Dataset Information

A novel approach to sharing all available information from funded health research: the NIHR Journals Library.

ABSTRACT: Relevant information on health research must be made publicly available in an accurate, timely and accessible manner if evidence is to inform practice and benefit patient care. Failure to publish research information represents a significant waste of research funds. However, recent studies have demonstrated that non-publication and selective or biased reporting remains a significant problem. The role of online publications in rectifying these issues by providing open access to study information is increasingly recognised.This paper details a novel approach to publishing research information developed by the National Institute for Health Research (NIHR), a major funder of health research in the United Kingdom. The NIHR has enhanced its Journals Library ( www.journalslibrary.nihr.ac.uk ), providing an online repository of information from research funded through five programmes. We describe how the NIHR Journals Library provides a 'thread' of relevant information for each study, including protocols, participant information sheets, data linkages, final reports, publications and diverse knowledge products. We also discuss the Library as a 'living' resource, one that is updated as each study progresses from inception to completion. Finally, we consider the implications of the Library for the NIHR, other journals and research teams submitting information.Openly publishing information from funded research in the NIHR Journals Library serves as a model of knowledge sharing, maximising return on investment and enhancing the usability and replicability of research findings for different evidence-user communities. The Library also supports wider 'research on research' ambitions, enabling users to interrogate the repository of NIHR-funded studies, enhancing the understanding of research commissioning, design, dissemination and impact. Video abstract: www.youtube.com/watch?v=8H03uxN_iTE .

SUBMITTER: Wright D

PROVIDER: S-EPMC6069813 | biostudies-other | 2018 Jul

REPOSITORIES: biostudies-other

ACCESS DATA

Publications

A novel approach to sharing all available information from funded health research: the NIHR Journals Library.

Wright David D Williams Elaine E Bryce Colin C le May Andrée A Stein Ken K Milne Ruairidh R Walley Tom T

Health research policy and systems 20180731 1

<h4>Background</h4>Relevant information on health research must be made publicly available in an accurate, timely and accessible manner if evidence is to inform practice and benefit patient care. Failure to publish research information represents a significant waste of research funds. However, recent studies have demonstrated that non-publication and selective or biased reporting remains a significant problem. The role of online publications in rectifying these issues by providing open access to ...[more]

PMID: 30064444

Similar Datasets

Project description:BackgroundIn cluster randomised controlled trials (cRCTs), groups of individuals (rather than individuals) are randomised to minimise the risk of contamination and/or efficiently use limited resources or solve logistic and administrative problems. A major concern in the primary analysis of cRCT is the use of appropriate statistical methods to account for correlation among outcomes from a particular group/cluster. This review aimed to investigate the statistical methods used in practice for analysing the primary outcomes in publicly funded cluster randomised controlled trials, adherence to the CONSORT (Consolidated Standards of Reporting Trials) reporting guidelines for cRCTs and the recruitment abilities of the cluster trials design.MethodsWe manually searched the United Kingdom's National Institute for Health Research (NIHR) online Journals Library, from 1 January 1997 to 15 July 2021 chronologically for reports of cRCTs. Information on the statistical methods used in the primary analyses was extracted. One reviewer conducted the search and extraction while the two other independent reviewers supervised and validated 25% of the total trials reviewed.ResultsA total of 1942 reports, published online in the NIHR Journals Library were screened for eligibility, 118 reports of cRCTs met the initial inclusion criteria, of these 79 reports containing the results of 86 trials with 100 primary outcomes analysed were finally included. Two primary outcomes were analysed at the cluster-level using a generalized linear model. At the individual-level, the generalized linear mixed model was the most used statistical method (80%, 80/100), followed by regression with robust standard errors (7%) then generalized estimating equations (6%). Ninety-five percent (95/100) of the primary outcomes in the trials were analysed with appropriate statistical methods that accounted for clustering while 5% were not. The mean observed intracluster correlation coefficient (ICC) was 0.06 (SD, 0.12; range, - 0.02 to 0.63), and the median value was 0.02 (IQR, 0.001-0.060), although 42% of the observed ICCs for the analysed primary outcomes were not reported.ConclusionsIn practice, most of the publicly funded cluster trials adjusted for clustering using appropriate statistical method(s), with most of the primary analyses done at the individual level using generalized linear mixed models. However, the inadequate analysis and poor reporting of cluster trials published in the UK is still happening in recent times, despite the availability of the CONSORT reporting guidelines for cluster trials published over a decade ago.

