scholarly journals Sharing health research data – the role of funders in improving the impact

F1000Research ◽  
2018 ◽  
Vol 7 ◽  
pp. 1641 ◽  
Author(s):  
Robert F. Terry ◽  
Katherine Littler ◽  
Piero L. Olliaro

Recent public health emergencies with outbreaks of influenza, Ebola and Zika revealed that the mechanisms for sharing research data are neither being used, or adequate for the purpose, particularly where data needs to be shared rapidly. A review of research papers, including completed clinical trials related to priority pathogens, found only 31% (98 out of 319 published papers, excluding case studies) provided access to all the data underlying the paper - 65% of these papers give no information on how to find or access the data. Only two clinical trials out of 58 on interventions for WHO priority pathogens provided any link in their registry entry to the background data. Interviews with researchers revealed a reluctance to share data included a lack of confidence in the utility of the data; an absence of academic-incentives for rapid dissemination that prevents subsequent publication and a disconnect between those who are collecting the data and those who wish to use it quickly.  The role of the funders of research needs to change to address this. Funders need to engage early with the researchers and related stakeholders to understand their concerns and work harder to define the more explicitly the benefits to all stakeholders.  Secondly, there needs to be a direct benefit to sharing data that is directly relevant to those people that collect and curate the data. Thirdly more work needs to be done to realise the intent of making data sharing resources more equitable, ethical and efficient.  Finally, a checklist of the issues that need to be addressed when designing new or revising existing data sharing resources should be created. This checklist would highlight the technical, cultural and ethical issues that need to be considered and point to examples of emerging good practice that can be used to address them.

F1000Research ◽  
2018 ◽  
Vol 7 ◽  
pp. 1641 ◽  
Author(s):  
Robert F. Terry ◽  
Katherine Littler ◽  
Piero L. Olliaro

Recent public health emergencies with outbreaks of influenza, Ebola and Zika revealed that the mechanisms for sharing research data are neither being used, or adequate for the purpose, particularly where data needs to be shared rapidly. A review of research papers, including completed clinical trials related to priority pathogens, found only 31% (98 out of 319 published papers, excluding case studies) provided access to all the data underlying the paper - 65% of these papers give no information on how to find or access the data. Only two clinical trials out of 58 on interventions for WHO priority pathogens provided any link in their registry entry to the background data. Interviews with researchers revealed a reluctance to share data included a lack of confidence in the utility of the data; an absence of academic-incentives for rapid dissemination that prevents subsequent publication and a disconnect between those who are collecting the data and those who wish to use it quickly.  The role of the funders of research needs to change to address this. Funders need to engage early with the researchers and related stakeholders to understand their concerns and work harder to define the more explicitly the benefits to all stakeholders.  Secondly, there needs to be a direct benefit to sharing data that is directly relevant to those people that collect and curate the data. Thirdly more work needs to be done to realise the intent of making data sharing resources more equitable, ethical and efficient.  Finally, a checklist of the issues that need to be addressed when designing new or revising existing data sharing resources should be created. This checklist would highlight the technical, cultural and ethical issues that need to be considered and point to examples of emerging good practice that can be used to address them.


2020 ◽  
Vol 33 ◽  
pp. 01002
Author(s):  
Saskia-Rabea Schrade

Despite efforts to increase scientists’ willingness to share research data political stakeholders and funding agencies, there is still a discrepancy between scientists’ attitude toward data sharing and their actual practice. In a first step, this paper takes a close look at scientists’ definition of research data and the influence of project organization on scientist’ willingness to share data by analyzing interviews with scientists of three different disciplines. As the analysis shows, talking about “data sharing” should always happen in the context of data preparation and its various steps. Additionally, the influence of external factors such as a special form of project organization seems to be limited.


Antioxidants ◽  
2021 ◽  
Vol 10 (2) ◽  
pp. 188
Author(s):  
Małgorzata Makarewicz ◽  
Iwona Drożdż ◽  
Tomasz Tarko ◽  
Aleksandra Duda-Chodak

This review presents the comprehensive knowledge about the bidirectional relationship between polyphenols and the gut microbiome. The first part is related to polyphenols’ impacts on various microorganisms, especially bacteria, and their influence on intestinal pathogens. The research data on the mechanisms of polyphenol action were collected together and organized. The impact of various polyphenols groups on intestinal bacteria both on the whole “microbiota” and on particular species, including probiotics, are presented. Moreover, the impact of polyphenols present in food (bound to the matrix) was compared with the purified polyphenols (such as in dietary supplements) as well as polyphenols in the form of derivatives (such as glycosides) with those in the form of aglycones. The second part of the paper discusses in detail the mechanisms (pathways) and the role of bacterial biotransformation of the most important groups of polyphenols, including the production of bioactive metabolites with a significant impact on the human organism (both positive and negative).


