bluuebunny/crossref_metadata_2025_split huggingface dataset:
Patient and practice characteristics related to patient’s consent for health data exchange
Authors: Keuper J J , Hek K , van Tuyl LHD , Batenburg R S , Verheij R A 
Published: October 2024

Abstract

Background
Sharing patient health data electronically between healthcare providers can prevent medical errors and improve patient safety. In the Netherlands, exchange of health information is facilitated on a national level and is only allowed with patient consent. Consequently, it is important to know which factors are related to this patient consent.

Methods
Routine electronic health records data from up to 10% of Dutch general practices (sourced from the Nivel Primary Care Database) were utilized, covering the period from 2016 to 2020. We examined whether patient consent for health data exchange varied depending on patient and practice characteristics, which are expected to have a relationship with granting consent for health data exchange. Therefore, multilevel analysis was performed.

Results
The percentage of patients granting consent ranged between 40%-50% in the period 2016 to 2019, while this was 97% in 2020, due to the governmental corona opt-in regulation. Significant disparities were observed across several of the included patient and practice characteristics in relation to patient consent for all the years examined. In most years, patient consent provision varied by gender, age, socioeconomic position, location, and healthcare use. Practice characteristics showed notable differences in patient consent across information systems, patient volumes, and practice types over all years examined.

Conclusions
We observed significant variations in patient consent for health data exchange, both among the included patient (need) and practice characteristics. These differences may stem from unequal exposure to opportunities to grant consent, differences in risk of inadequate communication between healthcare providers, levels of health literacy, and practice resources. These factors should be taken into account by policymakers when further implementing and upscaling the national health data exchange system.

Key messages
• Variations in patient consent for health data exchange were observed among different patient groups and general practices.
• Variations in patient consent for health data exchange may stem from unequal exposure to opportunities to grant consent, levels of health literacy, and practice resources, among other factors.
Validation of the Multidimensional Scale of Perceived Social Support among LGBT population in Serbia
Authors: Stamenkovic Z , Todorovic J , Brkljac N 
Published: October 2024

Abstract

Background
Social support represents the belief that one is valued, cared for, and loved by others in a social network and a lack of it may lead to adverse outcomes such as a relapse into depression or emotional distress in physically ill patients. The Multidimensional Scale of Perceived Social Support (MSPSS) is an instrument aimed to measure an individual’s perception of how much he or she receives outside social support. This study aimed to examine the validity and reliability of the Serbian version of MSPSS in a sample of LGBT population in Serbia.

Methods
The cross-sectional study included 504 respondents, members of the LGBT population living in Serbia. The instrument used was the MSPSS as a self-report measure, containing twelve items rated on a 7-point Likert scale. MSPSS consists of three sub-scales: Family, Friends, and Significant Others. Exploratory (EFA) and confirmatory factor analyses (CFA) were performed with two independent random samples.

Results
The average score on the scale of social support was 5.58±0.84 (scale of social support by family 4.62±1.41, scale of social support by friends 5.93± 1.99, and scale of social support by the significant others 6.20±0.96, respectively). The Cronbach’s alpha for the entire social support scale was α = 0.772. The three-factor structure of the MSPSS was proved with EFA and CFA. The factor loadings varied between 0.630-0.817. The three factors explained a total of 52.68% of the variance (factor 1- 28.62%, factor 2. 13.16%, factor 3- 10,90%). The three-factor model was adopted during the CFA when the three-factor model CFI (comparative fit index) was 0.969.

Conclusions
The MSPSS has shown good reliability, internal validity and construct validity and can be used as a convenient measure of social support among the LGBT population. Both EFA and CFA yield a three-factor structure consistent with the theory underlying the measure’s development.

Key messages
• The results of the study suggest that the Multidimensional Scale of Perceived Social Support has acceptable psychometric properties for use with the LGBT population.
• This study supports the use of the MSPSS for assessing community-based collaboration using the three-factor model among the LGBT population.
Digital health literacy and associated socio-demographic characteristics in the French population
Authors: Quiviger A , Allaire C , du Roscoät E , Mancini J 
Published: October 2024

Abstract

Background
With the development of digital devices in the health field, digital health literacy has become an important issue in promoting and protecting people’s health. Digital health literacy was measured in a representative sample of the French adult population in order to assess its level and to identify the socio-demographic characteristics of individuals with the lowest literacy levels. Comparisons with works carried out in other European countries as well as implications for the implementation of digital interventions will be discussed.