Project description:BACKGROUND:As the US health care system is embracing data-driven care, personal health information (PHI) has become a valuable resource for various health care stakeholders. In particularly, health consumers are expected to autonomously manage and share PHI with their health care partners. To date, there have been mixed views on the factors influencing individuals' health data-sharing behaviors. OBJECTIVE:This study aimed to identify a key factor to better understand health information sharing behavior from a health consumer's perspective. We focused on daily settings, wherein health data-sharing behavior becomes a part of individuals' daily information management activities. Considering the similarity between health and finance information management, we explicitly examined whether health consumers' daily habit of similar data sharing from the financial domain affects their PHI-sharing behaviors in various scenarios. METHODS:A Web-based survey was administered to US health consumers who have access to and experience in using the internet. We collected individual health consumers' intention to share PHI under varying contexts, habit of financial information management (operationalized as internet banking [IB] use in this paper), and the demographic information from the cross-sectional Web-based survey. To isolate the effect of daily IB on PHI-sharing behaviors in everyday contexts, propensity score matching was used to estimate the average treatment effect (ATE) and average treatment effect on the treated (ATET) regarding IB use. We balanced the treatment and control groups using caliper matching based on the observed confounding variables (ie, gender, income, health status, and access to primary care provider), all of which resulted in a minimal level of bias between unmatched and matched samples (bias <5%). RESULTS:A total of 339 responses were obtained from a cross-sectional Web-based survey. The ATET results showed that in terms of sharing contents, those who used IB daily were more likely to share general information (P=.01), current information (P=.003), and entire data (P=.04). Regarding occasions for sharing occasions, IB users were prone to share their information in all cases (P=.02). With regard to sharing recipients, daily IB users were more willing to share their personal health data with stakeholders who were not directly involved in their care, such as health administrators (P=.05). These results were qualitatively similar to the ATE results. CONCLUSIONS:This study examined whether daily management of similar information (ie, personal financial information) changes health consumers' PHI-sharing behavior under varying sharing conditions. We demonstrated that daily financial information management can encourage health information sharing to a much broader extent, in several instances, and with many stakeholders. We call for more attention to this unobserved daily habit driven by the use of various nonhealth technologies, all of which can implicitly affect patterns and the extent of individuals' PHI-sharing behaviors.

Project description:Evidence-informed health policymaking logically depends on timely access to research evidence. To our knowledge, despite the substantial political and societal pressure to enhance the use of the best available research evidence in public health policy and program decision making, there is no study addressing availability of peer-reviewed research in Canadian health ministries.To assess availability of (1) a purposive sample of high-ranking scientific journals, (2) bibliographic databases, and (3) health library services in the fourteen Canadian health ministries.From May to October 2011, we conducted a cross-sectional survey among librarians employed by Canadian health ministries to collect information relative to availability of scientific journals, bibliographic databases, and health library services. Availability of scientific journals in each ministry was determined using a sample of 48 journals selected from the 2009 Journal Citation Reports (Sciences and Social Sciences Editions). Selection criteria were: relevance for health policy based on scope note information about subject categories and journal popularity based on impact factors.We found that the majority of Canadian health ministries did not have subscription access to key journals and relied heavily on interlibrary loans. Overall, based on a sample of high-ranking scientific journals, availability of journals through interlibrary loans, online and print-only subscriptions was estimated at 63%, 28% and 3%, respectively. Health Canada had a 2.3-fold higher number of journal subscriptions than that of the provincial ministries' average. Most of the organisations provided access to numerous discipline-specific and multidisciplinary databases. Many organisations provided access to the library resources described through library partnerships or consortia. No professionally led health library environment was found in four out of fourteen Canadian health ministries (i.e. Manitoba Health, Northwest Territories Department of Health and Social Services, Nunavut Department of Health and Social Services and Yukon Department of Health and Social Services).There is inequity in availability of peer-reviewed research in the fourteen Canadian health ministries. This inequity could present a problem, as each province and territory is responsible for formulating and implementing evidence-informed health policies and services for the benefit of its population.

Project description:BackgroundMany scholarly journals have established their own data-related policies, which specify their enforcement of data sharing, the types of data to be submitted, and their procedures for making data available. However, except for the journal impact factor and the subject area, the factors associated with the overall strength of the data sharing policies of scholarly journals remain unknown. This study examines how factors, including impact factor, subject area, type of journal publisher, and geographical location of the publisher are related to the strength of the data sharing policy.MethodsFrom each of the 178 categories of the Web of Science's 2017 edition of Journal Citation Reports, the top journals in each quartile (Q1, Q2, Q3, and Q4) were selected in December 2018. Of the resulting 709 journals (5%), 700 in the fields of life, health, and physical sciences were selected for analysis. Four of the authors independently reviewed the results of the journal website searches, categorized the journals' data sharing policies, and extracted the characteristics of individual journals. Univariable multinomial logistic regression analyses were initially conducted to determine whether there was a relationship between each factor and the strength of the data sharing policy. Based on the univariable analyses, a multivariable model was performed to further investigate the factors related to the presence and/or strength of the policy.ResultsOf the 700 journals, 308 (44.0%) had no data sharing policy, 125 (17.9%) had a weak policy, and 267 (38.1%) had a strong policy (expecting or mandating data sharing). The impact factor quartile was positively associated with the strength of the data sharing policies. Physical science journals were less likely to have a strong policy relative to a weak policy than Life science journals (relative risk ratio [RRR], 0.36; 95% CI [0.17-0.78]). Life science journals had a greater probability of having a weak policy relative to no policy than health science journals (RRR, 2.73; 95% CI [1.05-7.14]). Commercial publishers were more likely to have a weak policy relative to no policy than non-commercial publishers (RRR, 7.87; 95% CI, [3.98-15.57]). Journals by publishers in Europe, including the majority of those located in the United Kingdom and the Netherlands, were more likely to have a strong data sharing policy than a weak policy (RRR, 2.99; 95% CI [1.85-4.81]).ConclusionsThese findings may account for the increase in commercial publishers' engagement in data sharing and indicate that European national initiatives that encourage and mandate data sharing may influence the presence of a strong policy in the associated journals. Future research needs to explore the factors associated with varied degrees in the strength of a data sharing policy as well as more diverse characteristics of journals related to the policy strength.

Dataset Information

A novel approach to sharing all available information from funded health research: the NIHR Journals Library.

Publications

A novel approach to sharing all available information from funded health research: the NIHR Journals Library.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets