bluuebunny/crossref_metadata_2025_split huggingface dataset:
Can we rely on non-randomised studies? Findings from a meta-epidemiological review
Authors: Rejon-Parrilla J C , Salcher-Konrad M , Nguyen M , Davis K , Jonsson P , Naci H 
Published: November 2019

Abstract

Background
Increasingly, health technology assessment (HTA) agencies must decide whether new medicines should be used routinely in the absence of randomised controlled trial (RCT) data, relying solely on non-randomised studies (NRS), which are at high risk of bias due to confounding. Against the background of increased availability and improved methods to analyse non-randomised data (e.g., propensity score methods and instrumental variables), it is important for decision-makers to have guidance on the analysis and interpretation of NRS to inform health economic evaluation. We therefore aimed to systematically and empirically assess the performance of NRS using different analytical methods as compared to RCTs and develop recommendations on the basis of our findings.

Methods
We conducted a large-scale meta-epidemiological review to obtain estimates of the discrepancy in treatment effects in matched RCTs and NRS of pharmacologic interventions from published meta-analyses indexed in MEDLINE and the Cochrane Database of Systematic Reviews. We also consulted with HTA bodies, regulators and academics from five European countries to learn from their experience with using non-randomised evidence.

Results
We compiled the largest dataset of clinical topics with matching RCTs and NRS using various analytical methods to date, covering &gt;100 unique clinical questions. Incorporating information on direction of effect and effect size from &gt;700 unique studies, the dataset can be used to evaluate discrepancies in treatment effects between study designs across a wide range of therapeutic areas.

Conclusions
An empirically based understanding of the risk of bias in NRS is required in order to promote the adequate use of non-randomised evidence as input for health economic decision-making.
Motrial - An Academic and Collaborative Search Engine Dedicated to Behavioural and/or Public Health Intervention Publications
Authors: Ninot G 
Published: November 2019

Abstract

Issue/problem
Trials are the most reliable source of evidence on the efficacy, safety and cost-effectiveness of interventions aimed at preventing, caring or curing. Their number in the field of non-pharmacological interventions (NPIs), especially behavioural interventions, has increased exponentially since 2000. Their methodology is improving with the support of several organisations such as CONSORT, SPIRIT, TIDieR, PRISMA and IBTN. They can fuel meta-analyses and systematic reviews in return of better quality.

Description of the problem
One of the difficulties in carrying out these meta-syntheses is the exhaustive and relevant search of trials. Publications are not always identified in biomedical databases (e.g., PubMed, Embase). New article publishing offers are available to authors such as Open Access journals (e.g., PLOS One, Scientific Reports, Helyion, JAMA Network Open). Data collection of trials is more difficult, longer and subject to biases.

Results
The Plateforme CEPS, which has the general objective of encouraging clinical trials on NPIs, has created a search engine that makes it easier to find these trials. Motrial (www.motrial.fr) distinguishes the main publication from secondary publications and duplicates. It indicates whether the trial has been declared to an ethics committee, registered to the competent authorities and received funding. This academic search engine in English is free. The search can be configured with methodological and ontological criteria. If not already done, the user is invited to join the main publication of the trial with the declaration of its protocol to an official instance. Motrial displays the main characteristics of the trial and its main publication. Each request can be saved, modified, completed.

Lessons
Data collection of non-pharmacological intervention trials is difficult, long, and subject to biases. The free and academic meta-search engine Motrial is a tool that helps to advance knowledge utilisation.
Co-Creation in participatory epidemiology
Authors: Bach M , Santos-Hövener C , Jordan S 
Published: November 2019

Abstract

Background
Participatory epidemiology aims to involve public health professionals, health activists, and community representatives in epidemiological studies. Paramount are equitable research partnerships for identifying the causes of health problems, generating data, and finding ways to address health related issues. Alongside the research process, co-creation informs various aspects of participatory epidemiology.

Methods
A scoping review was conducted to develop the conceptual foundations of participatory epidemiology. Workshops with staff from public health administration and public health practitioners were held to check feasibility of the concept for public health monitoring, policy making and the development of relevant public health recommendations. From this research, principles and practices of co-creation were identified.

Results
Co-creation is of importance for participatory epidemiology. 1) Methodologically: Co-creation asks to apply multiple perspectives (research, practice, communities) in data collection and synthesis, what may require the adaption of a given study design. 2) Research practice: Co-creation in participatory epidemiology means producing epidemiologic evidence while contributing to concrete public health interventions, two goals that have to be balanced. 3) Personal attitudes: In participatory epidemiology academic researchers, practitioners, and community representatives are requested to acknowledge each other as co-researching partners, which can be challenging for each of them.

