Data Sharing in the Context of Health-Related Citizen Science

Authors : Mary A. Majumder, Amy L. McGuire

As citizen science expands, questions arise regarding the applicability of norms and policies created in the context of conventional science. This article focuses on data sharing in the conduct of health-related citizen science, asking whether citizen scientists have obligations to share data and publish findings on par with the obligations of professional scientists.

We conclude that there are good reasons for supporting citizen scientists in sharing data and publishing findings, and we applaud recent efforts to facilitate data sharing.

At the same time, we believe it is problematic to treat data sharing and publication as ethical requirements for citizen scientists, especially where there is the potential for burden and harm without compensating benefit.

DOI : https://doi.org/10.1177/1073110520917044

Reproducible research practices, openness and transparency in health economic evaluations: study protocol for a cross-sectional comparative analysis

Authors : Ferrán Catalá-López, Lisa Caulley, Manuel Ridao, Brian Hutton, Don Husereau, Michael F Drummond, Adolfo Alonso-Arroyo, Manuel Pardo-Fernández, Enrique Bernal-Delgado, Ricard Meneu, Rafael Tabarés-Seisdedos, José Ramón Repullo, David Moher

Introduction

There has been a growing awareness of the need for rigorously and transparent reported health research, to ensure the reproducibility of studies by future researchers.

Health economic evaluations, the comparative analysis of alternative interventions in terms of their costs and consequences, have been promoted as an important tool to inform decision-making.

The objective of this study will be to investigate the extent to which articles of economic evaluations of healthcare interventions indexed in MEDLINE incorporate research practices that promote transparency, openness and reproducibility.

Methods and analysis

This is the study protocol for a cross-sectional comparative analysis. We registered the study protocol within the Open Science Framework (osf.io/gzaxr). We will evaluate a random sample of 600 cost-effectiveness analysis publications, a specific form of health economic evaluations, indexed in MEDLINE during 2012 (n=200), 2019 (n=200) and 2022 (n=200).

We will include published papers written in English reporting an incremental cost-effectiveness ratio in terms of costs per life years gained, quality-adjusted life years and/or disability-adjusted life years. Screening and selection of articles will be conducted by at least two researchers.

Reproducible research practices, openness and transparency in each article will be extracted using a standardised data extraction form by multiple researchers, with a 33% random sample (n=200) extracted in duplicate.

Information on general, methodological and reproducibility items will be reported, stratified by year, citation of the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement and journal. Risk ratios with 95% CIs will be calculated to represent changes in reporting between 2012–2019 and 2019–2022.

Ethics and dissemination

Due to the nature of the proposed study, no ethical approval will be required. All data will be deposited in a cross-disciplinary public repository.

It is anticipated the study findings could be relevant to a variety of audiences. Study findings will be disseminated at scientific conferences and published in peer-reviewed journals.

URL : Reproducible research practices, openness and transparency in health economic evaluations: study protocol for a cross-sectional comparative analysis

DOI : http://dx.doi.org/10.1136/bmjopen-2019-034463

Stratégies numériques de diffusion auprès des décideurs, des résultats des chercheurs en santé publique

Auteurs/Authors : Ilaria Montagni, Will Stahl-Timmins, Lise Monneraud, Tobias Kurth

L’élaboration de politiques fondées sur des données probantes est un phénomène de plus en plus répandu qui encourage les chercheurs et les décideurs à communiquer efficacement entre eux.

Les médias digitaux sont censés faciliter les échanges entre les deux acteurs, mais leur disponibilité et leur utilisation n’ont pas encore été examinées en détail.

Avec une approche interdisciplinaire, cet article vise à fournir une taxonomie des médias digitaux utilisés par les chercheurs et les décideurs pour partager leurs connaissances dans le domaine spécifique de la santé publique.

Dans le cadre de la digital health communication, nous décrivons le web classique, le web 2.0 ainsi que six autres médias digitaux (hypertexte, images, vidéos, audio, infographie et jeux) à disposition des chercheurs et des décideurs en santé.

Ensuite, nous discutons des risques et des possibilités liés à la vulgarisation scientifique en ligne pour l’élaboration des politiques de santé. Enfin, nous formulons des recommandations fondées sur la théorie et sur la pratique destinées aux chercheurs afin qu’ils diffusent au mieux les résultats de leurs recherches sur la santé aux décideurs via Internet.

URL : https://lesenjeux.univ-grenoble-alpes.fr/2019/dossier/02-strategies-numeriques-de-diffusion-aupres-des-decideurs-des-resultats-des-chercheurs-en-sante-publique

La place accordée aux informations scientifiques dans les magazines de santé télévisuels

Auteur/Author : Pascale Mansier

Les magazines de santé télévisuels sont une constante du paysage audiovisuel depuis 60 ans et contribuent à la vulgarisation des connaissances. Depuis 1998, ils sont à l’antenne quotidiennement et en direct, hors weekend.