Methods
Digital health literacy was assed using the HLS19-DIGI-HI Instrument. This 8-item scale measuring the skills related to dealing with digital health information was introduced in the 2023 Health Barometer survey, conducted by the French national public health agency. The survey included French-speaking individuals living in France, aged 18-85, selected through randomly generated phone numbers. 3007 persons were interviewed using a computer assisted telephone interview. A continuous score and categories were calculated to determine the level of Digital Health Literacy. Their associations with sociodemographic characteristics were studied using univariate and multivariate analysis.

Results
1902 persons declared they used internet to search information or advice on health on internet in the last 12 months and completed the Digital health literacy questionnaire. 61 % of these individuals have a low level of digital health literacy (29 % “inadequate” and 32% “problematic”). Multiple sociodemographic characteristics were associated with lower levels of literacy in univariate and multivariate analysis.

Conclusions
These results are useful to better understand and assess the digital health literacy of the population according to their socio-demographic characteristics. They will provide a knowledge base to implement web-based interventions for promoting targeted digital health interventions, according to targeted audiences.

Key messages
• This study in large random sample of the French population showed frequent difficulties to deal with online health information.
• Multiple sociodemographic characteristics were associated with digital health literacy and can help to support implementation of targeted digital health interventions.
Unintended pregnancies in the context of intimate partner violence: Findings from the ELSA-Study
Authors: Brzank P J , Jepsen D , Engelhard M , Winter K , Nowak M 
Published: October 2024

Abstract
Intimate partner violence against women (IPV) is a widespread problem with serious consequences for victims and for society. Women affected by IPV have an empirically proven particular risk of unintended pregnancies. ELSA “Experiences and Living Conditions of Unintended Pregnant Women - Counselling and Care Services” is the first study in Germany to analyse the connections between the situations of women and unintended pregnancies. Using an online questionnaire, women from 1) a random representative sample of residents with a child under 6 years of age and 2) a sample of 662 women from abortion facilities or counselling centres were surveyed in 2021. The data (n = 5,101) were analysed in order to compare the life situation and needs of victimized versus non-victimized women. 333 women (6.5% of the total sample; 95% CI [6.2, 7.6]) reported IPV. Victimized women had a 5.6 times higher risk for an unintended pregnancy (95% CI [4.2, 7.5]) and 3.2 times higher risk for an abortion (95% CI [2.0, 5.0]). The pregnancy was sig. more frequently the result of forced sex (CV= .210***). Victims with unintended pregnancies had a sig. poorer mental health before (t(510) = 7.081***), during (t(510) = 5.501***) and after birth (t(456) = 5.234***) as well as before (t(503) = 4.905***), during (t(224) = 3.408) and after (t(503) = 3.352***) abortion. They were sig. more likely to report feelings of guilt and shame (CV = .182***), self-blame (CV = .149***) and anxiety (CV = .190***) after the pregnancy was determined and they received sig. more unsolicited information from the medical staff (CV = .254**). The result shows that victimized women are in an increased risk situation in the context of unintended pregnancies. Health care professionals can play a special role in prevention and intervention. Nationwide awareness-raising training, protocols and commitment are required.

Key messages
• The study confirms international findings on IPV and unintended pregnancies for Germany.
• There is a need for a sensitive approach within the health system to enhance prevention.
Can a zero-shot learning Large Language Model code complex interview data?
Authors: Balt E , Salmi S , Bhulai S , Eikelenboom M , Gilissen R , Creemers D , Popma A , Mérelle S 
Published: October 2024

Abstract

Background
Psychological autopsy is essential to establish theories, explore trends and identify previously unexplored psychosocial risk factors in suicide research. However, qualitative research has been scrutinized for being prone to interpretation bias, problems with accuracy, challenges to reproducibility, and is very time- and cost intensive. The current study aimed to investigate if a Large Language Model can achieve sufficient agreement with a researcher in the deductive coding of interview data obtained in a psychological autopsy study of suicide, to be integrated with qualitative research procedures.

Methods
Data from 38 interviews was deductively coded by a researcher and a LLAMA 3 based language model. The model performance was evaluated in four increasingly difficult coding tasks, including binary classification and data summarization. Intercoder agreement scores were calculated using Cohen’s Kappa.

Results
The preliminary results showed that the LLM achieved substantial agreement with the human coders for the binary classification task (.78). The variability in performance was influenced by code definitions. The results of the quality of LLM interpretation and summarization will also be presented.

Conclusions
State-of-the-art LLM can be easily integrated into the qualitative analyses of psychological autopsy interviews and may improve real time monitoring of suicides. We recommend a human-AI collaborative model, whereby deductive coding by the LLM is complemented by human inductive coding and further interpretation.

