bluuebunny/crossref_metadata_2025_split huggingface dataset:
Personalised Medicine in shaping sustainable healthcare: a Delphi survey within the IC2PerMed project
Authors: Beccia F , Causio FA , Farina S , Savoia C , Osti T , Di Marcantonio M , Morsella A , Cadeddu C , Ricciardi W , Boccia S 
Published: October 2022

Abstract

Background
Personalised medicine (PM) has the potential to transform health systems and make them more sustainable, by making the population healthier and allocating resources efficiently. European Union and China have become world leaders in the field of PM, increasing collaborations worldwide. In this context, the EU Commission in 2020 launched the IC2PerMed (Integrating China in the International Consortium for Personalised Medicine) project to provide key solutions to enable the convergence of European and Chinese stakeholders toward a common approach in PM.

Methods
From a mapping exercise of policies and programs in PM in EU and China, we identified 20 priority items for shaping sustainable healthcare. Such items were submitted to several Chinese and European experts in PM involved in a 3-round Delphi survey. Experts were asked to review the items’ content and rate their validity and relevance on a 5-point Likert scale. Priorities reaching a Content Validity Index of more than 79% were included, between 70 and 79% were revised, and less than 70% were excluded.

Results
Of 20 priorities submitted, 9 reached consensus. The priorities hinge on the resources allocation, defining in advance priority investment, and identifying new payment models for public reimbursement, health technology impact, and assessment importance, while integrating end-user perceptions into the whole innovation process. In addition, the pivotal role of multidisciplinary and cross-sectorial collaborations emerged. Ethical, legal, and social implications and the related costs should be always considered in policymaking, evaluation, and management of technological innovation.

Conclusions
Integrating resources and setting a clear agenda for the implementation of PM would lead to a faster and more efficient translation into clinical practice. Developing policies valuing all the stakeholders’ contributions would implement PM adoption.

Key messages
• Healthcare systems sustainability is a priority and PM could make the population healthier and help allocate resources more efficiently, hence reducing the overall costs of healthcare.
• The inter-sectoral collaborations in healthcare are fundamental to achieving the best standard of care. All stakeholders and policymakers should engage to foster sustainability.
Burden of disease assessment for Germany and its regions – results from the BURDEN 2020 study
Authors: Porst M , von der Lippe E , Wengler A , Leddin J , Anton A , Rommel A 
Published: October 2022

Abstract

Background
Epidemiological measures such as incidence, prevalence, or deaths are essential for monitoring population health. However, evaluating them in isolation cannot adequately compare and assess the relative importance of different diseases. Assessments of the burden of disease (BoD) are therefore of growing importance in supporting health policy decisions. Using disability-adjusted life years (DALY) as a summary measure of population health, BoD integrates morbidity and mortality in a transparent approach.

Methods
Within BoD methodology, deviations in the health of the population from an ‘ideal’ health status is quantified in the unit of life years. DALY are the sum of years of life lost due to death (YLL) and years lived with disability (YLD). While YLL describe the gap between age at death and statistical life expectancy, the indicator YLD quantifies years lived with a disability or disease. Calculations were based on different primary and secondary data sources for Germany, especially cause-of-death statistics, epidemiological survey data, and statutory health insurance data.

Results
In Germany, there were about 12 million DALY in 2017, the equivalent of 14,584 DALY per 100,000 population. Coronary heart disease contributes the most to the overall burden of disease, followed by lower back pain and lung cancer. In women, headache disorders and dementias account for more DALY as compared to men. Men have a higher burden of disease from lung cancer or alcohol use disorders. Pain disorders and alcohol use disorders lead the DALY rankings for both sexes in younger adulthood. The burden due to cardiovascular disease, COPD, and diabetes mellitus increases with age and also varies by region.

Conclusions
The results suggest age- and gender-specific prevention as well as regional health care needs. BoD studies therefore provide comprehensive data for population health surveillance and can support health policy decisions.

