bluuebunny/crossref_metadata_2025_split huggingface dataset:
Self-determination and self-affirmative paths of trans* and gender diverse people in Portugal: Diverse identities and healthcare
Authors: Moleiro C , Alarcão V , Pinheiro G , Giami A 
Published: October 2024

Abstract

Background
Trans* and gender diverse (TGD) people are very heterogeneous. While legal contexts and healthcare practices have been growingly endorsing self-determination and consent for gender affirmative care in some countries, gender affirmation trajectories need to be understood as unique and fluid processes, constructed and negotiated by each individual in a given social and cultural context. This study aimed to characterize diverse profiles of TGD people in Portugal, regarding individual choices and trajectories in social, legal, and medical gender affirmative processes.

Methods
A questionnaire, first developed in France and used in Brazil, Italy, Norway, and Chile, was adapted to the Portuguese context. The conducted survey is comprised of 120 questions, organized into six sections: 1) sociodemographic variables; 2) gender affirmation processes and medical and psychological care; 3) general health and sexual health; 4) mental health; 5) sexuality and sexual concerns; 6) experiences of discrimination and gender identity. Data were collected from a convenience sample of 115 adults who identified as TGD. Content analysis was performed on the written responses, and later categorized.

Results
Approximately 21% of people identified as men, 17% as trans men, 7% as women, 12% as trans women, 26% as non-binary persons, and 17% as agender or other identifications. Differences were calculated among profiles of TGD participants and their choices for affirmative care, social, and legal transition, revealing an association between the way people self-identify and the request for legal recognition of gender identity, as well as the choices of procedures (or aspirations) for medical affirmation (i.e., hormonal treatments, top surgery, bottom surgery).

Conclusions
The provision of health care practices consistent with the principles of self-determination requires training of health care professionals and adjustment of public policies, to allow for unique trajectories and profiles.
1.P. Round table: How could a perfect monitoring and response system look like?
Authors:   Organised by: Social Physics and Complexity Lab (Portugal),   Chair persons: Joana Gonçalves-Sá (Portugal), Ana Bento (USA)
Published: October 2024

Abstract

Robert FitzRoy, captain of the Beagle, was ridiculed when he started to assemble a network of telegraphs to be able to follow storms at sea: in the 19th century, predicting the weather, even in the short term, was considered impossible. 150 years later, meteorological institutes around the world may have helped prevent millions of deaths. Dynamic and complex systems are particularly difficult to predict: we still don’t know exactly when the glaciers will collapse, when the next variant of a virus will appear, how intense the next earthquake will be. In fact, and as the COVID-19 pandemic has shown, most services are unprepared to adjust to such fast evolving-situations: in general, we are limited to trying to react and adapt, but systematically fail at prediction and planning, with important consequences. Moreover, disease outbreaks, scientific research, public health response(s) and legislation happen at completely different time scales, and are not prepared to communicate with (or even understand) each other. Therefore, a fundamental question is how we can create structures that, similar to what FitzRoy imagined, are prepared to anticipate and respond to health threats, when they appear. During this round table, we will bring together experts that use different perspectives (One Health, Digital Epidemiology, Health Policy) and discuss what is needed to build the “perfect” system, in an ideal world. We will argue in favor of 1) creating efficient systems for collecting and processing good quality data, fundamental for any decision making; 2) training multidisciplinary teams to work on the full pipeline from performing complex analyses, using mathematical and computational tools, to communicating with the decision-makers and the population; 3) prepare institutions to network, nationally and internationally; and 4) simulate different scenarios and design medium-term strategies. We will recognize and highlight many of the challenges of such an integrated approach, from data availability and sharing, to communicating under uncertainty, but also the risks of not even trying to do so. We expect to make very brief presentations, to leave abundant time for audience feedback and discussion.

Key messages
• It is urgent to create structures prepared to anticipate and respond to health threats. These should be local but integrated at the international level.
• Their creation faces many challenges, from data collection and sharing to decision making and communication, that should be recognized and tackled using multidisciplinary, integrative approaches.

Speakers/Panelists
Joana Gonçalves-Sá
Social Physics and Complexity Lab, Lisbon, Portugal
Ana Bento
Cornell University, Ithaca, USA
Daniela Paolotti
ISI Foundation, Turin, Italy
André Peralta-Santos
ENSP, Lisbon, Portugal
The primary healthcare workforce crisis: a comparative assessment of the European region
Authors: Kuhlmann E , Falkenbach M , Brinzac M G , Correia T , Panagioti M , Rechel B , Sagan A , Santric-Milicevic M , Ungureanu M-I , Burau V 
Published: October 2024

Abstract

Background
The healthcare workforce crisis strongly affects the primary healthcare sector, worsening the work conditions of healthcare workers and hampering service delivery and health system resilience. This study introduces a health system and governance approach to identify transformative capacities in health system contexts.

