Browsing by Subject "Information Dissemination"
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Item Open Access A new open-access platform for measuring and sharing mTBI data.(Scientific reports, 2021-04) Domel, August G; Raymond, Samuel J; Giordano, Chiara; Liu, Yuzhe; Yousefsani, Seyed Abdolmajid; Fanton, Michael; Cecchi, Nicholas J; Vovk, Olga; Pirozzi, Ileana; Kight, Ali; Avery, Brett; Boumis, Athanasia; Fetters, Tyler; Jandu, Simran; Mehring, William M; Monga, Sam; Mouchawar, Nicole; Rangel, India; Rice, Eli; Roy, Pritha; Sami, Sohrab; Singh, Heer; Wu, Lyndia; Kuo, Calvin; Zeineh, Michael; Grant, Gerald; Camarillo, David BDespite numerous research efforts, the precise mechanisms of concussion have yet to be fully uncovered. Clinical studies on high-risk populations, such as contact sports athletes, have become more common and give insight on the link between impact severity and brain injury risk through the use of wearable sensors and neurological testing. However, as the number of institutions operating these studies grows, there is a growing need for a platform to share these data to facilitate our understanding of concussion mechanisms and aid in the development of suitable diagnostic tools. To that end, this paper puts forth two contributions: (1) a centralized, open-access platform for storing and sharing head impact data, in collaboration with the Federal Interagency Traumatic Brain Injury Research informatics system (FITBIR), and (2) a deep learning impact detection algorithm (MiGNet) to differentiate between true head impacts and false positives for the previously biomechanically validated instrumented mouthguard sensor (MiG2.0), all of which easily interfaces with FITBIR. We report 96% accuracy using MiGNet, based on a neural network model, improving on previous work based on Support Vector Machines achieving 91% accuracy, on an out of sample dataset of high school and collegiate football head impacts. The integrated MiG2.0 and FITBIR system serve as a collaborative research tool to be disseminated across multiple institutions towards creating a standardized dataset for furthering the knowledge of concussion biomechanics.Item Open Access Access to patient-level data from GlaxoSmithKline clinical trials.(N Engl J Med, 2013-08-01) Nisen, Perry; Rockhold, FrankItem Open Access Acquisition, Analysis, and Sharing of Data in 2015 and Beyond: A Survey of the Landscape: A Conference Report From the American Heart Association Data Summit 2015.(J Am Heart Assoc, 2015-11-05) Antman, Elliott M; Benjamin, Emelia J; Harrington, Robert A; Houser, Steven R; Peterson, Eric D; Bauman, Mary Ann; Brown, Nancy; Bufalino, Vincent; Califf, Robert M; Creager, Mark A; Daugherty, Alan; Demets, David L; Dennis, Bernard P; Ebadollahi, Shahram; Jessup, Mariell; Lauer, Michael S; Lo, Bernard; MacRae, Calum A; McConnell, Michael V; McCray, Alexa T; Mello, Michelle M; Mueller, Eric; Newburger, Jane W; Okun, Sally; Packer, Milton; Philippakis, Anthony; Ping, Peipei; Prasoon, Prad; Roger, Véronique L; Singer, Steve; Temple, Robert; Turner, Melanie B; Vigilante, Kevin; Warner, John; Wayte, Patrick; American Heart Association Data Sharing Summit AttendeesBACKGROUND: A 1.5-day interactive forum was convened to discuss critical issues in the acquisition, analysis, and sharing of data in the field of cardiovascular and stroke science. The discussion will serve as the foundation for the American Heart Association's (AHA's) near-term and future strategies in the Big Data area. The concepts evolving from this forum may also inform other fields of medicine and science. METHODS AND RESULTS: A total of 47 participants representing stakeholders from 7 domains (patients, basic scientists, clinical investigators, population researchers, clinicians and healthcare system administrators, industry, and regulatory authorities) participated in the conference. Presentation topics included updates on data as viewed from conventional medical and nonmedical sources, building and using Big Data repositories, articulation of the goals of data sharing, and principles of responsible data sharing. Facilitated breakout sessions were conducted to examine what each of the 7 stakeholder domains wants from Big Data under ideal circumstances and the possible roles that the AHA might play in meeting their needs. Important areas that are high priorities for further study regarding Big Data include a description of the methodology of how to acquire and analyze findings, validation of the veracity of discoveries from such research, and integration into investigative and clinical care aspects of future cardiovascular and stroke medicine. Potential roles that the AHA might consider include