Key messages
• Integrating an LLM with qualitative research procedures is feasible in a collaborative model.
• Integrating an LLM with qualitative research procedures allows near real-time monitoring based on qualitative data, which extends to other public health fields.
Collaborative development of open-source outbreak detection tools: Needs, concept and implementation
Authors: vom Felde genannt Imbusch P , Vietor A , Ullrich A , Markus I , Diercke M 
Published: October 2024

Abstract

Issue
The early detection of infectious disease outbreaks through surveillance is critical to initiate targeted public health interventions. Automated outbreak detection helps to identify trends and unusual events. Yet, there is no overview of how many EU countries use outbreak detection systems and what factors hindered their implementation.

Description of the problem
One aim of the Joint Action UNITED4Surveillance (U4S) is to identify EU countries’ requirements for outbreak detection, and based on these, develop and deploy a tool for the timely and accurate detection of outbreaks. Through surveys, interviews and an in-person workshop involving public health experts, we identified uses cases, collected functional and technical requirements for a tool. Subsequently the tool development started in August 2023 as an open-source software process on GitHub.

Results
Despite high interest, only three of the 21 countries that took part in the survey have implemented outbreak detection tools, even though national surveillance systems offer the potential for their use. Reasons for this are limited resources and low prioritization. Experts identified gastrointestinal diseases as one major potential use case and emphasised the necessity of flexible outputs. Tailored to these requirements, data scientists from five European public health institutes developed an open-source R package for signal detection. The tool generates signals based on national surveillance data and enables the user to analyses these results using a dashboard with flexible exploration and generation of a report. The tool is now being piloted locally by ten European public health authorities and its use will be evaluated.

Lessons
There is a need to use automated outbreak detection tools for routine surveillance of infectious diseases in EU countries but often lack resources. Projects like U4S can bring together expertise to build sustainable tools and supporting material that can address the identified needs.

Key messages
• Collaborative and open-source development leads to tools that are well tailored to the needs of the community and foster a high uptake in the usage of these tools.
• The tool enhances surveillance and outbreak detection in countries without the capacities to develop and implement outbreak detection methods for their surveillance systems.
Developing a trustworthy national health data space: public needs and policy implications
Authors: Daniore P , Zavattaro F , Gille F 
Published: October 2024

Abstract

Background
The ongoing development of a national health data space in Switzerland presents an opportunity to transform health delivery and care by enabling large-scale secondary health research. Central to this development is the Health2030 strategy, which calls for the establishment of public trust in the reliability and security of data collection, storage, and exchange.

Methods
We conducted four focus groups across the German, French and Italian-speaking regions of Switzerland to inform the development of the Swiss health data space that fosters public trust. To inform Swiss policy, we held a panel discussion with patient experts and healthcare professionals to translate the focus group findings into governance and public communication requirements. We synthesized our findings using a thematic analysis approach and proposed a guiding health policy strategy.

Results
Citizens perceive the health data space as trustworthy conditional on the delivery of its promised higher levels of transparency, security, and lower risk compared to other data sharing initiatives. To ensure its trustworthiness, citizens call for the provision of value-based consent to control data access based on the actors involved and research purposes, alongside implementing accountability measures for data misuse. Governance framework requirements entail establishing an advisory group for the health data space with sufficient representation of the Swiss population, including members of the public, patient advisory groups, and researchers. Public communication requirements call for ongoing monitoring of public opinion on health data space, alongside establishing public engagement initiatives, such as public fora, to inform ongoing progress.

Conclusions
Policy efforts should prioritize the meaningful involvement of relevant stakeholders throughout all stages of the health data space development to foster trust. Central to these efforts is balancing public expectations with their practical implementation.

Key messages
• For the health data space to be trustworthy, citizens require transparency on their data use and the security measures taken, value-based consent for data access, and accountability measures.
• Diverse representation in governance and continuous public involvement are key policy measures to build public trust in the development of national health data spaces.
One Health Perspectives on Food System Transformation: Insights from the InsectERA Agenda
Authors: Assunção R , Quinteiro P 
Published: October 2024

Abstract

Background
One Health framework recognises the interconnectedness of human, animal, plant and environmental health. With this understanding, it becomes imperative to address challenges such as those posed by food systems through a One Health lens. Food systems pose significant public health challenges, particularly in terms of food safety and security. Pressures from factors such as population growth, changing consumption patterns and intensified production systems, particularly animal-based protein production, contribute to environmental pressures. In addition, environmental changes, including climate change, further threaten food safety and access to healthy food.

Methods
Through the InsectERA agenda, funded as part of the Recovery and Resilience Plan, stakeholders collaborated across sectors to explore the potential of insects as bioindustrial tools to address food system challenges. A structured, integrated approach combining health and sustainability considerations was matured and applied to pilot food products developed through this initiative. Recognising the potential health and sustainability impacts of these products, a comprehensive assessment was carried out.

