Nationwide citizen access to their health data: analysing and comparing experiences in Denmark, Estonia and Australia.
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ABSTRACT:
SUBMITTER: Nohr C
PROVIDER: S-EPMC5547535 | biostudies-other | 2017 Aug
REPOSITORIES: biostudies-other
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Project description:BackgroundIn publicly funded health systems, digital health technologies are strategies that aim to improve the quality and safety of health care service delivery and enhance patient experiences and outcomes. In Canada, governments and health organizations have invested in digital health technologies such as personal health records (PHRs) and other electronic service functionalities and innovation across provincial and territorial health systems.ObjectivePatients' access to their own information via secure, Web-based PHRs and integrated virtual care services are promising mechanisms for supporting patient engagement in health care. We draw on current evidence to develop an economic model that estimates the demonstrated and potential value of these digital health initiatives.MethodsWe first synthesized results from a variety of Canadian and international studies on the outcomes for patients and service providers associated with PHRs across a continuum of services, ranging from viewing information (eg, laboratory results) on the Web to electronic prescription renewal to email or video conferencing with care teams and providers. We then developed a quantitative model of estimated value, grounded in these demonstrated benefits and citizen use (2016-2017). In addition to estimating the costs saved from patient and system perspectives, we used a novel application of a compensating differential approach to assess the value (independent of costs) to society of improved health and well-being resulting from PHR use.ResultsPatients' access to a range of digital PHR functions generated value for Canadians and health systems by increasing health system productivity, and improving access to and quality of health care provided. As opportunities increased to interact and engage with health care providers via PHR functions, the marginal value generated by utilization of PHR functionalities also increased. Web-based prescription renewal generated the largest share of the total current value from the patient perspective. From the health systems perspective, Canadians' ability to view their information on the Web was the largest value share. If PHRs were to be implemented with more integrated virtual care services, the value generated from populations with chronic illnesses such as severe and persistent mental illness and diabetes could amount to between Can $800 million and Can $1 billion per year across Canadian health systems.ConclusionsPHRs with higher interactivity could yield substantial potential value from wider implementation in Canada and increased adoption rates in certain target groups-namely, high-frequency health system users and their caregivers. Further research is needed to tie PHR use to health outcomes across PHR functions, care settings, and patient populations.
| S-EPMC6592482 | biostudies-literature
Project description:Nationwide disparities in managing neurological patients have rarely been reported. We compared neurological health care between the population who reside in a Health and Social Care Trust with a tertiary neuroscience center and those living in the four non-tertiary center Trusts in Northern Ireland. Using the tertiary center Trust population as reference, neurodisparity indices (NDIs) defined as the number of treated patients resident in each Trust per 100,000 residents compared to the same ratio in the tertiary center Trust for a fixed time period. NDIs were calculated for four neurological pathways-intravenous thrombolysis (iv-tPA) and mechanical thrombectomy (MT) for acute ischemic stroke (AIS), disease modifying treatment (DMT) in multiple sclerosis (MS) and admissions to a tertiary neurology ward. Neurological management was recorded in 3,026 patients. Patients resident in the tertiary center Trust were more likely to receive AIS treatments (iv-tPA and MT) and access to the neurology ward (p < 0.001) than patients residing in other Trusts. DMT use for patients with MS was higher in two non-tertiary center Trusts than in the tertiary center Trust. There was a geographical gradient for MT for AIS patients and ward admissions. Averaged NDIs for non-tertiary center Trusts were: 0.48 (95%CI 0.32-0.71) for patient admissions to the tertiary neurology ward, 0.50 (95%CI 0.38-0.66) for MT in AIS patients, 0.78 (95%CI 0.67-0.92) for iv-tPA in AIS patients, and 1.11 (95%CI 0.99-1.26) for DMT use in MS patients. There are important neurodisparities in Northern Ireland, particularly for MT and tertiary ward admissions. Neurologists and health service planners should be aware that geography and time-dependent management of neurological patients worsen neurodisparities.
