Top Tweets for #dataSharingChat
Excited to be at the opening of the @thenasem #ClinicalTrialData sharing workshop! #dataSharingChat.
#DataSharingChat To optimise the health impact of #DataSharing IDDO engages with researchers, clinicians & policy-makers from the start – this input drives development of data sharing platforms based on a research agenda that prioritises key scientific questions
#DataSharingChat To ensure the sustainability and legacy of #DataSharing IDDO is using #CDISC standards across #malaria and #NTDs so all data is harmonised to the same standards and can be used to its full potential for secondary analyses
@coffeemommy It was about sharing just of data collected as part of a clinical trial. Important topic - there is a National academy of science workshop on the challenges and opportunities later this month. #DataSharingChat
Obviously missed the #DataSharingChat but WOW all of this!
cc: #clinicaltrials #MyHealthMyData #bcsm #lcsm #gyncsm
@NASEM_Health One part of the value proposition is that clinical trial data sharing is part of our moral duty to the individuals who agree to participate in clinical trials - their contributions and sacrifices should yield dividends beyond just a single trial. #DataSharingChat
@JlbBurch @JeffDrazen @EeshanKhandekar @HealthPrivacy @NASEM_Health @MichelleM_Mello In general, regarding all types of health data, I think we could do a much better job of asking people what they think about how their data are used and how to create value for them as individuals. And ask them in a meaningful way. Not just scroll and accept. #DataSharingChat
@HealthPrivacy @NASEM_Health Can this be merged with the broader societal and academic imperatives to share data #DataSharingChat
https://t.co/46AjzE8lxt
@karlachilders @EeshanKhandekar @HealthPrivacy @NASEM_Health @MichelleM_Mello In 13 day's time we look forward to a robust discussion of all facets of the data sharing issue. We want it to work-but for that to be the case, we need examples of success!
#DataSharingChat
Thank you for joining our #DataSharingChat! Sign up to continue the discussion at our 11/18-19 #ClinicalTrialData Sharing workshop: https://t.co/fUCkoLkGB7
@EeshanKhandekar @HealthPrivacy @NASEM_Health Yes! Love this piece by .@MichelleM_Mello and colleagues. Let's ask the participants what they actually think about #clinicaltrialdata sharing. #DataSharingChat
@NASEM_Health The key to ensuring the sustainability of #clinicaltrial #datasharing: identify and follow clear, PATIENT-focused principles and continue to collaborate, removing barriers and increasing incentives to unlock the full power of data for patients. #DataSharingChat
@NINDStrials should be commended for RFA to fund data harmonization and secondary analysis in neurology. https://t.co/yKN520JJHw @vivlicenter is interested in partnering as platform with deep technical expertise. DM us. #DataSharingChat
@VivliCenter @AAMC #datasharingchat This is a major problem. If we can get the promotions committees of medical schools, to give "promotion credit" for generating public use datasets, we will have gone a long way toward making sharing more prevalent.
Join our webinar next week, which focuses talks by the colleagues from MRCT and @aamc on providing credit for data generators--a key incentive that is needed! https://t.co/dFlSFKlQ3R #ClinicalTrial #datasharingchat #datasharingchat
@NASEM_Health We know that data made available via the @YODAProject enabled researchers to look at gender differences in weight gain in patients with #IBD. @WHO has used the data to inform treatment guidelines for multidrug-resistant tuberculosis. #DataSharingChat
@NASEM_Health We've seen lots of interesting questions answered through data sharing! We further our understanding of disease, expand the base of knowledge to generate new insights and more complete evidence to enable better healthcare decisions for patients. @NASEM_Health #DataSharingChat
@mattsydes @NASEM_Health @YODAProject @VivliCenter .@mattsydes A big learning we've had is to build in transparency deliverables along the way (document prep, de-identification of datasets, etc) while teams are together and already working with the materials. Part culture, part resources. #DataSharingChat
@HealthPrivacy @NASEM_Health Long-term cancer survivor and patient advocate Jane Perlmutter tells us why data sharing is so important for people with rare diseases. https://t.co/uFk6XFdOSj #datasharingchat
@NASEM_Health One part of the value proposition is that clinical trial data sharing is part of our moral duty to the individuals who agree to participate in clinical trials - their contributions and sacrifices should yield dividends beyond just a single trial. #DataSharingChat
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