facilitating a standards discussion (eg, tools, methodology, and appropriate data use), providing education (eg, healthcare providers, patients, investigators), and helping build an interoperable digital ecosystem in cardiovascular and stroke science. CONCLUSION: There was a consensus across stakeholder domains that Big Data holds great promise for revolutionizing the way cardiovascular and stroke research is conducted and clinical care is delivered; however, there is a clear need for the creation of a vision of how to use it to achieve the desired goals. Potential roles for the AHA center around facilitating a discussion of standards, providing education, and helping establish a cardiovascular digital ecosystem. This ecosystem should be interoperable and needs to interface with the rapidly growing digital object environment of the modern-day healthcare system.Item Restricted Application description and policy model in collaborative environment for sharing of information on epidemiological and clinical research data sets.(PLoS One, 2010-02-19) de Carvalho, EC; Batilana, AP; Simkins, J; Martins, H; Shah, J; Rajgor, D; Shah, A; Rockart, S; Pietrobon, RBACKGROUND: Sharing of epidemiological and clinical data sets among researchers is poor at best, in detriment of science and community at large. The purpose of this paper is therefore to (1) describe a novel Web application designed to share information on study data sets focusing on epidemiological clinical research in a collaborative environment and (2) create a policy model placing this collaborative environment into the current scientific social context. METHODOLOGY: The Database of Databases application was developed based on feedback from epidemiologists and clinical researchers requiring a Web-based platform that would allow for sharing of information about epidemiological and clinical study data sets in a collaborative environment. This platform should ensure that researchers can modify the information. A Model-based predictions of number of publications and funding resulting from combinations of different policy implementation strategies (for metadata and data sharing) were generated using System Dynamics modeling. PRINCIPAL FINDINGS: The application allows researchers to easily upload information about clinical study data sets, which is searchable and modifiable by other users in a wiki environment. All modifications are filtered by the database principal investigator in order to maintain quality control. The application has been extensively tested and currently contains 130 clinical study data sets from the United States, Australia, China and Singapore. Model results indicated that any policy implementation would be better than the current strategy, that metadata sharing is better than data-sharing, and that combined policies achieve the best results in terms of publications. CONCLUSIONS: Based on our empirical observations and resulting model, the social network environment surrounding the application can assist epidemiologists and clinical researchers contribute and search for metadata in a collaborative environment, thus potentially facilitating collaboration efforts among research communities distributed around the globe.Item Open Access Bumps and bridges on the road to responsible sharing of clinical trial data.(Clin Trials, 2014-02) Berlin, Jesse A; Morris, Sandra; Rockhold, Frank; Askie, Lisa; Ghersi, Davina; Waldstreicher, JoanneBACKGROUND: Sharing data from clinical trials could assist with the advancement of science and medicine, potentially providing a better understanding of both the benefits and risks of medicines and other treatments. Sharing data also allows for questions to be addressed at the meta-analysis level that cannot be addressed within individual studies. PURPOSE: In this article, we offer some practical recommendations that will allow researchers to readily combine datasets from different studies and sources, thereby enabling meta-analyses that could have significant impact on advancing medicine. METHODS: The authors relied on their collective experience in the conduct and reporting of clinical trials to define the areas of potential concern related to responsible sharing of clinical trial data. We conducted a review of the literature and engaged in an iterative consensus-building process. RESULTS: To further the goal of responsible sharing of clinical trial data, collaboration on a consistent set of data standards and methods across both industry and academia is sorely needed. Protection of participant privacy is a paramount principle. The additional questions of who maintains, funds, and oversees databases of participant-level data will be important to resolve. Requiring researchers to register their requests for participant-level data and to provide details of their intended research would allow others to evaluate the proposed research plan, consistent with the principles of science and transparency. LIMITATIONS: The recommendations represent the views of the individual authors. We recognize that other approaches to data sharing that have been advocated are also based on sound ethical and scientific principles.Item Open Access Can You Trust What You Watch? An Assessment of the Quality of Information in Aesthetic Surgery Videos on YouTube.