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The European Commission's draft for the European Health Data Space (EHDS) aims to empower citizens to access their personal health data and share it with physicians and other health-care providers. It further defines procedures for the secondary use of electronic health data for research and development. Although this planned legislation is undoubtedly a step in the right direction, implementation approaches could potentially result in centralised data silos that pose data privacy and security risks for individuals. To address this concern, we propose federated personal health data spaces, a novel architecture for storing, managing, and sharing personal electronic health records that puts citizens at the centre-both conceptually and technologically. The proposed architecture puts citizens in control by storing personal health data on a combination of personal devices rather than in centralised data silos. We describe how this federated architecture fits within the EHDS and can enable the same features as centralised systems while protecting the privacy of citizens. We further argue that increased privacy and control do not contradict the use of electronic health data for research and development. Instead, data sovereignty and transparency encourage active participation in studies and data sharing. This combination of privacy-by-design and transparent, privacy-preserving data sharing can enable health-care leaders to break the privacy-exploitation barrier, which currently limits the secondary use of health data in many cases.
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Registros Eletrônicos de Saúde , Médicos , Humanos , Segurança Computacional , Privacidade , Atenção à SaúdeRESUMO
BACKGROUND: Although psychoeducation is generally recommended for the treatment of adult attention-deficit hyperactivity disorder (ADHD), participation in clinical psychoeducation groups is impeded by waiting times and the constrained number of patients who can simultaneously attend a group. Digital psychoeducation attempts are promising, but the rapidly expanding number of apps lack evidence and are mostly limited to only a few implemented interactive elements. AIMS: To determine the potential of digital, self-guided psychoeducation for adult ADHD, a newly developed interactive chatbot was compared with a previously validated, conventional psychoeducation app. METHOD: Forty adults with ADHD were randomised, of whom 17 participants in each group completed self-guided psychoeducation based on either a chatbot or conventional psychoeducation app between October 2020 and July 2021. ADHD core symptoms were assessed before and after the 3-week interventions, using both the blinded observer-rated Integrated Diagnosis of ADHD in Adulthood interview and the self-rated ADHD Self-Assessment Scale (ADHS-SB). RESULTS: Observer- and patient-rated ADHD symptoms were significantly reduced from pre- to post-intervention (observer-rated: mean difference -6.18, 95% CI -8.06 to -4.29; patient-rated: mean difference -2.82, 95% CI -4.98 to -0.67). However, there were no group × intervention interaction effects that would indicate a stronger therapeutic benefit of one of the interventions. Likewise, administered psychoeducational knowledge quizzes did not show differences between the groups. No adverse events were reported. CONCLUSIONS: Self-guided psychoeducation based on a chatbot or a conventional app appears similarly effective and safe for improving ADHD core symptoms. Future research should compare additional control interventions and examine patient-related outcomes and usability preferences in detail.
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The Asian longhorned beetle Anoplophora glabripennis (ALB) is a dreaded quarantine pest that attacks a wide range of hardwood tree species. However, some of the specified host plants which have to be eradicated in infestation zones such as lime and beech trees almost never get infested or may even be resistant to the ALB. As a result, the specified host plant list needs to be revised based on the data from the infestation areas in the EU, in order to avoid further felling of whole lime avenues and major clear-cutting in parks with old growth. As large differences may exist between species of the same genus, exact species not merely genera should be specified on the host list.
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Recent evidence suggests that the assumed conflict-avoidant programming of autonomous vehicles will incentivize pedestrians to bully them. However, this frequent argument disregards the embedded nature of social interaction. Rule violations are socially sanctioned by different forms of social control, which could moderate the rational incentive to abuse risk-avoidant vehicles. Drawing on a gamified virtual reality (VR) experiment (n = 36) of urban traffic scenarios, we tested how vehicle type, different forms of social control, and monetary benefit of rule violations affect pedestrians' decision to jaywalk. In a second step, we also tested whether differences in those effects exist when controlling for the risk of crashes in conventional vehicles. We find that individuals do indeed jaywalk more frequently when faced with an automated vehicle (AV), and this effect largely depends on the associated risk and not their automated nature. We further show that social control, especially in the form of formal traffic rules and norm enforcement, can reduce jaywalking behavior for any vehicle. Our study sheds light on the interaction dynamics between humans and AVs and how this is influenced by different forms of social control. It also contributes to the small gamification literature in this human-computer interaction.