Conclusions
Co-creation is a prerequisite for establishing equitable research partnerships. In participatory epidemiology, co-creation offers ways to produce meaningful knowledge for research and practice.

Main messages
Participatory epidemiology offers ways of producing epidemiologic evidence while contributing to public health practice. Co-creation is a prerequisite, way, and attitude to conduct meaningful research, hopefully for all of those who are involved.
Accessibility to oral health care of precarious and non precarious populations in Côte d’Ivoire
Authors: Sangare A D , Samba M , Meless G D , Guinan J C , Traore J F , Da Danho V , Adou A J , Bakayoko-Ly R 
Published: November 2019

Abstract

Introduction
The purpose of any health system is to guarantee access to care for the entire population served. However, the socio-economic insecurity situation of people in precarious situations, raises the problem of their access to oral health care considered to be expensive. The objective of this study was to compare the dental status and modalities of oral health care use by people in precarious situations to group of non-precarious population in Abidjan, in Côte d’Ivoire.

Methods
The cross-sectional study was conducted at the University Hospital Center of Treichville. It concerned all users of the dental office of this hospital. Subjects in precarious situations were identified using a screening tool. Was considered to be in a precarious situation, a person living with less than 1.5 USD/day, having no fixed address, looking for a job, having no health insurance or having difficulties in dealing with medical and pharmaceutical costs. We have identified variables for the modalities of oral health care use and follow-up. The frequencies of these variables were calculated and comparisons were made between subjects in precarious and non- precarious situations using the Chi2 test.

Results
256 people participated in the study. The tool for identifying precariousness made it possible to distinguish 128 subjects classified in precarious situations and 128 others in non- precarious situations. The number of missing teeth in people in precarious situations was twice as high as in non-precarious subjects. Renunciation of dental care was more common in the precarious group (46%) than in the non- precarious group (32%). Absenteeism rates at the first two appointments were higher among the precarious (54%) than among the not precarious (46%).

Conclusions
These results show the need to sensitize the population on the importance of oral health and the establishment of social protection mechanisms to ensure greater accessibility to care for people in precarious situations.

Key messages
Improving the oral health of populations, especially vulnerable population groups, requires the establishment of social protection mechanisms to remove the financial barrier to access to care. Educating the public about the importance of oral health for overall good health is essential to improving the use of dental care.
Building bridges between community, primary healthcare and academia for solidarity in health
Authors: Khozhamkul R , Kosherbaeva L , Izmukhambetov T , Tolegenova S , Jurgutis A , Sydykov B , Davletov K 
Published: November 2019

Abstract

Considering Astana declaration on Primary healthcare (PHC) and universal healthcare coverage UN member countries agreed on committing for PHC development. Kazakhstan prepared legal basis for that during ongoing healthcare system reform. Meanwhile, there is no clear mechanism for integration of sectors to address person and community centeredness for health, which has emerged into a need of rethinking engagement between outpatient clinics and their communities. Local NGO “Community health committee” has led the bottom-up initiative in collaboration with Kazakh National Medical University, Outpatient clinic of Almaty State hospital #5, Medeo district mayor’s office and WHO European Center for PHC for creation of an integrated plan to strengthen diseases prevention and health promotion at the district. Project aims to strengthen people centeredness of PHC at Medeo district, through equal integration of all stakeholders into every step of decision-making using community based participatory research framework. Project includes development of teamwork in PHC teams’ through multi-professional training, development of nurses’ competencies for more autonomous work in community, community capacity building and empowerment. After gaining support from all stakeholders, we organized two interactive seminars with community members and PHC teams in order to assess district health needs and build an action plan. Ownership of community members in decision on priority health problem provided community buy-in, high level of engagement and enthusiasm in designing and implementation of the project activities. Voice from empowered community on priority health needs were accounted by local policymakers and led for creation of action plan on identified needs to be implemented in 2019 -2020. One of the main limits of the community engagement is gaining trust and sustainability of the group, we are mitigating it through involvement of academia as an “umbrella”.