Key messages
• The importance of specific diseases as measured by DALY differs greatly by age and gender, highlighting the need for targeted prevention measures.
• Regional patterns emerge for cardiovascular disease, COPD, and depressive disorders, among others, which may indicate health care needs.
Implementing Mental Health Promotion Initiatives - Process Evaluation of the ABCs of Mental Health in Denmark
Authors: Cantarero Arevalo L , Hinrichsen C , Koushede VJ , Rich Madsen K , Nielsen L , Santini ZI , Meilstrup C 
Published: October 2022

Abstract
Treatment and prevention alone are unlikely to make a significant difference in reducing the burden of poor mental health and mental illness. Therefore, mental health promotion (MHP) initiatives are advocated. In 2014, the ABCs of mental health (ABCs) partnership was established in Denmark; in the partnership, partner organisations, e.g., municipalities and NGOs, use a research-based framework for MHP, the ABC-framework, to develop and implement MHP initiatives. This presentation has two aims: (1) to outline the overall characteristics of these MHP initiatives; and (2) to explore local coordinator and stakeholder perceptions of the implementation processes and the impact of the MHP initiatives. Questionnaire surveys, individual interviews and group interviews were conducted during 2017-2020. The MHP initiatives were grouped according to three strategies: building MHP capacity, campaign activities to promote mental health awareness and knowledge and establishing and promoting opportunities to engage in mentally healthy activities. The ABC-framework was positively received and viewed as providing relevant knowledge for working with MHP as well as fostering intersectoral and interprofessional collaborations. However, using a bottom-up approach to develop and implement MHP initiatives can be time-consuming and resource demanding, and it requires a deliberate balancing of local adaptability and concrete guidance when engaging stakeholders and implementers. Overall, using the ABC-framework to develop and implement MHP initiatives holds great promise for advancing and promoting MHP practice.
COVID-19 restrictions and NUTS-3 deprivation: multilevel approach in Italy during the second wave
Authors: Dei Bardi L , Acampora A , Di Martino M , Davoli M , Agabiti N , Cesaroni G 
Published: October 2022

Abstract

Background
To face the second COVID-19 wave, Italy implemented a tiered restriction system with different risk levels (yellow=low; orange=medium, red=high). It is unknown whether the effect of the tiers was equal among provinces with varying levels of socioeconomic deprivation (SED). At each restriction level, we analyzed the impact of the province's SED on the SARS-CoV-2 daily reproduction number (Rt).

Methods
We considered the Rt (Nov 2020-May 2021) as the dependent variable and the SED as the independent variable. The Rt was estimated using daily incidence data from the Civil Protection Department as the instantaneous Rt. The province SED was measured using the percentage of individuals whose yearly income was less than 10,000€ (2019 data from the Ministry of Economy and Finance). We used multilevel linear regression models with random intercepts stratified by restriction level to estimate the effect of the SED on Rt (β) and its Standard Error (SE). Our analyses adjusted the estimates for the number of days into the tier first and then for other covariates.

Results
We found different levels and trends of Rt by SED in every restriction. Days-adjusted models found a containing effect for the red and the orange tier, while the Rt had an increasing trend in yellow. Higher SED was associated with higher Rt: β was positive and significant in red (β = 0.004 SE = 0.001) and orange (β = 0.002 SE = 0.001) but not in the lowest tier (β = 0.001 SE = 0.001). We found a significant interaction between the number of days into the restriction and the SED in the complete models. Compared to less deprived, more deprived provinces had slower Rt reduction in the highest tier. However, they had steeper Rt reductions in orange and slower increasing trends in yellow.

Conclusions
The highest restriction had milder effects in more deprived provinces, while lower tiers were more effective. These results underline the importance of accounting for SED when implementing public health measures.

Key messages
• Area-level deprivation can modify the effects of public health measures.
• Socioeconomic characteristics of the areas should be considered when implementing policies aimed to prevent the spread of epidemics.
What the PHIRI federated research infrastructure has achieved so far?
Authors: Gonzalez-Garcia J 
Published: October 2022

Abstract
PHIRI infrastructure follows a federated approach that is governed following the European Interoperability Framework. The vision of PHIRI is to create an infrastructure for individual level data processing following the privacy-by-design principle in a data-centric approach. As a basis to legal interoperability and compliance with the GDPR, the queries or algorithms are moved to the data instead of moving the data. So far, the PHIRI technological developments have focused on a client-server architecture. In this architecture a Coordinator Hub, the server, is in charge of orchestrating the deployment of the data-centric analysis solutions, in the form of R and Python scripts, that will be later executed in the partner nodes (data hubs), the clients. To perform the orchestration the Coordinator Hub encapsulates the scripts in software containers, using Docker images; all the outputs are published in Zenodo. The software containers are then deployed manually from Zenodo in the partner nodes and executed by its IT specialists using their own individual level data - the software containers have represented the technical interoperability layer. The data used on each partner has been previously adapted to a common data model (CDM) and the quality of the dataset has been assessed against the data model by each partner -this has represented the semantic interoperability layer. Finally, the outputs of the analysis's execution are aggregated data that are sent back to the Coordinator Hub to perform a comparative analysis. This stepwise approach has been tested in various research questions promoted by a leading researcher and agreed by the partner nodes who act as data hubs. A help-desk services and a developer's forum and a help-desk service have been set up to ease the implementation and deployment of the research queries - these both have represented the organisational interoperability layer
An enhanced version of the PHIRI infrastructure: improving the technological solutions
Authors: Derycke P 
Published: October 2022