(Plastic and reconstructive surgery, 2020-02) Gray, Megan C; Gemmiti, Amanda; Ata, Ashar; Jun, Brandon; Johnson, Philip K; Ricci, Joseph A; Patel, AshitBackground
Videos on YouTube can be posted without regulation or content oversight. Unfortunately, many patients use YouTube as a resource on aesthetic surgery, leading to misinformation. Currently, there are no objective assessments of the quality of information on YouTube about aesthetic surgery.Methods
YouTube was queried for videos about the 12 most common aesthetic surgical procedures, identified from the 2015 American Society of Plastic Surgeons procedural statistics between May and June of 2016. The top 25 results for each search term were scored using the modified Ensuring Quality Information for Patients criteria based on video structure, content, and author identification. Average Ensuring Quality Information for Patients score, view count, and video duration were compared between authorship groups.Results
A total of 523 videos were graded after excluding duplicates. The mean modified Ensuring Quality Information for Patients score for all videos was 13.1 (SE, 0.18) of a possible 27. The videos under the search "nose reshaping" had the lowest mean score of 10.24 (SE, 0.74), whereas "breast augmentation" had the highest score of 15.96 (SE, 0.65). Physician authorship accounted for 59 percent of included videos and had a higher mean Ensuring Quality Information for Patients score than those by patients. Only three of the 21 search terms had a mean modified Ensuring Quality Information for Patients score meeting criteria for high-quality videos.Conclusions
The information contained in aesthetic surgery videos on YouTube is low quality. Patients should be aware that the information has the potential to be inaccurate. Plastic surgeons should be encouraged to develop high-quality videos to educate patients.Item Open Access Countering misinformation via WhatsApp: Preliminary evidence from the COVID-19 pandemic in Zimbabwe.(PloS one, 2020-01) Bowles, Jeremy; Larreguy, Horacio; Liu, ShelleyWe examine how information from trusted social media sources can shape knowledge and behavior when misinformation and mistrust are widespread. In the context of the COVID-19 pandemic in Zimbabwe, we partnered with a trusted civil society organization to randomize the timing of the dissemination of messages aimed at targeting misinformation about the virus to 27,000 newsletter WhatsApp subscribers. We examine how exposure to these messages affects individuals' beliefs about how to deal with the virus and preventative behavior. In a survey of 864 survey respondents, we find a 0.26σ increase in knowledge about COVID-19 as measured by responses to factual questions. Through a list experiment embedded in the survey, we further find that potentially harmful behavior-not abiding by lockdown guidelines-decreased by 30 percentage points. The results show that social media messaging from trusted sources may have substantively large effects not only on individuals' knowledge but also ultimately on related behavior.Item Open Access Data Sharing at a Crossroads.(N Engl J Med, 2016-09-22) Rockhold, Frank; Nisen, Perry; Freeman, AndrewItem Open Access HIPAA and the Leak of "Deidentified" EHR Data.(The New England journal of medicine, 2021-06-05) Mandl, Kenneth D; Perakslis, Eric DItem Open Access NSF workshop report: discovering general principles of nervous system organization by comparing brain maps across species.