Key messages
Project will create a model for equal partnership in disease prevention and health promotion in Kazakhstan. Engaging all key stakeholders based on equal partnership creates sustainable outcomes for health and solidarity.
Youth engagement on health as a political issue
Authors: Eric L 
Published: November 2019

Abstract

Background
In France, young people do not participate in the development of health policy. The latter is built on a representation of the young person who, because of his age, cannot have an opinion and proposals for his health and improve that of others. However, different young people are involved in health actions and propose improvements for the health system and prevention. The communication concerns the ’Re’Pairs Santé’, young people who are committed with Unis-Cité, a national association, to developing health actions with other young people.

Methods
20 ’Re’Pairs santé’ were interviewed in 3 French cities on their motivation for this engagement. Similarly, 80 young beneficiaries of their actions were met in focus groups to get their perception of Re’Pairs santé.

Results
The engagement of Re’Pairs santé is part of a dimension of solidarity, and on their experience as young people to change the way adults and public policies are represented. For other young people, if there is an improvement in their health knowledge, half of them are involved in other local associations and/or are involved in changing health within their own structure.

Conclusions
Health is not a minority issue both in the daily lives of young people and as a potential source of engagement. The Re’Pairs santé investment allows other young people to get involved in other structures. Thus, the social impact is not limited to the transmission of health information but promotes social cohesion and the development of social capital. The place and role of young people in the development of public health policies must be better valued and legitimized in order to better meet their expectations but also to destigmatize a population that has many resources.

Key messages
Fostering youth engagement on health. Youth should be considered as a resource for health policies.
Giving blood: providing treatment, providing knowledge
Authors: Tiberghien P , Gallian P , Morel P , Bougard D , Chiaroni J , Gross S , Djoudi R , Pagès J-C , Toujas F 
Published: November 2019

Abstract

Background
In France, 1,6 million donors contribute 3 million blood donations / year collected and tested by the French public transfusion service (Etablissement Français du Sang - EFS). At each donation, 2 ml plasma of are stored for 3 years for further testing if needed. In addition to providing life-saving blood products, blood donors may also provide knowledge through the sharing of their health data and bioresource collected at time of donation.

Objective
To describe how blood donors can provide knowledge in addition to blood products.

Results
Over the last 10 years, blood donors in France have enabled several studies performed by EFS in collaboration with research and reference laboratories as well as public health authorities. A linked assessment of Ab titers (+ clinical history) in donors having given blood before and after the 2009 H1N1 flu epidemic, as well as measles, rubella and hepatitis E virus seroprevalence studies (+ specific health questionnaires) have generated high value epidemiological data. Screening for arboviruses (such as Zika virus) and hepatitis A virus in donors during epidemics have increased knowledge of infectious spread and disease characteristics. Testing of plasma samples collected before variant Creutzfeldt-Jakob disease occurrence in two donors revealed the presence of circulating prion more than 1 year before diagnosis. A project to further take advantage of such a bio resource is underway. Upon occurrence and notification of a disease (or any pre-defined health event) in one of the 1,4 million repeat blood donors, all samples from prior donations would be gathered in a cohort of samples of all donors having notified an identical health event. Such cohorts would provide valuable samples to assess disease-specific biomarkers at pre-symptomatic phases.

Conclusions
Providing the opportunity to donors to give knowledge in addition to blood can result in production of high value biomedical data. Giving blood, being a public health actor.

Key messages
Blood donors may provide knowledge and bioresources in addition to blood products. Blood donors in France have enabled several large-scale epidemiological studies.
Crowdfunding for unmet medical needs: the case of CAR-T and Gofundme
Authors: Toscano F , Golinelli D , Guicciardi S , O’Donnell E , Rossi S , Messina G , Fantini M P 
Published: November 2019

Abstract

Background
Crowdfunding (CF) is the practice of financing a project by raising money from a large number of people. Many patients use online CF platforms to fund medical needs, whether unmet by their healthcare service - therefore to be sought elsewhere -, or when unable to afford them. CAR-T (Chimeric antigen receptor T-cells) is an innovative therapy approved to treat several types of lymphoma and with potential to treat many other cancers. CAR-T is available in most countries through clinical trials only and its diffusion is limited by high costs. Gofundme is a CF platform ’leader in online medical fundraising’. The objective of this study is to shed some light on the phenomenon of CF for CAR-T therapy, describing the campaigns started on Gofundme.

Methods
We extracted data from CAR-T campaigns started in Europe and publicly available on Gofundme until March 2019. Data related to each campaign has been analyzed and reported through descriptive analyses.

