, and adolescents’ online access to the electronic health records of children and adolescents? 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 data to be analyzed are from publicly available secondary sources, so this study does not require an ethics review.Results: The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. This scoping review protocol was first initiated by Uppsala University in June 2021 as part of the NordForsk-funded research project NORDeHEALTH. The results are expected to be presented in a scoping review in June 2022. The results will be disseminated through stakeholder meetings, scientific conference presentations, oral presentations to the public, and publication in a peer-reviewed journal.Conclusions: This is, to our knowledge, the first study to map the literature on the use and experiences of parents’ and adolescents’ online access to the electronic health records of children and adolescents. The findings will describe what benefits and risks have been experienced by different stakeholders so far in different countries. A mapping of studies could inform the design and implementation of future regulations around access to patient-accessible electronic health records.
|
|
| 40. |
- Hagström, Josefin, et al.
(författare)
-
Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents : Scoping Review
- 2022
-
Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 24:11
-
Forskningsöversikt (refereegranskat)abstract
- Background: Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. Objective: The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders’ (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. Methods: A scoping review was conducted according to the Arksey and O’Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO). Results: The approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. Conclusions: There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents’ experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. International Registered Report Identifier (IRRID): RR2-10.2196/36158
|
|
| 41. |
- Harrysson, Lars, et al.
(författare)
-
Cancer, a relational disease exploring the needs of relatives to cancer patients
- 2019
-
Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2631 .- 1748-2623. ; 14:1
-
Tidskriftsartikel (refereegranskat)abstract
- Syfte: I denna kvalitativa studie studerade vi erfarenheter bland familjemedlemmar till cancerpatienter. Vårt syfte var att undersöka och differentiera deras behov från de behov som cancer patienten uppvisar.Metod: Fem fokusintervjuer och sex individuella narrativa intervjuer med 17 familje medlemmar till cancerpatiener i Sverige genomfördes och jämförda med 19 intervjuer med cancerpatienter. Vår analys var inspirerad av klassisk grundad teori.Resaultat: Familjemedlemmar till cancerpatienter uppvisade egen sjukdom kopplad till höga stressnivåer och svårigheter att erkänna egen stress till följd av pågående jämförelser med cancerpatienten. Familjemedlemmar var fastlåsta i en momentan terrorlik situation där de blev den sjukes skyddsnät. En upplevd oförmåga till att förbättra den sjukes hälsa och välmående bidrog till känslor av skukld. Önskan om att allt skulle vara över var inbäddat i skam då slutet innebar möjlig död.Slutsatser: Genom att erkänna cancer som en sjukdom som påverkar både kropp och relationer kan familjemedlemmar ges kontroll över sina egna kamper skilda från patientens upplevelser. Vi definierar skillnaderi behov mellan cancer patienter och anhöriga. De anhöriga till cancerpatienter kan ges stöd i att utveckla balanserade strategier för mindre stress, ökad trygghet och stunder av förnöjsamhet.
|
|
| 42. |
|
|
| 43. |
- 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.
|
|
| 44. |
|
|
| 45. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
-
Does user centred design work in homecare for elderly? : a retrospective on the OLD@HOME case
- 2011
-
Ingår i: International Journal of Integrated Care. - Utrecht : Igitur. - 1568-4156 .- 1568-4156. ; 11
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: Mobile information and communication technology (ICT) has been suggested to improve collaboration in integrated homecare, yet, few successful implementations are available. User centred design (UCD) can improve the usefulness of ICT, however, it is often claimed to be expensive and difficult to use in healthcare. In the action research project OLD@HOME (Sweden 2002–2005) a user centred approach was adapted to the specific context of integrated homecare for elderly.Aim: To revisit OLD@HOME and explore what methodological adjustments were needed to adapt UCD to integrated homecare of elderly, and what the long-term effects of using UCD were.Results: Our collaborative design method included all stakeholders and enabled development of both new work situations and new tools. Five years after implementation, the system is still used by home help service personnel, for both homecare- and office-based work, as it provides ubiquitous access to information and communication. Technical support is rarely needed; experienced users handle occurring problems, training and introduction of new users.Conclusions: We consider the development method a key factor for the OLD@HOME system’s success as it enabled the design of a homecare system that is not only easy to use, but adapted to the context of integrated homecare for elderly
|
|
| 46. |
|
|
| 47. |
|
|
| 48. |
|
|
| 49. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
-
Escape to the future : a qualitative study of physicians' views on the work environment, education, and support in a digital context
- 2023
-
Ingår i: BMC Medical Informatics and Decision Making. - : BioMed Central (BMC). - 1472-6947. ; 23:1
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundThe use of remote services such as video consultations (VCs) has increased significantly in the wake of the COVID-19 pandemic. In Sweden, private healthcare providers offering VCs have grown substantially since 2016 and have been controversial. Few studies have focused on physicians’ experiences providing care in this context. Our aim was to study physicians’ experiences of VCs, focusing on the work environment, quality of care, and educational needs.MethodsTwenty-two semi-structured interviews were performed with physicians working with VCs in Sweden, and analyzed through inductive content analysis.ResultsWe identified five categories; flexibility, social work environment, impact on care and society, continuous learning and career development, and organizational support. Flexibility and accessibility were considered positive features of working digitally by giving physicians control over their time and workplace and increasing patients’ timely access to healthcare. Regarding collegial contact and social activities in a digital context, the majority of the participants did not experience any significant difference compared to the physical context. Access to technical support services, educational support, and collegial support in decision-making, guidance, and consultations were described as well-functioning. Satisfied patients positively impacted the work environment, and participants felt that VCs have a positive socio-economic effect. Continuity of care was considered supported, but patients did not always prioritize this. Privacy risks were considered a challenge, as were poor development of clinical skills due to the low variation of patient cases. Working for an online healthcare provider was contributing to career advancements for junior clinicians.ConclusionsPhysicians appreciate the flexibility of the digital context and seem satisfied with a work environment where they have a high level of control, but few consider this a full-time career option. The pandemic year 2020 has led to a significant increase in the implementation of VCs in traditional care systems. How this affects the work environment and continuous education needs and career development remains to be seen.
|
|
| 50. |
|
|
