11.
Moll, Jonas, 1982-, et al.
(författare)
Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients’ Access to Electronic Health Records in 4 European Countries : Framework Evaluation Study
2024
Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26
Tidskriftsartikel (refereegranskat) abstract
Background: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland, Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-country analysis has not been developed. Objective: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use. Methods: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. Results: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared with patients; human-computer interface; people; workflow and communication; the health care organization’s internal policies, procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the health care system context dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries. Conclusions: This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs.
12.
Diarbakerli, E., et al.
(författare)
Learning from the past to plan for the future: A scoping review of musculoskeletal clinical research in Sweden 2010-2020
2022
Ingår i: Upsala Journal of Medical Sciences. - : Uppsala Medical Society. - 0300-9734 .- 2000-1967. ; 127:1
Tidskriftsartikel (refereegranskat) abstract
Background: The aims of this study are to 1) determine the scope of musculoskeletal (MSK)-related clinical research in Sweden; 2) collate the amount of first-tier funding received; 3) discuss strategies and infrastructure supporting future MSK clinical trials in Sweden. Methods: A systematic scoping review protocol was applied in PubMed, Scopus, and SweCRIS databases. The articles were examined, and data were extracted in multiple stages by three blinded authors. Results: The search strategy resulted in 3,025 publications from 479 Swedish-affiliated authors. Primary health care was the basis for 14% of the publications, 84% from secondary health care, and 2% from occupational health care with a similar proportional distribution of first-tier research grant financing. Approximately one in six publications were randomized controlled trials (RCTs), while the majority were of observational cohort design. The majority of publications in primary and occupational health care were related to pain disorders (51 and 67%, respectively), especially diagnosis, prognosis, and healthcare organizational-related interventions (34%) and rehabilitation (15%) with similar proportional distribution of first-tier research grant financing. In secondary health care, rheumatic inflammatory disorder-related publications were most prevalent (30%), most frequently concerning diagnosis, prognosis, and healthcare organizational-related interventions (20%), attracting approximately half of all first-tier funding. Publications related to degenerative joint disorders (25%), fractures (16%), and joint, tendon, and muscle injuries (13%) frequently concerned surgical and other orthopedic-related interventions (16, 6, and 8%, respectively). Pain disorder-related publications (10%) as well as bone health and osteoporosis-related publications (4%) most frequently concerned diagnosis, prognosis, and healthcare organizational-related interventions (5 and 3%, respectively). Conclusions: Swedish-affiliated MSK disorder research 2010-2020 was predominantly observational cohort rather than RCT based. There was skewed first-tier funding allocation considering prevalence/incidence and burden of disease. Use of infrastructure supporting register-based RCTs, placebo-controlled RCTs, and hybrid effectiveness-implementation studies on prevention and clinical intervention is important strategies for the future in all healthcare sectors.
13.
14.
Wannheden, C., et al.
(författare)
Digital Health Technologies Enabling Partnerships in Chronic Care Management : Scoping Review
2022
Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 24:8
Tidskriftsartikel (refereegranskat) abstract
Background: An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited. Objective: This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies. Methods: A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used. Results: This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions. Conclusions: Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management.
15.
Girma Kebede, Betlehem, et al.
(författare)
Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia
2020
Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3
Tidskriftsartikel (refereegranskat) abstract
Background: Cancer is a growing concern in Ethiopia. Though communication is essential for the treatment process, few studies have looked at communication in Ethiopian cancer care. Due to the large number of patients and scarcity of resources, it is vital to understand how to manage consultations in order to effectively help as many patients as possible in this challenging work environment. Thus, research is needed to analyze and understand the communicative challenges experienced by physicians, patients, and family caregivers, in order to successfully handle patient care in practice. Objective We explore communication in Ethiopian cancer care and present the main challenges faced by physicians, patients, and family caregivers. Methods This explorative qualitative study was conducted at the Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa, Ethiopia. A triangulation of data collection methods was used: 91 audio-recorded, semi-structured interviews and 21 video-recordings of authentic interactions during hospital rounds. The aim was to obtain as complete a picture as possible of communication from the perspectives of physicians, patients, and family caregivers. The interviews were analyzed using thematic content analysis and the identified themes were supported by excerpts from the transcribed recordings. Results Eight themes emerged from the data. Workload and time pressure, in combination with restricted space for privacy, limited the possibilities for physicians to deliver detailed information and provide emotional support. Furthermore, patient literacy levels, in combination with no or little cancer awareness, financial problems, reliance on traditional and religious treatments, the stigma of cancer, and a fatalistic attitude, resulted in delays in patients seeking care and participating in positive health behaviors, and, subsequently, often resulted in an unwillingness to openly discuss problems with physicians and adhere to treatment. The study also illustrates the paramount role of family in physician-patient communication in Ethiopia. Though family caregivers provide a valuable interpreting support when patients have limited language skills, they can also prevent patients from sharing information with physicians. Another important finding is that family caregivers were often responsible for making decisions about treatment and avoided telling patients about a poor prognosis, believing that conveying bad news may upset them. All of these themes have important implications for the role of ethically acceptable communication in patient-centered care. Conclusions This study has identified a number of serious challenges for successful and ethically acceptable health communication in Ethiopian cancer care. The study contributes to our understanding of the complexity around the role of family, combined with patients’ dependency on family members for communication, support, and access to care, which creates particular ethical dilemmas for the medical staff. The questions raised by this study concern how to organize consultations to achieve patient-centered health communication, while maintaining a constructive alliance with the family and not jeopardizing the patient’s continued access to care. The integration of communication training for medical students in Ethiopia, with a focus on ethical guidelines for family-centered patient consultation suitable for these circumstances, would be an essential step.