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Psychoeducation is generally recommended in the treatment of adult Attention-Deficit/Hyperactivity Disorder (ADHD), but only few studies have systematically assessed the effects of structured clinical psychoeducation. Moreover, although a considerable number of psychoeducational mobile applications exist, none have provided scientific evidence for their effectiveness or safety. Therefore, the present randomized controlled trial investigated a newly developed, free-to-use psychoeducation app for adults with ADHD as a support to a clinical psychoeducation group. 236 adults with ADHD were contacted for study participation, of whom 60 were finally randomized to a psychoeducation group supported either by our developed smartphone app (n = 30) or by traditional pen-and-paper brochures (n = 30). Psychoeducation treatments were conducted in groups of 10, with 8 weekly one-hour sessions between March 2019 and November 2020. Observer-rated ADHD symptom severity (IDA-R interview) was examined as the primary outcome parameter before and after treatment. Across both interventions, ADHD core symptoms were significantly reduced. Notably, the smartphone-assisted psychoeducation was significantly more effective in improving inattention and impulsivity and led to higher homework compliance than the brochure-assisted psychoeducation. No adverse events were reported.
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Transtorno do Deficit de Atenção com Hiperatividade , Humanos , Adulto , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , SmartphoneRESUMO
Almost all Western societies are facing the challenge that their population structure is changing very dynamically. Already in 2019, ten countries had a population share of at least 20 percent in the age group of 64 years and older. Today's society aims to improve population health and help older people live active and independent lives by developing, establishing, and promoting safe and effective interventions. Modern technological approaches offer tremendous opportunities but pose challenges when preventing functional decline. As part of the AEQUIPA Prevention Research Network, the use of technology to promote physical activity in older people over 65 years of age was investigated in different settings and from various interdisciplinary perspectives, including technology development and evaluation for older adults. We present our findings in three main areas: (a) design processes for developing technology interventions, (b) older adults as a user group, and (c) implications for the use of technology in interventions. We find that cross-cutting issues such as time and project management, supervision of participants, ethics, and interdisciplinary collaboration are of vital importance to the success of the work. The lessons learned are discussed based on the experiences gained in the overall AEQUIPA network while building, particularly on the experiences from the AEQUIPA sub-projects TECHNOLOGY and PROMOTE. Our experiences can help researchers of all disciplines, industries, and practices design, study and implement novel technology-based interventions for older adults to avoid pitfalls and create compelling and meaningful solutions.
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Exercício Físico , Pesquisadores , Humanos , Idoso , Pessoa de Meia-Idade , TecnologiaRESUMO
Parasitic chytrid fungi have emerged as a significant threat to amphibian species worldwide, necessitating the development of techniques to isolate these pathogens into culture for research purposes. However, early methods of isolating chytrids from their hosts relied on killing amphibians. We modified a pre-existing protocol for isolating chytrids from infected animals to use toe clips and biopsies from toe webbing rather than euthanizing hosts, and distributed the protocol to researchers as part of the BiodivERsA project RACE; here called the RML protocol. In tandem, we developed a lethal procedure for isolating chytrids from tadpole mouthparts. Reviewing a database of use a decade after their inception, we find that these methods have been applied across 5 continents, 23 countries and in 62 amphibian species. Isolation of chytrids by the non-lethal RML protocol occured in 18% of attempts with 207 fungal isolates and three species of chytrid being recovered. Isolation of chytrids from tadpoles occured in 43% of attempts with 334 fungal isolates of one species (Batrachochytrium dendrobatidis) being recovered. Together, these methods have resulted in a significant reduction and refinement of our use of threatened amphibian species and have improved our ability to work with this group of emerging pathogens.