L’analyse de leur rubriquage depuis cette date permet de rendre compte de la place spécifiquement accordée aux informations scientifiques provenant du monde de la recherche. Les informations scientifiques contribuent pour une part modeste mais constante de la politique éditoriale des magazines de santé.

Les téléspectateurs entendent parler de recherche une à deux fois par semaine dans ces magazines et cette fréquence n’a pas été modulée par la création d’un site Internet dédié aux émissions, alors que celui aurait pu permettre un plus large accès à des connaissances scientifiques.

Dans ces magazines de santé télévisuels pour lesquels les producteurs postulent de la part des téléspectateurs une demande de réponses à des enjeux médicaux, la recherche scientifique, par essence source d’interrogations, d’incertitudes et de remise en question des connaissances, semble jouer un rôle minoritaire.

URL : https://lesenjeux.univ-grenoble-alpes.fr/2019/dossier/03-la-place-accordee-aux-informations-scientifiques-dans-les-magazines-de-sante-televisuels

Results dissemination of registered clinical trials across Polish academic institutions: a cross-sectional analysis

Authors : Karolina Strzebonska, Mateusz T Wasylewski, Lucja Zaborowska, Nico Riede, Susanne Wieschowski, Daniel Strech, Marcin Waligora

Objectives

To establish the rates of publication and reporting of results for interventional clinical trials across Polish academic medical centres (AMCs) completed between 2009 and 2013. We aim also to compare the publication and reporting success between adult and paediatric trials.

Design

Cross-sectional study.

Setting

AMCs in Poland.

Participants

AMCs with interventional trials registered on ClinicalTrials.gov.

Main outcome measure

Results reporting on ClinicalTrials.gov and publishing via journal publication.

Results

We identified 305 interventional clinical trials registered on ClinicalTrials.gov, completed between 2009 and 2013 and affiliated with at least one AMC. Overall, 243 of the 305 trials (79.7%) had been published as articles or posted their summary results on ClinicalTrials.gov.

Results were posted within a year of study completion and/or published within 2 years of study completion for 131 trials (43.0%). Dissemination by both posting and publishing results in a timely manner was achieved by four trials (1.3%).

Conclusions

Our cross-sectional analysis revealed that Polish AMCs fail to meet the expectation for timely disseminating the findings of all interventional clinical trials. Delayed dissemination and non-dissemination of trial results negatively affects decisions in healthcare.

URL : Results dissemination of registered clinical trials across Polish academic institutions: a cross-sectional analysis

DOI : http://dx.doi.org/10.1136/bmjopen-2019-034666

Connecting Users to Articles: An Analysis of the Impact of Article Level Linking on Journal Use Statistics

Author : Michelle Swab

Objective

Electronic resource management challenges and “big deal” cancellations at one Canadian university library contributed to a situation where a number of electronic journal subscriptions at the university’s health sciences library lacked article level linking.

The aim of this study was to compare the usage of journals with article level linking enabled to journals where only journal level linking was available or enabled.

Methods

A list of electronic journal title subscriptions was generated from vendor and subscription agent invoices. Journal titles were eligible for inclusion if the subscription was available throughout 2018 on the publisher’s platform, if the subscription costs were fully funded by the health sciences library, and if management of the subscription required title-by-title intervention by library staff. Of the 356 journal titles considered, 302 were included in the study.

Negative binomial regression was performed to determine the effect of journal vs. article level linking on total COUNTER Journal Report 1 (JR1) successful full-text article requests for 2018, controlling for journal publisher, subject area, journal ranking, and alternate aggregator access.

Results

The negative binomial regression model demonstrated that article level linking had a significant, positive effect on total 2018 JR1 (coef: 0.645; p < 0.001). Article level linking increased the expected total JR1 by 90.7% when compared to journals where article level linking was not available or enabled.

Differences in predicted usage between journals with article level linking and those without article level linking remained significant at various journal ranking levels.

This suggests that usage of both smaller, more specialized journals (e.g., Journal of Vascular Research) and larger, general journals (e.g., New England Journal of Medicine) increases when article level linking is enabled.

Conclusions

This study provides statistical evidence that enabling article level linking has a positive impact on journal usage at one academic health sciences library. Although further study is needed, academic libraries should consider enabling article level linking wherever possible in order to facilitate user access, maximize the value of journal subscriptions, and improve convenience for users.

URL : Connecting Users to Articles: An Analysis of the Impact of Article Level Linking on Journal Use Statistics

DOI : https://doi.org/10.18438/eblip29613