Methods
A qualitative comparative methodology was employed, and a rapid assessment of the primary healthcare workforce was conducted across nine countries: Denmark, Germany, Kazakhstan, Netherlands, Portugal, Romania, Serbia, Switzerland, and the United Kingdom/ England.

Results
Our findings reveal both convergence and pronounced diversity across the healthcare systems, with none fully aligning with the ideal attributes of primary healthcare suggested by WHO. However, across all categories, Denmark and the Netherlands, and to a lesser extent also Kazakhstan, depict closer alignment to this model than the other countries. Workforce composition and skill-mix vary strongly, while disparities persist in education and data availability, particularly within Social Health Insurance systems. Policy responses and interventions span governance, organisational, and professional realms, although with weaknesses in the implementation of policies and a systematic lack of data and evaluation. The WHO primary healthcare model only marginally informs policy decisions, but it may receive some more attention in Kazakhstan.

Conclusions
We conclude that aligning primary healthcare and workforce considerations within the broader health system context may help move the debate forward and build governance capacities to improve resilience in both areas.

Speakers/Panelists
Tiago Correia
NOVA IHMT, Lisbon, Portugal
Viola Burau
Aarhus University, Aarhus C, Denmark
Marius-Ionuț Ungureanu
Babeș-Bolyai University, Cluj-Napoca, Romania
Anna Sagan
WHO European Centre for Primary Health Care, Almaty, Kazakhstan
Monitoring the digital healthcare transition in the Netherlands: Challenges, achievements and future
Authors: Keuper J J , van Tuyl LHD 
Published: October 2024

Abstract
Since 2013, the Netherlands Institute of Health Service Research, along with other Dutch research institutes, has monitored the digital healthcare transition in The Netherlands. Through annual surveys of both healthcare professionals (from primary and secondary care) and users (patients as well as the general population) from 2013 to 2023, trends in digital health utilization and experiences have been tracked. Overall, there has been a steady increase in digital care adoption since 2013, but in 2023, growth among professionals stabilized while slightly rising among users. Some tools saw significant increases, like automatic medicine dispensers and home monitoring, freeing up nurses’ time. Utilization patterns differ among patients according to their educational attainment and age, showing lower usage rates among older individuals and those with lower levels of education. Most professionals, especially nurses, view digital care positively, but they recognize its limitations in solving healthcare challenges entirely. Healthcare professionals believe it offers only a limited contribution to cost management, workload reduction, and job satisfaction and emphasize the need for seamless integration into routine care. User opinions are divided, with those with chronic conditions often expressing skepticism. Both professionals and patients agree that personal experience is crucial in determining its value. Additionally, ensuring user-friendliness and clarifying reimbursement for digital healthcare are essential. This workshop provides an overview of developments in the Netherlands and a discussion of challenges, achievements, and prospects. Particular attention will be paid to the monitoring of digitalization progress and effects, and the use of digital solutions in primary and secondary care.
Monitoring the digital healthcare transition in Italy: Initiatives, metrics and feedback from Primary Care Physicians
Authors: Cascini F , Causio F A , Melnyk A 
Published: October 2024

Abstract
Italy’s healthcare sector has undergone significant digital transformation since 2008, driven by national strategies and reforms overseen by the Ministry of Health, the Ministry of Economy and Finance, and the Agency for Digital Italy. Key initiatives include the establishment of centralized booking systems, electronic health records (EHR), ePrescription, dematerialization of medical reports and disease certificates, patient summary, and telemedicine services. Despite regional variations, progress in the EHR adoption has been notable. Ongoing investments under the 2021 National Recovery Plan aim to further enhance digital healthcare infrastructure by 2025 through the involvement of the Italian National Agency for Regional Healthcare Services (AGENAS). Currently, Italy monitors progress through comprehensive measurement frameworks tracking digital health initiatives’ implementation and impact. These encompass indicators reported quarterly by public healthcare facilities regarding the implementation of patient portals, regional registries, network infrastructure, regional EHR systems (i.e., n° of users), and digital laboratory reports. In parallel, we conducted a cross-sectional survey assessing knowledge, opinions and concerns among primary care physicians (PCPs) following the 2022 reform, which introduced Community Hospitals, Community Houses, and telemedicine in primary care. The survey highlighted mixed opinions and insufficient knowledge among PCPs regarding the novelties. Clearer communication and coordination with territorial services appears necessary. Many GPs are engaging in telemedicine, but digital literacy gaps remain, as only 35.7% believed they had necessary digital literacy. This is an insight into Italy’s digital health roadmap, mainly involving primary care and focusing on achievements, challenges, and future prospects in utilizing digital solutions across healthcare settings.
Digital health spaces in the city of Lisbon. The role of digitalization in linking boundaryless hospitals and smart health cities
Authors: Lapão L 
Published: October 2024