(J Comp Neurol, 2014-05-01) Striedter, Georg F; Belgard, T Grant; Chen, Chun-Chun; Davis, Fred P; Finlay, Barbara L; Güntürkün, Onur; Hale, Melina E; Harris, Julie A; Hecht, Erin E; Hof, Patrick R; Hofmann, Hans A; Holland, Linda Z; Iwaniuk, Andrew N; Jarvis, Erich D; Karten, Harvey J; Katz, Paul S; Kristan, William B; Macagno, Eduardo R; Mitra, Partha P; Moroz, Leonid L; Preuss, Todd M; Ragsdale, Clifton W; Sherwood, Chet C; Stevens, Charles F; Stüttgen, Maik C; Tsumoto, Tadaharu; Wilczynski, WalterEfforts to understand nervous system structure and function have received new impetus from the federal Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. Comparative analyses can contribute to this effort by leading to the discovery of general principles of neural circuit design, information processing, and gene-structure-function relationships that are not apparent from studies on single species. We here propose to extend the comparative approach to nervous system 'maps' comprising molecular, anatomical, and physiological data. This research will identify which neural features are likely to generalize across species, and which are unlikely to be broadly conserved. It will also suggest causal relationships between genes, development, adult anatomy, physiology, and, ultimately, behavior. These causal hypotheses can then be tested experimentally. Finally, insights from comparative research can inspire and guide technological development. To promote this research agenda, we recommend that teams of investigators coalesce around specific research questions and select a set of 'reference species' to anchor their comparative analyses. These reference species should be chosen not just for practical advantages, but also with regard for their phylogenetic position, behavioral repertoire, well-annotated genome, or other strategic reasons. We envision that the nervous systems of these reference species will be mapped in more detail than those of other species. The collected data may range from the molecular to the behavioral, depending on the research question. To integrate across levels of analysis and across species, standards for data collection, annotation, archiving, and distribution must be developed and respected. To that end, it will help to form networks or consortia of researchers and centers for science, technology, and education that focus on organized data collection, distribution, and training. These activities could be supported, at least in part, through existing mechanisms at NSF, NIH, and other agencies. It will also be important to develop new integrated software and database systems for cross-species data analyses. Multidisciplinary efforts to develop such analytical tools should be supported financially. Finally, training opportunities should be created to stimulate multidisciplinary, integrative research into brain structure, function, and evolution.Item Open Access The autism brain imaging data exchange: towards a large-scale evaluation of the intrinsic brain architecture in autism.(Molecular psychiatry, 2014-06) Di Martino, A; Yan, C-G; Li, Q; Denio, E; Castellanos, FX; Alaerts, K; Anderson, JS; Assaf, M; Bookheimer, SY; Dapretto, M; Deen, B; Delmonte, S; Dinstein, I; Ertl-Wagner, B; Fair, DA; Gallagher, L; Kennedy, DP; Keown, CL; Keysers, C; Lainhart, JE; Lord, C; Luna, B; Menon, V; Minshew, NJ; Monk, CS; Mueller, S; Müller, R-A; Nebel, MB; Nigg, JT; O'Hearn, K; Pelphrey, KA; Peltier, SJ; Rudie, JD; Sunaert, S; Thioux, M; Tyszka, JM; Uddin, LQ; Verhoeven, JS; Wenderoth, N; Wiggins, JL; Mostofsky, SH; Milham, MPAutism spectrum disorders (ASDs) represent a formidable challenge for psychiatry and neuroscience because of their high prevalence, lifelong nature, complexity and substantial heterogeneity. Facing these obstacles requires large-scale multidisciplinary efforts. Although the field of genetics has pioneered data sharing for these reasons, neuroimaging had not kept pace. In response, we introduce the Autism Brain Imaging Data Exchange (ABIDE)-a grassroots consortium aggregating and openly sharing 1112 existing resting-state functional magnetic resonance imaging (R-fMRI) data sets with corresponding structural MRI and phenotypic information from 539 individuals with ASDs and 573 age-matched typical controls (TCs; 7-64 years) (http://fcon_1000.projects.nitrc.org/indi/abide/). Here, we present this resource and demonstrate its suitability for advancing knowledge of ASD neurobiology based on analyses of 360 male subjects with ASDs and 403 male age-matched TCs. We focused on whole-brain intrinsic functional connectivity and also survey a range of voxel-wise measures of intrinsic functional brain architecture. Whole-brain analyses reconciled seemingly disparate themes of both hypo- and hyperconnectivity in the ASD literature; both were detected, although hypoconnectivity dominated, particularly for corticocortical and interhemispheric functional connectivity. Exploratory analyses using an array of regional metrics of intrinsic brain function converged on common loci of dysfunction in ASDs (mid- and posterior insula and posterior cingulate cortex), and highlighted less commonly explored regions such as the thalamus. The survey of the ABIDE R-fMRI data sets provides unprecedented demonstrations of both replication and novel discovery. By pooling multiple international data sets, ABIDE is expected to accelerate the pace of discovery setting the stage for the next generation of ASD studies.Item Open Access The national drug abuse treatment clinical trials network data share project: website design, usage, challenges, and future directions.