1.
Sandén, Ulrika, et al.
(författare)
A perspective-taking university course for cancer survivors, loved ones and healthcare professionals
2024
Ingår i: Social Sciences & Humanities Open. - : Elsevier. - 2590-2911. ; 2024:9
Tidskriftsartikel (refereegranskat) abstract
This study reports the results of a university course aimed at exploring and improving cooperation in healthcare with both cancer survivors, loved ones and healthcare professionals as students.Central to the course was the understanding of and moving between each other's perspectives. Operating within a framework inspired by problem-based learning (PBL), small groups consisting of at least one cancer survivor, one loved one and one healthcare professional, collaboratively created scenarios based on their personal experiences. The students developed, elaborated, and identified problems and potential solutions. The pedagogical framing illustrated an empowering process of defining and elaborating a problem of their combined concerns, using their different knowledge. Although cooperation presented challenges, most students were able to explore and appreciate each other's perspectives when provided with a safe environment. Our experiences highlight the importance of both contextual safety and personal development as key factors in addressing power imbalances in healthcare.
2.
Hägglund, Maria, Lektor, 1975-, et al.
(författare)
Supporting citizen-centered care for seniors - experiences from two Swedish research projects
2012
Ingår i: 2012 25th IEEE International Symposium on Computer-Based Medical Systems (CBMS). - Rome, Italy : IEEE conference proceedings. - 9781467320511 ; , s. 1-6
Konferensbidrag (refereegranskat) abstract
The development of information and communication technology (ICT) for citizen-centered care requires insight into concrete problems in care processes as well as an understanding of the goals and values that should guide these. In this retrospective study we return to results from two research projects focusing on the needs of senior citizens and stroke patients. We describe the intersections between health care services, social care services and private services, and analyze these with focus on the needs of independence, continuity and participation. The current state of ICT in relation to the identified needs is also addressed. In conclusion, an increasing number of solutions are available to support senior citizens in different parts of their lives, yet they remain isolated and have limited impact. In order to harness value for senior citizens, it is imperative to continue with multidisciplinary research focusing on socio-technical aspects; addressing technological, organizational, legal and business-related aspects.
3.
Jäderlund Hagstedt, Lovisa, et al.
(författare)
Impact of the Covid-19 pandemic on use of Video consultations in a Swedish Primary care setting
2022
Ingår i: Proceedings of the 18th Scandinavian Conference on Health Informatics. - : Linköping University Electronic Press. - 9789179293444 ; , s. 212-213
Konferensbidrag (refereegranskat) abstract
The objective is to describe how the uptake of online video consultations was affected by the Covid-19 pandemic, using data from a Swedish primary care setting. There seem to be a relationship between the use of video consultations and spread of Covid-19, especially in 2020 when the use varied more with the contagion waves. In 2021 the use was more consistent over time. In summary, the Covid-19 pandemic had a direct impact on the adoption of video consultations in our primary care setting, yet after the initial high use, it appears to have stabilized on a lower level.
4.
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.
5.
Riggare, Sara, et al.
(författare)
“You have to know why you're doing this” : a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease
2019
Ingår i: BMC Medical Informatics and Decision Making. - Stockholm : Springer Science and Business Media LLC. - 1472-6947. ; 19:1
Tidskriftsartikel (refereegranskat) abstract
Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD.Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking.Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare.Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.
6.
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.
7.
Hägglund, Maria, Lektor, 1975-, et al.
(författare)
Mobile Access and Adoption of the Swedish National Patient Portal
2020
Ingår i: Integrated Citizen Centered Digital Health and Social Care. - : IOS Press. - 9781643681443 - 9781643681450 ; 275, s. 82-86
Konferensbidrag (refereegranskat) abstract
Patient portals are used as a means to facilitate communication, performing administrative tasks, or accessing one's health record. In a retrospective analysis of real-world data from the Swedish National Patient Portal 1177.se, we describe the rate of adoption over time, as well as how patterns of device usage have changed over time. In Jan 2013, 53% of all visits were made from a computer, and 38% from a mobile phone. By June 2020, 77% of all visits were made from a mobile phone and only 20% from a computer. These results underline the importance of designing responsive patient portals that allow patients to use any device without losing functionality or usability.
8.
Hägglund, Maria, Lektor, 1975-, et al.