Abstract
Digital transformation is reshaping every aspect of society, including healthcare. The concepts of ‘Boundaryless Hospitals’ (BH) and ‘Smart Health Cities’ (SHC) represent a forward-thinking approach to healthcare that leverages digital technologies to enhance service delivery, operational efficiency and patient outcomes, including healthy mobility. This session delves into the complex role of digitalization in creating interconnected health and spatial environments where the flow of data and resources across physical and virtual barriers is optimized. BH embody a healthcare model where digital tools, health information systems and AI-powered diagnostics are integrated to provide care that transcends traditional hospital walls into the city. This approach not only facilitates greater accessibility and flexibility in patient care but also enhances the capacity for healthcare providers to offer personalized and timely interventions, embracing public health altogether. SHC integrates health technology into urban planning and public health services to create ecosystems that actively contribute to the health and wellbeing of their populations. Using big data analytics, IoT and other digital infrastructures, these cities support sustainable health practices, disease prevention, and efficient crisis response, promoting an overall healthier populace. This session will explore how digital health spaces can bridge the gap between these concepts. Discussions will focus on public health challenges and opportunities, examining the case of the city of Lisbon on how digital platforms can facilitate interactions between healthcare providers, patients, and urban environments. Best practices from pioneering projects around the globe will be highlighted. Participants will engage in comprehensive analyses of Lisbon case that demonstrate successful integration of digital health technologies in various contexts, contributing to the resilience and adaptability of healthcare infrastructures.
Building bridges: mobile mental health care units in four European countries
Authors: Lindert J 
Published: October 2024

Abstract

Background
Individuals living in rural and remote areas may have limited access to mental healthcare due to lack of facilities, socioeconomic reasons, stigma and lack of mental health literacy. To meet the needs and provide needs-based care care mobile mental health care clinics were established in some countries in Europe, including in Belgium, Germany, Greece and in Moldowa. A mobile clinic is a customized motor vehicle that travels to communities to provide mental health care. The mobile clinics are an integral part of the health care system and help ensure access to mental care.

Aims
To describe mobile care clinics in two countries in Europe using a case study design.

Results
Mobile clinics deliver a wide variety of mental health services, are heterogeneous and consist of multidisciplinary teams, including physicians, social workers, and other health professionals. The organization and financing of the Mobile mental health clinics is different in the four countries (e.g. part of the mental health care system in Belgium, and Moldova, part of initiatives in Germany and Greece). Due to data protection no detailed data on patients can be provided at the moment. The structures on mental health care mobile clinics in the four countries will be described in detail in the talk.

Discussion
Mobile clinics often serve as a bridge between communities and the mental health care system. Another important issue in rural areas is the ongoing aging of the population. The number of Elderly patients is expected to rise in the future. The care of those patients is challenging for the mental health and the primary care system. There is a necessity for establishing bridges between mobile clinics and hospital care.
Health information system assessments: Opportunities for international collaboration
Authors: Calleja N , Saso M , Schutte N , Bogaert P , Kessissoglou I , Thissen M , Fehr A , Borg M 
Published: October 2024