| S-EPMC7907594 | biostudies-literature
Project description:IntroductionThis study aimed to explore the experiences of healthcare access in a diverse sample of trans and gender diverse individuals with complex needs using qualitative methods. We recruited 12 individuals using trans community-based networks facilitated by the Gender Centre. Each individual participated in an in-depth, semi structured interview conducted by a peer interviewer. Interviews were analysed thematically.FindingsParticipants had a range of complex health needs to manage, including ongoing access to gender-affirming hormones, mental health care and sexual health care. Some also had chronic diseases. Accordingly, scheduling appointments and affording the co-payments required were major preoccupations. Most participants were not in full time work, and economic hardship proved to be a major compounding factor in issues of healthcare access, impacting on the choice of clinician or practice. Other barriers to accessing health included issues within health services, such as disrespectful attitudes, misgendering, 'deadnaming' (calling the person by their previous name), displaying an excessive interest is aspects of the participants' life that were irrelevant to the consultation, and displaying ignorance of trans services such that the participants felt an obligation to educate them. In addition, participants noted how stereotyped ideas of trans people could result in inaccurate assumptions about their healthcare needs. Positive attributes of services were identified as respectful communication styles, clean, welcoming spaces, and signs that indicated professionalism, care and openness, such as relevant information pamphlets and visibility of LGBTIQ service orientation. Participants valued peer-based advice very highly, and some would act on and trust medical advice from peers above advice from medical professionals.ConclusionThese findings demonstrate a need for comprehensive wrap-around service provision for trans people with complex needs which includes a substantial peer-based component, and addresses physical and mental health and social services conveniently and affordably.
| S-EPMC7842963 | biostudies-literature
Project description:Background Migrants settling in a new country experience multiple complexities in navigating health care systems and adapting to a new way of life in the host country. In South Asia, migrating to another country for better life opportunities has been an ongoing trend and migration to Australia has significantly increased in recent years. Lower utilisation of health services and higher risks of chronic diseases among South Asian migrants poses a continuing challenge for the Australian health care system and little is known about why this demographic group does not access health services at the same rate. This study aimed to explore factors influencing access to health care by South Asian migrants in Australia. Methods Using a mixed-method design, we conducted 62 online survey and 14 in-depth interviews with participants from four South Asian countries: Nepal, India, Bhutan, and Sri Lanka. Participants were recruited using a purposive snowball sampling approach following a standard ethical approval process. Survey data were analysed descriptively in SPSS and interview data were recorded, transcribed, and analysed thematically. Results South Asian migrants experienced various complexities while accessing health services in Australia. The findings of this study highlighted a number of negative factors influencing their experiences of accessing health care: long waiting times for public health care, the expense of private health care, and communication problems due to socio-cultural differences. South Asian migrants also expressed their concern for a greater investment of resources into public health care to enable them to access quality and affordable care in these settings. Conclusions Given limited evidence available to help understand factors leading to the lower utilisation of health care and higher risks of chronic diseases among South Asian migrants, this study plays an important role in highlighting social, cultural, financial, and institutional factors that are critical to designing appropriate health-care strategies. This study recommends incorporating a collaborative and culturally competent model of care to increase access to health care and thereby help reduce existing disparities in health outcomes among South Asian migrant populations. Supplementary Information The online version contains supplementary material available at 10.1186/s12889-021-12132-6.
| S-EPMC8596381 | biostudies-literature
Project description:BACKGROUND:Opioid use has more than doubled over recent decades, and Denmark occupies fifth place in the global ranking. These increases have been partly attributed to the ageing population. OBJECTIVE:Our objective was to assess the impact of age over time on utilisation of the most commonly used opioids in Denmark. METHODS:We retrieved nationwide sales data on opioid sales in Denmark from 1999 to 2017. We investigated utilisation trends in age groups for the four opioids with the highest use. We used three volume-based metrics (defined daily doses/1000/day, oral morphine equivalents/1000/day, and packages dispensed/year) and one person-based metric (users/1000/year). RESULTS:The four opioids selected according to users/1000/year were tramadol (46.1), codeine and combination products (12.4 for codeine, 3.7 for codeine and acetylsalicylic acid, and 4.2 for codeine and paracetamol), morphine (17.0), and oxycodone (12.1). Overall utilisation according to volume and person metrics increased for all except codeine and combination products. Tramadol doses or strength increased, albeit less with increasing age. Oxycodone doses or strength decreased for all age groups but were nearly unchanged for the age group ??80 years. CONCLUSION:Tramadol is the most utilised opioid in Denmark and was prescribed at increasing doses or strengths over the study period, particularly in the younger (<?80 years) age groups. Overall, oxycodone was prescribed at decreasing doses or strengths over time but remained unchanged for the age group ??80 years. There is a need to address the pharmacological treatment of pain in terms of age, with tramadol and oxycodone being possible targets for regulatory efforts.