Abstract
The proof of concept tested by PHIRI consisted of the development of several research questions in multiple data hubs using a federated approach. It was possible to embed the use cases’ analytical pipelines in a portable standalone (i.e. docker image) and distribute it in different health data hubs and technological environments sources for execution. The tested solution has the advantage of not moving sensitive data out of the silos and thus protecting privacy - the code meets data and not the opposite. Some precious lessons provide guidance on how to further develop the PHIRI infrastructure. 1) A deep knowledge on what data is available in the different data hubs of a federation is key since the basis for the development of a research query is the construction of a data model that is common to all the nodes in the federation. In an eventual enhanced PHIRI infrastructure, a solution will be implementing a semantic information system that allows the exchange of metadata using federated and interoperable metadata catalogues based on Semantic RDF graph databases, compliant with the W3C DCAT metadata standard and exposing the end-points of the SPARQL querying language of the Web of linked-data. 2) Making available training samples mimicking real-world data within the docker image has been of high added-value for the development of the use cases’ analytical pipelines. In an eventual enhanced PHIRI infrastructure, a generalisation could consist of setting up a “knowledge hub” where synthetic data, twinning the population, data would allow any expert users to search and find data through federated queries and prepare and train their analytical pipelines; the “knowledge hub” would provide a computational environment (e.g. Jupyter as a service playground), the necessary tools (i.e. cookbooks and capacity building services) and training samples to answer research questions, with the advantage of using data that is anonymous by nature and open access.
Barriers and Facilitators to Healthcare Service Access among Persons with Spinal Cord Injury (SCI)
Authors: Bychkovska O , Egen C , Strøm V , Juocevicius A , Tederko P , Arora M , Rizzo Battistella L , Engkasan JP , Gemperli A 
Published: October 2022

Abstract

Background
Despite having a high healthcare need, persons with complex conditions are less likely to receive comprehensive care. Individuals with SCI experience difficulties accessing services 2-4 times more than the general population. There is little agreement concerning the factors that influence these access restrictions. Few studies focus on health system impact on characteristics on access.

Objective
To outline barriers and facilitators to service access among persons with SCI across 22 countries in terms of health system characteristics

Methods
InSCI(2017): 1st community survey on experience of persons with SCI, 12591 participants, 22 countries (Australia, Brazil, China, France, Germany, Greece, Indonesia, Italy, Japan, Lithuania, Malaysia, Morocco, the Netherlands, Norway, Poland, Romania, South Africa, South Korea, Spain, Switzerland, Thailand, USA).

Data analysis
1. Hierarchical cluster analysis based on Gower distance (to group systems by access restrictions: Acceptability, Approachability, Availability, Affordability, Appropriateness).
2. Generalized linear mixed-effects decision tree (to explore the association of system characteristics and access, including WHO and OECD system indicators (e.g. UHC index, expenditure, human resources). Missing values were imputed with missforest.

Results
12% of persons with SCI reported having an access restriction, most of them (7%) with Availability. By country, the highest unmet needs were reported in Poland (25%), Germany, Lithuania, and Romania (13).
1. Cluster analysis: 7 health systems clusters (groups) were identified.
2. By June 2022, we will have the results of the second analysis: the association of system characteristics with access and how it is modified by socio-demographic and medical factors.

Expected conclusions
The study identifies factors a country could modify in order to improve access and strengthen the system for persons with SCI/disability, that might be relevant to general population as well.

Key messages
• Persons with SCI often experience similar access restrictions across countries, incl. those with high-performing health systems. System strengthening in this area is further required in all countries.
• Health systems are fragmented, e.g. healthcare quality and access inside a country differs by region, urban/rural setting etc., hence, the systems are challenging to classify.
The integrated GOR-COVID-19 health monitor: quarterly reporting (“short-cycle monitoring”)
Authors: Derks M , Baliatsas C , Dückers M , Bosmans M , Marra E 
Published: October 2022

Abstract

Introduction/objective
Given the capricious nature of COVID-19, infections and accompanying restrictive measures to reduce spread of the virus are known to strongly vary over time. The impact of the corona crisis on the mental and physical health of the general population may fluctuate accordingly. The quarterly monitoring research line is aimed to monitor the health impact of the corona crisis over time on a high frequency basis.