Author(s):  
Francesco Piccialli ◽  
Vincenzo Schiano di Cola ◽  
Fabio Giampaolo ◽  
Salvatore Cuomo

AbstractThe first few months of 2020 have profoundly changed the way we live our lives and carry out our daily activities. Although the widespread use of futuristic robotaxis and self-driving commercial vehicles has not yet become a reality, the COVID-19 pandemic has dramatically accelerated the adoption of Artificial Intelligence (AI) in different fields. We have witnessed the equivalent of two years of digital transformation compressed into just a few months. Whether it is in tracing epidemiological peaks or in transacting contactless payments, the impact of these developments has been almost immediate, and a window has opened up on what is to come. Here we analyze and discuss how AI can support us in facing the ongoing pandemic. Despite the numerous and undeniable contributions of AI, clinical trials and human skills are still required. Even if different strategies have been developed in different states worldwide, the fight against the pandemic seems to have found everywhere a valuable ally in AI, a global and open-source tool capable of providing assistance in this health emergency. A careful AI application would enable us to operate within this complex scenario involving healthcare, society and research.


2020 ◽  
pp. 437-450
Author(s):  
Kailash Krishnan ◽  
Nikola Sprigg

‘Research trials in the older stroke patient’ examines the challenges of research in older people, the phenomenon of ageism, the impact of frailty, trials of acute treatments like intravenous thrombolysis and endovascular therapy, acute lowering of blood pressure, and decompressive hemicraniectomy. Trials looking at secondary prevention, including cardioembolism, role of the newer oral anticoagulants (DOACs), carotid endarterectomy, lipid lowering, antihypertensive therapy, are examined. The broader issue of difficulties in recruiting older people to stroke trials and the potential solutions are discussed. Until recently most participants in clinical trials of stroke have been relatively young with little or no comorbidity. With a group growing more than any other, it becomes a priority to understand the challenges in recruiting and retaining older patients into clinical trials. Barriers to recruitment relate to both researchers and participants; solutions include good communication, logistical support, and innovative study design and sampling. Further research will hopefully narrow the gap to those seen in real-world clinical practice.


2018 ◽  
Vol 4 (1) ◽  
pp. 68-75 ◽  
Author(s):  
H. Spallek ◽  
S.M. Weinberg ◽  
M. Manz ◽  
S. Nanayakkara ◽  
X. Zhou ◽  
...  

Introduction: Increasing attention is being given to the roles of data management and data sharing in the advancement of research. This study was undertaken to explore opinions and past experiences of established dental researchers as related to data sharing and data management. Methods: Researchers were recruited from the International Association for Dental Research scientific groups to complete a survey consisting of Likert-type, multiple-choice, and open-ended questions. Results: All 42 respondents indicated that data sharing should be promoted and facilitated, but many indicated reservations or concerns about the proper use of data and the protection of research subjects. Many had used data from data repositories and received requests for data originating from their studies. Opinions varied regarding restrictions such as requirements to share data and the time limits of investigator rights to keep data. Respondents also varied in their methods of data management and storage, with younger respondents and those with higher direct costs of their research tending to use dedicated experts to manage their data. Discussion: The expressed respondent support for research data sharing, with the noted concerns, complements the idea of developing managed data clearinghouses capable of promoting, managing, and overseeing the data-sharing process. Knowledge Transfer Statement: Researchers can use the results of this study to evaluate and improve management and sharing of research data. By encouraging and facilitating the data-sharing process, research can advance more efficiently, and research findings can be implemented into practice more rapidly to improve patient care and the overall oral health of populations.


Author(s):  
Tessa E Pronk ◽  
Paulien H Wiersma ◽  
Anne van Weerden

While reusing research data has evident benefits for the scientific community as a whole, decisions to archive and share these data are primarily made by individual researchers. For individuals, it is less obvious that the benefits of sharing data outweigh the associated costs, i.e. time and money. In this sense the problem of data sharing resembles a typical game in interactive decision theory, more commonly known as game theory. Within this framework we analyse in this paper how different measures to promote sharing and reuse of research data affect sharing and not sharing individuals. We find that the scientific community can benefit from top-down policies to enhance sharing data even when the act of sharing itself implies a cost. Namely, if (almost) everyone shares, many individuals can gain a higher efficiency as datasets can be reused. Additionally, measures to ensure better data retrieval and quality can compensate for sharing costs by enabling reuse. Nevertheless, an individual researcher who decides not to share omits the costs of sharing. Assuming that the natural tendency will be to use a strategy that will lead to maximisation of individual efficiency it is seen that, as more individuals decide not to share, there is a point at which average efficiency for both sharing and non-sharing researchers becomes lower than was originally the case and scientific community efficiency steadily drops. With this in mind, we conclude that the key to motivate the researcher to share data lies in reducing the costs associated with sharing, or even better, turning it into a benefit.