| S-EPMC6879688 | biostudies-literature
Project description:Denmark has played a substantial role in the history of Northern Europe. Through a nationwide scientific outreach initiative, we collected genetic and anthropometrical data from ?800 high school students and used them to elucidate the genetic makeup of the Danish population, as well as to assess polygenic predictions of phenotypic traits in adolescents. We observed remarkable homogeneity across different geographic regions, although we could still detect weak signals of genetic structure reflecting the history of the country. Denmark presented genomic affinity with primarily neighboring countries with overall resemblance of decreasing weight from Britain, Sweden, Norway, Germany, and France. A Polish admixture signal was detected in Zealand and Funen, and our date estimates coincided with historical evidence of Wend settlements in the south of Denmark. We also observed considerably diverse demographic histories among Scandinavian countries, with Denmark having the smallest current effective population size compared to Norway and Sweden. Finally, we found that polygenic prediction of self-reported adolescent height in the population was remarkably accurate (R2 = 0.639 ± 0.015). The high homogeneity of the Danish population could render population structure a lesser concern for the upcoming large-scale gene-mapping studies in the country.
| S-EPMC5068857 | biostudies-literature
Project description:Climate change and invasive species threaten biodiversity, yet rigorous monitoring of their impact can be costly. Citizen science is increasingly used as a tool for monitoring exotic species, because citizens are geographically and temporally dispersed, whereas scientists tend to cluster in museums and at universities. Here we report on the establishment of the first exotic ant taxon (Tetramorium immigrans) in Denmark, which was discovered by children participating in The Ant Hunt. The Ant Hunt is a citizen science project for children that we ran in 2017 and 2018, with a pilot study in 2015. T. immigrans was discovered in the Botanical Garden of the Natural History Museum of Denmark in 2015 and confirmed as established in 2018. This finding extends the northern range boundary of T. immigrans by almost 460 km. Using climatic niche modelling, we compared the climatic niche of T. immigrans in Europe with that of T. caespitum based on confirmed observations from 2006 to 2019. T. immigrans and T. caespitum had a 13% niche overlap, with T. immigrans showing stronger occurrence in warmer and drier areas compared to T. caespitum. Mapping the environmental niches onto geographic space identified several, currently uninhabited, areas as climatically suitable for the establishment of T. immigrans. Tetramorium immigrans was sampled almost three times as often in areas with artificial surfaces compared to T. caespitum, suggesting that T. immigrans may not be native to all of Europe and is being accidentally introduced by humans. Overall, citizen scientists collected data on ants closer to cities and harbours than scientists did and had a stronger bias towards areas of human disturbance. This increased sampling effort in areas of likely introduction of exotic species naturally increases the likelihood of discovering species sooner, making citizen science an excellent tool for exotic species monitoring, as long as trained scientists are involved in the identification process.
| S-EPMC7150537 | biostudies-literature
Project description:BACKGROUND:Young people have unique social, emotional and developmental needs that require a welcoming and responsive health system, and policies that support their access to health care. Those who are socially or culturally marginalised may face additional challenges in navigating health care, contributing to health inequity. The aim of this study was to understand health system navigation, including the role of technology, for young people belonging to one or more marginalised groups, in order to inform youth health policy in New South Wales, Australia. METHODS:This qualitative longitudinal study involved 2-4 interviews each over 6 to 12 months with marginalised young people aged 12-24 years living in NSW. The analysis used Nvivo software and grounded theory. RESULTS:We interviewed 41 young people at baseline who were living in rural or remote areas, sexuality and/or gender diverse, refugee, homeless, and/or Aboriginal. A retention rate of over 85% was achieved. Nineteen belonged to more than one marginalised group allowing an exploration of intersectionality. General practitioners (family physicians) were the most commonly accessed service throughout the study period. Participants were ambivalent about their healthcare journeys. Qualitative analysis identified five themes: 1. Technology brings opportunities to understand, connect and engage with services 2. Healthcare journeys are shaped by decisions weighing up convenience, engagement, effectiveness and affordability. 3. Marginalised young people perceive and experience multiple forms of discrimination leading to forgone care. 4. Multiple marginalisation makes health system navigation more challenging 5. The impact of health system complexity and fragmentation may be mitigated by system knowledge and navigation support CONCLUSIONS: The compounding effects of multiple discrimination and access barriers were experienced more strongly for young people belonging to mutiple marginalised groups. We identify several areas for improving clinical practice and policy. Integrating technology and social media into processes that facilitate access and navigation, providing respectful and welcoming services that recognise diversity, improving health literacy and involving professionals in advocacy and navigation support may help to address these issues.