Methods
This is achieved through a multi-method approach, combining: a) survey data on perceived impact of corona measures and several health outcomes from two representative panels (∼ 5.000 adolescents/young adults aged 12 and 25 years; ∼ 5.000 adults aged 26+ years), and b) surveillance data of acute health problems from the Nivel Primary Care Database (∼1,6 million patients from 380 general practitioners). Data collection started in September 2021 and continues during the five-year monitoring program. Panel data is collected every quarter; Nivel surveillance data is collected weekly. Our contribution to the EUPHA conference will include data up and until September 2022 (i.e. five rounds of survey and surveillance data).

Results
Preliminary results from September 2021 through March 2022 indicate that adolescents/young adults reported worse mental and physical health outcomes compared to adults. Moreover, they experienced a more negative impact of corona measures. Accordingly, their mental health related problems, including suicide ideation, spiked between December 2021 and February 2022, a period characterized by highly restrictive COVID-19-measures.

Discussion
The quarterly monitoring research line showcase the relevance and feasibility of integrating multiple data sources in understanding the short- and long-term effect of the corona crisis. The results increase our understanding in the potential adverse effects of corona-related restrictive measures on population health, potentially aiding policy making and health promotion.
The integrated GOR-COVID-19 health monitor: annual reporting (“long-cycle monitoring”)
Authors: Baliatsas C , Meerdink A , Tak N , Dückers M , Geuijen P , Marra E , Bosmans M 
Published: October 2022

Abstract

Introduction
Because of foreseeable COVID-19- related mental and physical health risks for the general population, a longitudinal health monitor was launched in the Netherlands. The monitoring program includes multiple methods. The current contribution places an emphasis on the so-called “long-cycle” monitoring activities at the national and regional level. The aim is to produce (bi-)annual reports on developments in health status of the general population and several potentially vulnerable subgroups (e.g. psychological and somatic comorbidities, lower socio-economic status).

Methods
Primary care registrations and questionnaire data were used. Both depend on existing methods of data collection, cover a broad spectrum of health aspects and offer the possibility of pre-COVID-19-comparison. Primary care data were obtained from electronic health records of general practices in the Nivel Primary Care Database. Large-scale survey research with questionnaires was conducted in all the 25 health regions of the Netherlands among 2nd and 4th graders in high schools, adults, elderly and young adults (16-25 years old). Where possible, data were combined with data on socio-economic status and additional health aspects from Statistics Netherlands (CBS).

Results
The first results from both data sources show that the COVID-19 pandemic undeniably had an effect on the mental health of youth. Compared to 2019, there was a general decrease in overall health and happiness in 2020 and a perceivable increase in social problems as well as health symptoms such as lack of smell and taste. Furthermore, a smaller groups of people experienced more psychological symptoms, serious problems like suicidal thoughts and PTSD symptomatology.

Discussion
Adverse effects of the pandemic on youth are already visible in the first year after the outbreak. It is crucial to closely monitor the course of this health impact in the years to come, based on the combination of large, representative databases.
European Regional and Local Health Authorities (EUREGHA)
Authors: Calabro M 
Published: October 2022

Abstract
EUREGHA's vision is to ensure that the local and regional perspective is represented in EU health policy because local and regional authorities are the natural interface between citizens and European institutions, being the bridging bodies between policies and practices and the closest organizations to the concept of communities. We are the only European network prioritizing the representation of local and regional health authorities at EU level, as they fulfil a key role in improving efficiency, quality, and accessibility of healthcare systems and services. EUREGHA understands their specific needs and works tirelessly to represent regional and local health authorities in EU health policy, to amplify their voices as a means to improve European public health and healthcare. Through advocacy, policy monitoring, profile promotion, partnerships, and project development, EUREGHA facilitates and promotes collaboration between its members, EU institutions, pan-European health networks and other healthcare stakeholders. Network activities and projects are implemented upon a strategic background of “ways to make things happen” such as value based healthcare, smart specialization strategies and skills for innovation and digital transformation - on one side - and along thematic and field objectives such as cross-border healthcare, cancer, obesity, mental health and ageing - on the other side. Lower Austria is a long-standing member and Vice-Chair of EUREGHA.