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Anfíbios/microbiologia , Quitridiomicetos/isolamento & purificação , Espécies em Perigo de Extinção , Animais , Disseminação de Informação , Larva/microbiologia , SoftwareRESUMO
Globalized infectious diseases are causing species declines worldwide, but their source often remains elusive. We used whole-genome sequencing to solve the spatiotemporal origins of the most devastating panzootic to date, caused by the fungus Batrachochytrium dendrobatidis, a proximate driver of global amphibian declines. We traced the source of B. dendrobatidis to the Korean peninsula, where one lineage, BdASIA-1, exhibits the genetic hallmarks of an ancestral population that seeded the panzootic. We date the emergence of this pathogen to the early 20th century, coinciding with the global expansion of commercial trade in amphibians, and we show that intercontinental transmission is ongoing. Our findings point to East Asia as a geographic hotspot for B. dendrobatidis biodiversity and the original source of these lineages that now parasitize amphibians worldwide.
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Anfíbios/microbiologia , Extinção Biológica , África , América , Animais , Ásia , Austrália , Quitridiomicetos/classificação , Quitridiomicetos/genética , Quitridiomicetos/isolamento & purificação , Quitridiomicetos/patogenicidade , Europa (Continente) , Genes Fúngicos , Variação Genética , Hibridização Genética , Coreia (Geográfico) , Filogenia , Análise de Sequência de DNA , VirulênciaRESUMO
The paper introduces the theoretical framework and methods/instruments used by the Physical Activity and Health Equity: Primary Prevention for Healthy Ageing (AEQUIPA) prevention research network as an interdisciplinary approach to tackle key challenges in the promotion of physical activity among older people (65+). Drawing on the social-ecological model, the AEQUIPA network developed an interdisciplinary methodological design including quantitative/qualitative studies and systematic reviews, while combining expertise from diverse fields: public health, psychology, urban planning, sports sciences, health technology and geriatrics. AEQUIPA tackles key challenges when promoting physical activity (PA) in older adults: tailoring of interventions, fostering community readiness and participation, strengthening intersectoral collaboration, using new technological devices and evaluating intervention generated inequalities. AEQUIPA aims to strengthen the evidence base for age-specific preventive PA interventions and to yield new insights into the explanatory power of individual and contextual factors. Currently, the empirical work is still underway. First experiences indicate that thenetwork has achieved a strong regional linkage with communities, local stakeholders and individuals. However, involving inactive persons and individuals from minority groups remained challenging. A review of existing PA intervention studies among the elderly revealed the potential to assess equity effects. The results will add to the theoretical and methodological discussion on evidence-based age-specific PA interventions and will contribute to the discussion about European and national health targets.
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Exercício Físico , Promoção da Saúde/métodos , Promoção da Saúde/organização & administração , Saúde Pública , Idoso , Promoção da Saúde/normas , Humanos , Equipe de Assistência ao PacienteRESUMO
Social Interaction and the feeling of emotional closeness to beloved ones is mainly driven by the communication with each other. For patients suffering from a serious disease due to intense mood changes, it is difficult to keep regular contact with relatives. This affects the need for direct and verbal communication with relatives. To continue the participation in each others lives, we have developed a concept to share daily activities, current moods and presence information using a smart living room table. A first lab study with a prototype showed promising results with regard to expressiveness, joy of use, and usability.