| S-EPMC6399978 | biostudies-literature
Project description:The koala (Phascolarctos cinereus) occurs in the eucalypt forests of eastern and southern Australia and is currently threatened by habitat fragmentation, climate change, sexually transmitted diseases, and low genetic variability throughout most of its range. Using data collected during the Great Koala Count (a 1-day citizen science project in the state of South Australia), we developed generalized linear mixed-effects models to predict habitat suitability across South Australia accounting for potential errors associated with the dataset. We derived spatial environmental predictors for vegetation (based on dominant species of Eucalyptus or other vegetation), topographic water features, rain, elevation, and temperature range. We also included predictors accounting for human disturbance based on transport infrastructure (sealed and unsealed roads). We generated random pseudo-absences to account for the high prevalence bias typical of citizen-collected data. We accounted for biased sampling effort along sealed and unsealed roads by including an offset for distance to transport infrastructures. The model with the highest statistical support (wAIC c ? 1) included all variables except rain, which was highly correlated with elevation. The same model also explained the highest deviance (61.6%), resulted in high R (2)(m) (76.4) and R (2)(c) (81.0), and had a good performance according to Cohen's ? (0.46). Cross-validation error was low (? 0.1). Temperature range, elevation, and rain were the best predictors of koala occurrence. Our models predict high habitat suitability in Kangaroo Island, along the Mount Lofty Ranges, and at the tips of the Eyre, Yorke and Fleurieu Peninsulas. In the highest-density region (5576 km(2)) of the Adelaide-Mount Lofty Ranges, a density-suitability relationship predicts a population of 113,704 (95% confidence interval: 27,685-199,723; average density = 5.0-35.8 km(-2)). We demonstrate the power of citizen science data for predicting species' distributions provided that the statistical approaches applied account for some uncertainties and potential biases. A future improvement to citizen science surveys to provide better data on search effort is that smartphone apps could be activated at the start of the search. The results of our models provide preliminary ranges of habitat suitability and population size for a species for which previous data have been difficult or impossible to gather otherwise.
| S-EPMC4201425 | biostudies-literature
Project description:"Testing Denmark" is a national, large-scale, epidemiological surveillance study of SARS-CoV-2 in the Danish population. Between September and October 2020, approximately 1.3 million people (age >15 years) were randomly invited to fill in an electronic questionnaire covering COVID-19 exposures and symptoms. The prevalence of SARS-CoV-2 antibodies was determined by point-of care rapid test (POCT) distributed to participants' home addresses. In total, 318,552 participants (24.5% invitees) completed the study and 2,519 (0.79%) were seropositive. Of the participants with a prior positive PCR test (n = 1,828), 29.1% were seropositive in the POCT. Although seropositivity increased with age, participants 61 years and over reported fewer symptoms and were tested less frequently. Seropositivity was associated with physical contact with SARS-CoV-2 infected individuals (risk ratio [RR] 7.43, 95% CI: 6.57-8.41), particular in household members (RR 17.70, 95% CI: 15.60-20.10). A greater risk of seropositivity was seen in home care workers (RR 2.09, 95% CI: 1.58-2.78) compared to office workers. A high degree of adherence with national preventive recommendations was reported (e.g., >80% use of face masks), but no difference were found between seropositive and seronegative participants. The seroprevalence result was somewhat hampered by a lower-than-expected performance of the POCT. This is likely due to a low sensitivity of the POCT or problems reading the test results, and the main findings therefore relate to risk associations. More emphasis should be placed on age, occupation, and exposure in local communities. IMPORTANCE To date, including 318,522 participants, this is the largest population-based study with broad national participation where tests and questionnaires have been sent to participants' homes. We found that more emphasis from national and local authorities toward the risk of infection should be placed on age of tested individuals, type of occupation, as well as exposure in local communities and households. To meet the challenge that broad nationwide information can be difficult to gather. This study design sets the stage for a novel way of conducting studies. Additionally, this study design can be used as a supplementary model in future general test strategy for ongoing monitoring of COVID-19 immunity in the population, both from past infection and from vaccination against SARS-CoV-2, however, with attention to the complexity of performing and reading the POCT at home.
| S-EPMC8672904 | biostudies-literature