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Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study.

ABSTRACT: This study informs efforts to improve the discoverability of and access to biomedical datasets by providing a preliminary estimate of the number and type of datasets generated annually by research funded by the U.S. National Institutes of Health (NIH). It focuses on those datasets that are "invisible" or not deposited in a known repository.We analyzed NIH-funded journal articles that were published in 2011, cited in PubMed and deposited in PubMed Central (PMC) to identify those that indicate data were submitted to a known repository. After excluding those articles, we analyzed a random sample of the remaining articles to estimate how many and what types of invisible datasets were used in each article.About 12% of the articles explicitly mention deposition of datasets in recognized repositories, leaving 88% that are invisible datasets. Among articles with invisible datasets, we found an average of 2.9 to 3.4 datasets, suggesting there were approximately 200,000 to 235,000 invisible datasets generated from NIH-funded research published in 2011. Approximately 87% of the invisible datasets consist of data newly collected for the research reported; 13% reflect reuse of existing data. More than 50% of the datasets were derived from live human or non-human animal subjects.In addition to providing a rough estimate of the total number of datasets produced per year by NIH-funded researchers, this study identifies additional issues that must be addressed to improve the discoverability of and access to biomedical research data: the definition of a "dataset," determination of which (if any) data are valuable for archiving and preservation, and better methods for estimating the number of datasets of interest. Lack of consensus amongst annotators about the number of datasets in a given article reinforces the need for a principled way of thinking about how to identify and characterize biomedical datasets.

SUBMITTER: Read KB

PROVIDER: S-EPMC4514623 | biostudies-other | 2015

REPOSITORIES: biostudies-other

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Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study.

Read Kevin B KB Sheehan Jerry R JR Huerta Michael F MF Knecht Lou S LS Mork James G JG Humphreys Betsy L BL

PloS one 20150724 7

<h4>Objective</h4>This study informs efforts to improve the discoverability of and access to biomedical datasets by providing a preliminary estimate of the number and type of datasets generated annually by research funded by the U.S. National Institutes of Health (NIH). It focuses on those datasets that are "invisible" or not deposited in a known repository.<h4>Methods</h4>We analyzed NIH-funded journal articles that were published in 2011, cited in PubMed and deposited in PubMed Central (PMC) t ...[more]

PMID: 26207759

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Project description:BackgroundThe widespread adoption of smartphones provides researchers with expanded opportunities for developing, testing and implementing interventions. National Institutes of Health (NIH) funds competitive, investigator-initiated grant applications. Funded grants represent the state of the science and therefore are expected to anticipate the progression of research in the near future.ObjectiveThe objective of this paper is to provide an analysis of the kinds of smartphone-based intervention apps funded in NIH research grants during the five-year period between 2014 and 2018.MethodsWe queried NIH Reporter to identify candidate funded grants that addressed mHealth and the use of smartphones. From 1524 potential grants, we identified 397 that met the requisites of including an intervention app. Each grant's abstract was analyzed to understand the focus of intervention. The year of funding, type of activity (eg, R01, R34, and so on) and funding were noted.ResultsWe identified 13 categories of strategies employed in funded smartphone intervention apps. Most grants included either one (35.0%) or two (39.0%) intervention approaches. These included artificial intelligence (57 apps), bionic adaptation (33 apps), cognitive and behavioral therapies (68 apps), contingency management (24 apps), education and information (85 apps), enhanced motivation (50 apps), facilitating, reminding and referring (60 apps), gaming and gamification (52 apps), mindfulness training (18 apps), monitoring and feedback (192 apps), norm setting (7 apps), skills training (85 apps) and social support and social networking (59 apps). The most frequently observed grant types included Small Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) grants (40.8%) and Research Project Grants (R01s) (26.2%). The number of grants funded increased through the five-year period from 60 in 2014 to 112 in 2018.ConclusionsSmartphone intervention apps are increasingly competitive for NIH funding. They reflect a wide diversity of approaches that have significant potential for use in applied settings.

Project description:BackgroundAdults living with overweight/obesity are eligible for publicly funded weight management (WM) programmes according to national guidance. People with the most severe and complex obesity are eligible for bariatric surgery. Primary care plays a key role in identifying overweight/obesity and referring to WM interventions. This study aimed to (1) describe the primary care population in England who (a) are referred for WM interventions and (b) undergo bariatric surgery and (2) determine the patient and GP practice characteristics associated with both.Methods and findingsAn observational cohort study was undertaken using routinely collected primary care data in England from the Clinical Practice Research Datalink linked with Hospital Episode Statistics. During the study period (January 2007 to June 2020), 1,811,587 adults met the inclusion criteria of a recording of overweight/obesity in primary care, of which 54.62% were female and 20.10% aged 45 to 54. Only 56,783 (3.13%) were referred to WM, and 3,701 (1.09% of those with severe and complex obesity) underwent bariatric surgery. Multivariable Poisson regression examined the associations of demographic, clinical, and regional characteristics on the likelihood of WM referral and bariatric surgery. Higher body mass index (BMI) and practice region had the strongest associations with both outcomes. People with BMI ≥40 kg/m2 were more than 6 times as likely to be referred for WM (10.05% of individuals) than BMI 25.0 to 29.9 kg/m2 (1.34%) (rate ratio (RR) 6.19, 95% confidence interval (CI) [5.99,6.40], p < 0.001). They were more than 5 times as likely to undergo bariatric surgery (3.98%) than BMI 35.0 to 40.0 kg/m2 with a comorbidity (0.53%) (RR 5.52, 95% CI [5.07,6.02], p < 0.001). Patients from practices in the West Midlands were the most likely to have a WM referral (5.40%) (RR 2.17, 95% CI [2.10,2.24], p < 0.001, compared with the North West, 2.89%), and practices from the East of England least likely (1.04%) (RR 0.43, 95% CI [0.41,0.46], p < 0.001, compared with North West). Patients from practices in London were the most likely to undergo bariatric surgery (2.15%), and practices in the North West the least likely (0.68%) (RR 3.29, 95% CI [2.88,3.76], p < 0.001, London compared with North West). Longer duration since diagnosis with severe and complex obesity (e.g., 1.67% of individuals diagnosed in 2007 versus 0.34% in 2015, RR 0.20, 95% CI [0.12,0.32], p < 0.001), and increasing comorbidities (e.g., 2.26% of individuals with 6+ comorbidities versus 1.39% with none (RR 8.79, 95% CI [7.16,10.79], p < 0.001) were also strongly associated with bariatric surgery. The main limitation is the reliance on overweight/obesity being recorded within primary care records to identify the study population.ConclusionsBetween 2007 and 2020, a very small percentage of the primary care population eligible for WM referral or bariatric surgery according to national guidance received either. Higher BMI and GP practice region had the strongest associations with both. Regional inequalities may reflect differences in commissioning and provision of WM services across the country. Multi-stakeholder qualitative research is ongoing to understand the barriers to accessing WM services and potential solutions. Together with population-wide prevention strategies, improved access to WM interventions is needed to reduce obesity levels.

Dataset Information

Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study.

Publications

Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study.

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