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Atividades Cotidianas , Afeto , Comunicação , Decoração de Interiores e Mobiliário/métodos , Adolescente , Adulto , Pessoas com Deficiência , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto JovemRESUMO
Many societies across the world are confronted with demographic changes, usually related to increased life expectancy and, often, relatively low birth rates. Information and communication technologies (ICT) may contribute to adequately support senior citizens in aging societies with respect to quality of life and quality and efficiency of health care processes. For investigating and for providing answers on whether new information and communication technologies can contribute to keeping, or even improving quality of life, health and self-sufficiency in ageing societies through new ways of living and new forms of care, the Lower Saxony Research Network Design of Environments for Ageing (GAL) had been established as a five years research project, running from 2008 to 2013. Ambient-assisted living (AAL) technologies in personal and home environments were especially important. In this article we report on the GAL project, and present some of its major outcomes after five years of research. We report on major challenges and lessons learned in running and organizing such a large, inter- and multidisciplinary project and discuss GAL in the context of related research projects. With respect to research outcomes, we have, for example, learned new knowledge about multimodal and speech-based human-machine-interaction mechanisms for persons with functional restrictions, and identified new methods and developed new algorithms for identifying activities of daily life and detecting acute events, particularly falls. A total of 79 apartments of senior citizens had been equipped with specific "GAL technology", providing new insights into the use of sensor data for smart homes. Major challenges we had to face were to deal constructively with GAL's highly inter- and multidisciplinary aspects, with respect to research into GAL's application scenarios, shifting from theory and lab experimentation to field tests, and the complexity of organizing and, in our view, successfully managing such a large project. Overall it can be stated that, from our point of view, the GAL research network has been run successfully and has achieved its major research objectives. Since we now know much more on how and where to use AAL technologies for new environments of living and new forms of care, a future focus for research can now be outlined for systematically planned studies, scientifically exploring the benefits of AAL technologies for senior citizens, in particular with respect to quality of life and the quality and efficiency of health care.
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Vida Independente , Monitorização Ambulatorial/métodos , Qualidade de Vida , Acidentes por Quedas/prevenção & controle , Idoso , Envelhecimento , Avaliação Geriátrica , Alemanha , Nível de Saúde , Humanos , Fatores SocioeconômicosRESUMO
To live a self-determined life at home is uncontroversally a desire of many ageing people. Decreases in motor and mental capabilities, however, frequently make daily activities more difficult for them. Older people often forget tasks and appointments, and decreased mobility can limit their social interaction. In this study, we investigate the way in which technological support can assist in the organisation, structuring and remembering of daily activities. Aiming at assistance seamlessly integrated into a person's household, we carried out an initial user study to investigate the technology and the kind of desired assistance of such a personal household assistant system should offer. We designed a reminder system for appointments and activities that uses different sounds, light colours or vibration patterns to represent different categories of calendar events such as upcoming tasks and appointments. The evaluation results show a preference for solely acoustic presentations or an acoustic presentation in combination with visual and tactile output. In our future work, we will refine the ambient and interactive presentation and implement and evaluate this technology in residential homes.
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Envelhecimento , Vida Independente , Sistemas de Alerta/instrumentação , Idoso , Idoso de 80 Anos ou mais , Agendamento de Consultas , Atitude Frente aos Computadores , Exercício Físico , Feminino , Grupos Focais , Zeladoria/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Gerenciamento do Tempo/métodos , Interface Usuário-ComputadorRESUMO
Worldwide, ageing societies are bringing challenges for independent living and healthcare. Health-enabling technologies for pervasive healthcare and sensor-enhanced health information systems offer new opportunities for care. In order to identify, implement and assess such new information and communication technologies (ICT) the 'Lower Saxony Research Network Design of Environments for Ageing' (GAL) has been launched in 2008 as interdisciplinary research project. In this publication, we inform about the goals and structure of GAL, including first outcomes, as well as to discuss the potentials and possible barriers of such highly interdisciplinary research projects in the field of health-enabling technologies for pervasive healthcare. Although GAL's high interdisciplinarity at the beginning slowed down the speed of research progress, we can now work on problems, which can hardly be solved by one or few disciplines alone. Interdisciplinary research projects on ICT in ageing societies are needed and recommended.