(författare)
Patients’ access to health records
2019
Ingår i: The BMJ. - : BMJ. - 1756-1833 .- 0959-8138. ; 367
Tidskriftsartikel (övrigt vetenskapligt/konstnärligt) abstract
Patients and clinicians are equally frustrated by the slow pace of changeThe international movement pushing to increase transparency by giving patients easy access to their health information parallels a broader shift in healthcare towards increased patient empowerment and participation. In the United States, the philanthropic OpenNotes initiative works to increase transparency by encouraging healthcare organisations to provide patients with access to notes in their electronic health record. It began in 2010 as a pilot that included 105 volunteer primary care providers and their 19 000 patients and has since spread throughout the US, with more than 200 organisations offering roughly 41 million patients access to their clinical notes. In Sweden, the first region-wide implementation of patient access to electronic health records was in 2012, more than 10 years after the first pilot study. All 21 Swedish regions have now offered this e-service through a national patient portal that integrates with all electronic health record systems currently used in Sweden. More than 3 million people (>30% of the population) had accessed their records online by August 2019, and more than 2 million logins occur each month.Similar patient accessible electronic record systems are implemented in other countries, though different strategies and approaches have influenced uptake and impact. Progress has been slow because of legal constraints, technical challenges, and concerns or resistance among healthcare professionals. Low rates of adoption among patients have also been a problem in some areas. Nonetheless, research evidence reports positive outcomes among patients accessing their records, and the concerns expressed by healthcare professionals have not been realised. Patients who read their notes report understanding their care plans better, feeling more in control of their care, doing a better job taking their medications, improved communication with and trust in their clinicians, and improved patient safety.
9.
Hägglund, Maria, Lektor, 1975-, et al.
(författare)
Personalized Communication : People with Hearing Loss' Experiences of Using a National Patient Portal
2020
Ingår i: Digital Personalized Health and Medicine. - : IOS Press. - 9781643680828 - 9781643680835 ; 270, s. 1031-1035
Konferensbidrag (refereegranskat) abstract
Patient portals are used as a means to facilitate communication, performing administrative tasks, or accessing one's health record. A qualitative study was therefore performed to understand how people with hearing loss experience using the Swedish national patient portal 1177.se and the patient accessible electronic health record Journalen. Data was collected through focus groups and individual interviews. Ten persons with varying degree of hearing loss, age and years of using a hearing aid participated. The data was analyzed through thematic content analysis and three themes emerged; access to written information, patient-created information and personalized communication. Although the study is limited in size, we believe that important lessons can be learned regarding the needs for personalized communication, including access to written information.
10.
Peute, Linda W., et al.
(författare)
Challenges and Best Practices in Ethical Review of Human and Organizational Factors Studies in Health Technology : a Synthesis of Testimonies
2020
Ingår i: IMIA Yearbook of Medical Informatics. - : Georg Thieme Verlag KG. - 0943-4747 .- 2364-0502. ; 29:1, s. 58-70
Tidskriftsartikel (refereegranskat) abstract
OBJECTIVE: Human and Organizational Factors (HOF) studies in health technology involve human beings and thus require Institutional Review Board (IRB) approval. Yet HOF studies have specific constraints and methods that may not fit standard regulations and IRB practices. Gaining IRB approval may pose difficulties for HOF researchers. This paper aims to provide a first overview of HOF study challenges to get IRB review by exploring differences and best practices across different countries.METHODS: HOF researchers were contacted by email to provide a testimony about their experience with IRB review and approval. Testimonies were thematically analyzed and synthesized to identify and discuss shared themes.RESULTS: Researchers from seven European countries, Argentina, Canada, Australia, and the United States answered the call. Four themes emerged that indicate shared challenges in legislation, IRB inefficiencies and inconsistencies, general regulation and costs, and lack of HOF study knowledge by IRB members. We propose a model for IRB review of HOF studies based on best practices.CONCLUSION: International criteria are needed that define low and high-risk HOF studies, to allow identification of studies that can undergo an expedited (or exempted) process from those that need full IRB review. Enhancing IRB processes in such a way would be beneficial to the conduct of HOF studies. Greater knowledge and promotion of HOF methods and evidence-based HOF study designs may support the evolving discipline. Based on these insights, training and guidance to IRB members may be developed to support them in ensuring that appropriate ethical issues for HOF studies are considered.