16.
17.
18.
Ekman, Björn, et al.
(författare)
Utilization of digital primary care in Sweden : Descriptive analysis of claims data on demographics, socioeconomics, and diagnoses
2019
Ingår i: International Journal of Medical Informatics. - : Elsevier. - 1386-5056 .- 1872-8243. ; 127, s. 134-140
Tidskriftsartikel (refereegranskat) abstract
Objective: As digital technologies for health continue to develop, the ability to provide primary care services to patients with new symptoms will grow. In Sweden, two providers of digital primary care have expanded rapidly over the past years giving rise to a heated debate with clear policy implications. The purpose of the study is to present a descriptive review of digital primary care as currently under development in Sweden.Methods: Descriptive analysis of national coverage data on the utilization of digital care by sex, age, place of residence, socioeconomic status, and most common diagnoses. The data are compared with samples of corresponding data on traditional, office-based primary care, out-of-hours care, and on non-emergency telephone consultations to obtain a comparative analysis of digital care.Results: Digital primary care in Sweden has increased rapidly over the past two years. Currently, more than 30,000 digital consultations are made per month, equivalent to around two percent of all physician-led primary care. Digital care differs in some ways to that of traditional care as users are generally younger and seek for different conditions compared with office-based primary care. Digital care is also similar to traditional care as utilization is higher in metropolitan areas compared with rural areas. Similar to general health care use, there is a negative correlation between use of digital care and socioeconomic status. User profiles by age and sex of digital care are also similar to those of out-of-hours care and non-emergency telephone medical consultations.Conclusions: By providing a detailed description of the development of digital primary care the study contributes to a growing understanding of the contributions that digital technologies can make to health care. Based on current trends digital primary care is likely to continue to increase in frequency over the coming years. As technologies develop and the public becomes more familiar to interacting with medical providers over the Internet also the scope of digital care is likely to expand. As the provision of digital primary care expands across Europe and beyond, policy makers will need to develop regulating capacities to ensure its safe, effective and equitable integration into existing health systems.
19.
Cutas, Daniela, 1978, et al.
(författare)
Legal imperialism in the regulation of stem cell research and therapy: the problem of extraterritorial jurisdiction
2010
Ingår i: Capps BJ & Campbell AV (eds.). CONTESTED CELLS: Global Perspectives on the Stem Cell Debate. - London : Imperial College Press. - 9781848164376 ; , s. 95-119
Bokkapitel (övrigt vetenskapligt/konstnärligt) abstract
Countries worldwide have very different national regulations on human embryonic stem (ES) cell research, informed by a range of ethical values. Some countries find reason to extend the applicability of their regulations on such research to its citizens when they visit other countries. Extraterritorial jurisdiction has recently been identified as a potential challenge towards global regulation of ES cell research. This chapter explores the implications and impact of extraterritorial jurisdiction and global regulation of ES cell research on researchers, clinicians and national health systems, and how this may affect patients. The authors argue that it would make ethical sense for ES cell restrictive countries to extend its regulations on ES cell research beyond its borders, because, if these countries really consider embryo destruction to be objectionable on the basis on the status of the embryo, then they ought to count it morally on par with murder (and thus have a moral imperative to protect embryos from the actions of its own citizens). However, doing so could lead to a legal situation that would result in substantial harm to central values in areas besides research, such as health care, the job market, basic freedom of movement, and strategic international finance and politics. Thus, it seems that restrictive extraterritorial jurisdiction in respect to ES cell research would be deeply problematic, given that the ethical permissibility of ES cell research is characterised by deep and wide disagreement.
20.
Nijsingh, Niels, 1977, et al.
(författare)
Ethics of Screening
2017
Ingår i: International Encyclopedia of Public Health, 2nd Edition, Volume 3. Stella R.Quah (ed.). - Oxford, U.K. : Academic Press (Elsevier). - 9780128037089 ; , s. 28-35
Bokkapitel (refereegranskat)