Results
This study defined a structured, integrated approach to assessing the health and sustainability impacts of foods developed under the InsectERA agenda. Key steps included i) identifying critical issues and questions, ii) prioritising considerations, iii) defining methodologies, iv) collecting and analysing data, and v) integrating results for communication.

Conclusions
The study highlights the importance of integrated approaches in addressing food system transitions. Integrated approaches, guided by the One Health framework, play a critical role in informing policy decisions by providing policy makers with robust evidence. There is an urgent need for food system transformation based on decisions that holistically consider health and sustainability impacts, to ensure the protection of Public Health.

Key messages
• Integrating health and sustainability into the transition of food systems, within the One Health framework, is crucial for identifying options that safeguard Public Health.
• A structured, integrated approach within a multi-stakeholder environment offers robust insights for policy decisions, advancing sustainable food systems.
Organisation of school environment on reopening schools amidst COVID-19: Barriers and facilitators
Authors: Iaochite R T , Matos M M , Costa Filho R A , Carvalho G S , Anastácio Z , Azevedo M , Alves R F , Oliveira L 
Published: October 2024

Abstract

Background
The reopening of schools during the COVID-19 pandemic has had a profound global impact, affecting millions of students, educators, and families worldwide. This organisation study, conducted in collaboration with professionals from Brazil, Mozambique, and Portugal, focuses on the organisation of school environments to ensure education safety and continuity, underscoring the global relevance of our findings.

Methods
A consortium of 12 countries developed a script for the semi-structured online interviews used in this study, which took place between March and December 2021. Focusing on the reorganisation of schools during lockdowns in the classroom, we interviewed 12 native Portuguese speakers involved in this process. We applied thematic analysis using NVivo v.22.0 to transcript interviews.

Results
Results revealed complexities in school reopening during the public health crisis. Key barriers were disparities between public and private schools and inadequate infrastructure. Facilitators included thorough preparation of staff, community engagement, and strong collaboration between the educational and health sectors, along with classroom and school space adaptations.

Conclusions
This study highlighted significant barriers and facilitating factors affecting school reopening during the pandemic. Challenges such as educational inequalities and infrastructure gaps were evident, while effective facilitation involved comprehensive planning and stakeholder engagement. These findings offer valuable insights for strategic planning and professional practice in ensuring safe and continuous education during pandemics.

Key messages
• Global collaboration in this study spotlights the complex challenges and necessary strategies for safely reopening schools amid a pandemic.
• Research underscores the critical role of thorough preparation and community engagement in overcoming educational disparities during crises.
A canine onchocercosis report from the portuguese west region in 2024: implications for Public Health
Authors: Neves D , Ourique M , Magalhães T , Rodrigues N 
Published: October 2024

Abstract

Issue/problem
Onchocerca lupi parasitosis, known as onchocercosis, affects dogs, sporadically cats and humans, posing a public health concern due to possible vectors in the environment. This neglected tropical disease(NTD), has no known human cases outside endemic areas. However, recent reports in non-endemic areas raise concerns about future implications. Climate change has increased the potential risk of disease vectors establishing themselves in previously unaffected areas.

Description of the problem
A case of canine onchocercosis in the West Region of Portugal, made the pet owner look for medical counselling. Primary health care providers contacted the Public Health Unit(PHU) for guidance and actions. There had been no previous reports in this region. In this case report, we explore the potential public health implications, through a one-health approach.

Results
History of the disease was collected, and travel history of the dog revealed that he had lived in the Algarve during 11 years with only a one-and-a-half-month travel to Italy in this period. Literature review revealed reports of previous cases of oncochercosis in the Iberian Peninsula. Collaboration between the PHU, research institutes, and veterinary authorities led to the assumption of probable transmission in the Algarve.

Lessons
Increased vector surveillance is needed, especially in areas associated with animal onchocercosis. Proactive measures reduce transmission risks, protecting both humans and animals. Tracking animal cases is vital for understanding regional environmental factors. PHU’s must conduct thorough risk evaluations and maintain assertive risk communication strategies to address public and pet owner concerns effectively. Adopting a One Health approach improves the understanding of the disease dynamics and enables targeted interventions.

Key messages
• NTD’s transmitted by vectors pose a potential future challenge. This report underscores the need for a One Health approach, with collaborative multidisciplinary efforts to address these challenges.
• Furthermore, systematic interaction and reporting between human, animal, and environmental health authorities are crucial to ensure comprehensive surveillance and mitigation strategies.