Results
Since 2017, 26 CAR-T treatment campaigns have been started. Due to the privacy policy of the platform, we were able to retrieve data from only 12 of them; 3 campaigns were closed, thus not disclosing enough data to be included. Nine campaigns were studied: 4 from Italy, 4 from the UK, 1 from Spain. The United States were the main destination. The median campaign goal was 180k€. The number of campaign shares on social media and the percentage of goal raised seemed to be linked.

Conclusions
CF is unquestionably a good expression of the Internet: it channels empathy towards important causes, providing tangible help. However, when applied to healthcare - especially to experimental treatments -, several questions arise. Patients affected by treatment resistant cancers may be prone trying new treatments to keep the hope alive, even when indication is missing or scientific evidence is lacking. Policymakers should monitor healthcare related CF campaigns, both for equity and safety reasons.

Key messages
Policymaker should monitor healthcare related CF campaigns, both for equity and safety reasons. Healthcare related crowdfunding campaigns could be interpreted as an indicator of unmet medical needs.
A partnership between a local public health unit and schools to end female genital mutilation
Authors: Paixão M , Carmona A , Capelão H , Silva A 
Published: November 2019

Abstract

Female genital mutilation (FGM) is a violation of human rights and has immediate and long-term health impacts. Our public health unit is in Amadora, one of the regions in Portugal with the highest prevalence of FGM in immigrant communities.
Recognising the importance of education and of early-life interventions in changing beliefs, we partnered with local schools, a non-governmental organisation and child protection services. We developed a book with information and resources for teachers and created a training package for school professionals. This comprehensive school intervention focused on two aspects. First, it focused on prevention, as we trained school professionals, provided risk score indicators and defined actions to take. Second, in health promotion as we compiled ideas and resources on how to approach this subject in classes while debating sexual health, gender inequality, human rights and cultural heritages.
From November 2018 to February 2019 we collected inputs by all partners and tested the instruments in a pilot school with a mixed-methods approach through questionnaires and a focus group.
The book was distributed to all schools in Amadora, to other public health units and institutions. The preliminary evaluation was done by a questionnaire where 72.7% of the respondents found it useful and addressing the key topics and 54.5% found it detailed enough. These results are preliminary, with further evaluation planned for September 2019 and June 2020 to understand both the experience and needs of teachers after implementing the project.
This project has led to schools showing interest in developing closer cooperation in this and in other health topics.
To our knowledge, this is the first school intervention by a public health team focusing on FGM in Portugal. Other countries have materials on FGM for teachers, however we believe our intervention was the first tailored to a local community and in close collaboration with local schools and institutions.

Key messages
There is potential for a closer collaboration with schools to try to end female genital mutilation and to address other health topics. Local public health units should establish and mobilise local networks of institutions and community partners to tackle complex public health problems.
Services for refugees subject to sexual and gender-based violence in Turkey and Sweden
Authors: Ozcurumez S , Akyuz S , Bradby H 
Published: November 2019

Abstract

Background
Sexual and gender-based violence affects an unknown proportion of Syrians seeking refuge from the ongoing conflict. Exile implies a vulnerability to gendered harms with consequent health effects over the short- and long-term. Services for refugees tend to presume physical gendered harms accruing to women prior to exile, with little attention paid to the effects on refugees’ settlement in the new society.

Methods
Interviews with health and social care providers of services to refugees in Sweden (n = 20) and Turkey (n = 20), including international organisations, non-government agencies, municipal and other statutory agents.

Results
Definitions of sexual and gender-based violence that inform service delivery vary greatly between health and social care service providers, with these definitions proving critical for how services are configured and provided. Service providers may consider longer-term health problems arising from refugees’ experience of sexual and gender-based violence, but refugees’ prospects of integration are rarely explicitly addressed. Refugees’ own views on their health and social care needs do not inform the design or development of service provision.

Conclusions
The experience of sexual and gender-based violence by refugees from Syria is widely recognised among health and social care providers in Turkey and Sweden. However, the experience of such violence is rarely addressed as a public health problem, that is, as a social determinant of ill health and, furthermore, an impediment to successful integration. The long-term, ill effects of sexual and gender-based violence, as seen over the lifecourse, are over-looked when considering refugees.

Key messages
Services for refugees who have been subject to sexual and gender-based violence vary in terms of how that violence is understood and which of its outcomes are addressed. Sexual and gender-based violence when experienced by refugees is rarely seen as a public health problem.