(Clinical trials (London, England), 2013-01) Shmueli-Blumberg, Dikla; Hu, Lian; Allen, Colleen; Frasketi, Michael; Wu, Li-Tzy; Vanveldhuisen, PaulThere are many benefits of data sharing, including the promotion of new research from effective use of existing data, replication of findings through re-analysis of pooled data files, meta-analysis using individual patient data, and reinforcement of open scientific inquiry. A randomized controlled trial is considered as the 'gold standard' for establishing treatment effectiveness, but clinical trial research is very costly, and sharing data is an opportunity to expand the investment of the clinical trial beyond its original goals at minimal costs.We describe the goals, developments, and usage of the Data Share website (http://www.ctndatashare.org) for the National Drug Abuse Treatment Clinical Trials Network (CTN) in the United States, including lessons learned, limitations, and major revisions, and considerations for future directions to improve data sharing.Data management and programming procedures were conducted to produce uniform and Health Insurance Portability and Accountability Act (HIPAA)-compliant de-identified research data files from the completed trials of the CTN for archiving, managing, and sharing on the Data Share website.Since its inception in 2006 and through October 2012, nearly 1700 downloads from 27 clinical trials have been accessed from the Data Share website, with the use increasing over the years. Individuals from 31 countries have downloaded data from the website, and there have been at least 13 publications derived from analyzing data through the public Data Share website.Minimal control over data requests and usage has resulted in little information and lack of control regarding how the data from the website are used. Lack of uniformity in data elements collected across CTN trials has limited cross-study analyses.The Data Share website offers researchers easy access to de-identified data files with the goal to promote additional research and identify new findings from completed CTN studies. To maximize the utility of the website, ongoing collaborative efforts are needed to standardize the core measures used for data collection in the CTN studies with the goal to increase their comparability and to facilitate the ability to pool data files for cross-study analyses.Item Open Access Websites or Videos: Which Offer Better Information for Patients? A Comparative Analysis of the Quality of YouTube Videos and Websites for Cosmetic Injectables.(Plastic and reconstructive surgery, 2022-03) Patel, Anooj A; Mulvihill, Lianne; Jin, Alison; Patel, Ashit; Galiano, Robert DBackground
YouTube is used by more than 70 percent of adults and 81 percent of 15- to 25-year-olds. The information quality of videos related to the two most performed aesthetic procedures-botulinum toxin type A (Botox) and soft-tissue filler injections-has not been assessed or compared to that of websites.Methods
A YouTube search for "Botox" and "fillers" was performed in July of 2020, identifying the most popular health information videos. Quality was assessed using the validated Journal of American Medical Association, Health on the Net principles, and the DISCERN criteria in addition to a procedure-specific content score. Quality scores were compared between different groups of video contributors and against websites.Results
A total of 720 measurements of quality were performed across 95 YouTube videos and 85 websites. The mean quality scores were as follows: Journal of the American Medical Association, 1.74/4 ± 0.718; Health on the Net, 6.66/16 ± 2.07; DISCERN, 40.0/80 ± 9.25; and content, 39.1/100 ± 11.9. Physician, nonphysician health professionals, and other (news, magazine channels, and influencers) were all of higher quality than patient-based videos (p < 0.001). The mean DISCERN percentage score for videos was 50.04 ± 11.57 and significantly less than that of websites, 55.46 ± 15.74 (p = 0.010). The mean content scores showed a similar result, 39.06 ± 11.92 versus 60.76 ± 17.65 (p < 0.001), respectively.Conclusions
Improvement is needed in the quality of YouTube videos related to aesthetic injectables. Plastic surgeons, who are the most frequent video contributors, are most qualified to provide this change. Plastic surgeons should include videos as part of their online presence, as they may help facilitate a greater viewership.