2021 ◽  
Author(s):  
Iain Hrynaszkiewicz ◽  
James Harney ◽  
Lauren Cadwallader

PLOS has long supported Open Science. One of the ways in which we do so is via our stringent data availability policy established in 2014. Despite this policy, and more data sharing policies being introduced by other organizations, best practices for data sharing are adopted by a minority of researchers in their publications. Problems with effective research data sharing persist and these problems have been quantified by previous research as a lack of time, resources, incentives, and/or skills to share data. In this study we built on this research by investigating the importance of tasks associated with data sharing, and researchers’ satisfaction with their ability to complete these tasks. By investigating these factors we aimed to better understand opportunities for new or improved solutions for sharing data. In May-June 2020 we surveyed researchers from Europe and North America to rate tasks associated with data sharing on (i) their importance and (ii) their satisfaction with their ability to complete them. We received 728 completed and 667 partial responses. We calculated mean importance and satisfaction scores to highlight potential opportunities for new solutions to and compare different cohorts.Tasks relating to research impact, funder compliance, and credit had the highest importance scores. 52% of respondents reuse research data but the average satisfaction score for obtaining data for reuse was relatively low. Tasks associated with sharing data were rated somewhat important and respondents were reasonably well satisfied in their ability to accomplish them. Notably, this included tasks associated with best data sharing practice, such as use of data repositories. However, the most common method for sharing data was in fact via supplemental files with articles, which is not considered to be best practice.We presume that researchers are unlikely to seek new solutions to a problem or task that they are satisfied in their ability to accomplish, even if many do not attempt this task. This implies there are few opportunities for new solutions or tools to meet these researcher needs. Publishers can likely meet these needs for data sharing by working to seamlessly integrate existing solutions that reduce the effort or behaviour change involved in some tasks, and focusing on advocacy and education around the benefits of sharing data. There may however be opportunities - unmet researcher needs - in relation to better supporting data reuse, which could be met in part by strengthening data sharing policies of journals and publishers, and improving the discoverability of data associated with published articles.


Author(s):  
Danielle McConville ◽  
Carolyn Cordery

AbstractThis paper presents a critical analysis of present approaches to studying not-for-profit performance reporting, and implications of research in this area. Focusing on three approaches: content analysis of publicly available performance reporting; quantitative analysis of financial data; and (rarer) mixed/other methods, we consider the impact of these on our knowledge of not-for-profit performance reporting, highlighting gaps and suggesting further research questions and methods. Our analysis demonstrates the important role of regulation in determining the research data available, and the impact of this on research methods. We inter-connect the methods, results and prevailing view of performance reporting in different jurisdictions and argue that this reporting has the potential to influence both charity practices and regulators’ actions. We call for further research in this interesting area. Contribution is made to the methodological literature on not-for-profits, and ongoing international conversations on regulating not-for-profit reporting.


Data ◽  
2020 ◽  
Vol 5 (2) ◽  
pp. 29 ◽  
Author(s):  
Rafael Aleixandre-Benavent ◽  
Antonio Vidal-Infer ◽  
Adolfo Alonso-Arroyo ◽  
Fernanda Peset ◽  
Antonia Ferrer Sapena

This work provides an overview of a Spanish survey on research data, which was carried out within the framework of the project Datasea at the beginning of 2015. It is covered by the objectives of sustainable development (goal 9) to support the research. The purpose of the study was to identify the habits and current experiences of Spanish researchers in the health sciences in relation to the management and sharing of raw research data. Method: An electronic questionnaire composed of 40 questions divided into three blocks was designed. The three Section s contained questions on the following aspects: (A) personal information; (B) creation and reuse of data; and (C) preservation of data. The questionnaire was sent by email to a list of universities in Spain to be distributed among their researchers and professors. A total of 1063 researchers completed the questionnaire. More than half of the respondents (54.9%) lacked a data management plan; nearly a quarter had storage systems for the research group; 81.5% used personal computers to store data; “Contact with colleagues” was the most frequent means used to locate and access other researchers’ data; and nearly 60% of researchers stated their data were available to the research group and collaborating colleagues. The main fears about sharing were legal questions (47.9%), misuse or interpretation of data (42.7%), and loss of authorship (28.7%). The results allow us to understand the state of data sharing among Spanish researchers and can serve as a basis to identify the needs of researchers to share data, optimize existing infrastructure, and promote data sharing among those who do not practice it yet.


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