Abstract
Since the late 1990s, with the development of European Core Health Indicators (ECHI) and the European Health Interview Survey (EHIS), the EU aims to strengthen its continental database for evidence-informed public health policy and research. BRIDGE Health (2015-2017), InfAct (Information for Action 2018-2021) and PHIRI (Population Health Information Research Infrastructure 2020-2023) projects prepared for the establishment of a sustainable European health information infrastructure. Country health information system (HIS) assessments were core project activities, performed on the basis of the WHO Euro ‘Support Tool to strengthen health information systems’. To serve project objectives, the original top-down Support Tool was modified and implemented in a peer-to-peer approach among project countries. InfAct and PHIRI conducted 9 country peer-assessments each. InfAct assessments were carried out through country visits, targeting overall health information inequalities and good practices. PHIRI performed virtual country visits, focusing on COVID-19 health information flows. The WHO Tool was further adapted by the Joint Action TEHDAS (2021-2023) to assess the readiness of HIS in Europe for the European Health Data Space. Experience with these different iterations led to the revision of the Support Tool in 2021 to include a more expanded and modular approach which enables HIS assessments to opt to focus on specific aspects. To date, a sustainable European health information infrastructure has not been set up. Currently, the EU funds a joint Health Information Network with WHO Euro. Building regional infrastructures for public health and NCDI/MH monitoring and reporting depend on structures and on the political will of supranational organizations and their members. Meanwhile, HIS assessments to improve surveillance, population health and to reduce health information inequalities lend themselves to increased international collaboration and knowledge exchange.
OHL-ALL: a theory-informed and practice-orientated organizational health literacy equity approach
Authors: Bindslev Iversen P , Terkildsen Maindal H 
Published: October 2024

Abstract

Background
The OHL-ALL initiative was launched by Steno Diabetes Center Sjaelland and the Department of Public Health, Aarhus University and the OHL-ALL scientific group in cooperation with EUPHA-HL and M-POHL in November 2023. The OHL-ALL (Organizational Health Literacy for All) approach offers an opportunity to rethink and develop organizational health literacy (OHL) with an explicit normative basis for equity. The goal is to establish a theory-informed, practice-oriented, multifaceted, and implementable approach. In the OHL-ALL approach, we define equity as the normative anchor, and we suggest using the Capabilities Approach to embed improved equity in design, implementation, and evaluation of interventions.

Methods
The process of developing the OHL-ALL was guided by applying core ideas from Amartya Sen’s Capability Approach. Five intervention principles were derived from the existing organizational health literacy literature: organizational change, workforce responsiveness, user involvement and person-centered care, access and navigation and internal and external partnerships. After an international expert working group meeting in November 2023, we formed four work packages.

Results
At the EPH conference, a status of the progress in the four work packages will be presented:
WP1. OHL-ALL Framework development based on capability, fairness, and equity.
WP2. Initiatives and testing of the OHL-ALL framework.
WP3. Evaluation of OHL-ALL (i) the capability approach and (ii) outcome domains.
WP4. Plans for the future, including advocacy and outreach - ideally via a conference in 2026.

Conclusions
The OHL-ALL project presents a novel approach to advancing equity in health by improving users’ capabilities. Based on an explicit normative framework it is expected to offer theoretical and practical guidance for organizations that chose to implement a health literacy approach.
Paediatric iGAS Morbidity and Mortality in Ireland 2022-2023 episodic upsurge
Authors: Cotter O , Foley D , Cloak F , Fallon U , Maoldomhnaigh CÓ , Mc Keown P 
Published: October 2024

Abstract

There was an unseasonal upsurge in invasive Group A Streptococcal (iGAS) activity in Ireland during the 2022/2023 winter period. In particular, there was an increase in the proportion of paediatric infections and a rise in the age specific death rate for those under the age of 18, from 0.10 to 1.43 per 100,000. This review aimed to describe the demographic and clinical factors associated with paediatric iGAS infection during this upsurge. All iGAS cases under the age of 16 years, notified to Public Health between 1st October and 30th June 2023, were included. A review of hospital records for each case was conducted using a standardised electronic data collection proforma. Descriptive, univariate and multivariate analysis was conducted using SPSS statistical package. There was a total of 183 cases of iGAS notified during this upsurge in Ireland. A hospital chart review was conducted for 169 of these cases, giving a response rate of 92.3%. The median age was 4 years (range 0-15,) with 44.4% (75) having a previous healthcare attendance during their illness. Varicella coinfection occurred in 27.8% (47) of cases. There was respiratory viral coinfection in 40.8% (69) of cases, and this was significantly associated with an increased risk of death RR 6.49 (95% CI 4.45 - 29.08) p &lt; 0.05. A respiratory site of infection was also significantly associated with an increased risk of death RR 10.13 (95% CI 2.23 - 45.95) p &lt; 0.001. However, both factors did not remain significant once adjusted for age, sex, ethnicity and deprivation index. This national review demonstrated the significant burden of paediatric iGAS morbidity and mortality during this upsurge. A significant proportion of cases, 37.9% (64) were associated with vaccine preventable illness, with respiratory viral infections and a respiratory site of infection both being significantly associated with an increased risk of death.

Key messages
• A significant proportion of iGAS cases were associated with a vaccine preventable illness.
• A respiratory site of iGAS infection was significantly associated with an increased risk of death in paediatric cases.