Discover and read the best of Twitter Threads about #datasharing

Most recents (18)

Machine Learning Tools for Image-Based Glioma Grading and the Quality of Their Reporting: Challenges and Opportunities mdpi.com/1648502 #mdpicancers via @Cancers_MDPI @YaleRadiology
@MerkajSara @Ryan_Bahar are an outstanding team that wrote this exciting review on application of #ML to the study of #glioma imaging. After reviewing over 12,000 articles and extracting information from over 80 articles they published their systematic review in @FrontOncology.
But, there was so much more that needed to be discussed, so @MerkajSara & @Ryan_Bahar wrote an expert review of literature with focus on future directions. @YaleMed #Neurosurgery This review is a must read when starting out in #ML & #glioma imaging #Radiomics overview
Read 8 tweets
I'm sure well-intentioned @CamCavendish but this piece completely mashes up #datasharing for #DirectCare of a patient and data sharing for #ResearchAndPlanning, and other 'secondary uses'. These are VERY different in legal basis, IT systems, and privacy.

ft.com/content/dc01b3…
It's complex and it doesn't make for punchy articles, but it's very important that we are totally clear about the distinction between Direct Care and Planning/Research.

At present, data sharing for Direct Care STILL lags significantly behind data sharing for secondary uses
Because they are built on totally different technologies, progress towards Research and Planning uses of #GPData doesn't advance the cause for Direct Care one iota.

Which is why it's so important the distinction is made and understood. Conflating the issues is counterproductive.
Read 18 tweets
A little thread on biodiversity #datasharing #openaccess #openscience. On sharing data on #rainforest birds and habitat that @gundupoo and I collected during 1997-99 in the Kalakad-Mundathurai Tiger Reserve #WesternGhats... a retrospective from a quarter century later 1/n In KMTR, March 1999; Photo by P JeganathanIn KMTR, Dec 2018; Photo by Kalyan Varma
Field biologists need not just collect or hoard biodiversity data for their own use. Sharing under a CC-BY or public domain (CC0) license enables better and wider use and adds value to science and scholarship, students and citizens. 2/n Illustration @dasaptaerwin @WikiCommons
For a start, our doctoral research data from KMTR, used in a couple of papers, is now @datadryad (CC0/Public Domain license). Bird and vegetation/habitat data from 21 transects in rainforests along an elevation gradient and from abandoned plantations. 3/n
datadryad.org/stash/dataset/…
Read 14 tweets
🔴 LIVE: @rachelsibande joins @CLEARAA1's Talitha Hlaka, @The_DSD's Dez Jason, and @giz_gmbh #FAIRForward's Mark Irura as they discuss #ResponsibleDataUse for #DataGovernance and #MEL in times of unprecedented volumes of #DigitalData and new #DataLaws 👉 crs-org.zoom.us/j/81523617808
Dez Jason kicks things off by sharing @MERLTech's #ResponsibleData in #MonitoringAndEvaluation (#RDiME) #ME and #data life cycles, at every stage of which responsible #DataGovernance is considered key: im-portal.org/help-library/r…
Mark Irura notes the importance of using #data to improve governance but he emphasizes that communities need to know how their data is being used so they can protect their #privacy.

However, choosing not to share your data should NOT prevent you from participating in government!
Read 20 tweets
Daily Bookmarks to GAVNet 11/27/2021 greeneracresvaluenetwork.wordpress.com/2021/11/27/dai…
A stream in Waipio smelled like beer. An investigation into a strange spill ensued.

hawaiinewsnow.com/2021/11/11/str…

#runoff #contamination #alcohol #brewery #hawaii
Read 13 tweets
Daily Bookmarks to GAVNet 11/12/2021 greeneracresvaluenetwork.wordpress.com/2021/11/12/dai…
The Real Tantrum Should Be Over The Disturbing Lack of Celebration (higher yields)

alhambrapartners.com/2021/11/02/the…

#yield #BondMarket #CentralBank #normalization #InterestRates
Identification of LZTFL1 as a candidate effector gene at a COVID-19 risk locus

nature.com/articles/s4158…

#SARSCoV2 #genetics #risk #RespiratoryFailure #GainOfFunction #variants #TherapeuticTargets
Read 8 tweets
#radioactive commentary, w/ apologies to all admirable people of #BrainSTOA working hard on #DataSharing. This highlights a need to broaden #sharing to #computations & #insights. Premises were clear in Ngai’s “data resource development”, Bjaalie’s “modeling workflow” #Teamscience
Data sharing is good. Too much data creation, objectionable. Overreliance of data might be used to obfuscate gaps in theory, analysis and interpretation. Data is also a currency for misused scientific power. #InclusiveScience
At this point, we should also focus on sharing #ComputationalTools (and explaining them, and building expertise in using them). #ComputationalNeuroscience.

We should enhance collective vetting of our interpretations of their meaning.
Read 8 tweets
We set up a fund to support projects that enable trustworthy and ethical #datasharing. These projects aim to help citizens and businesses lower their impact on the environment, improve public services and save lives.

Meet the projects: hubs.ly/H0K9tmW0
1/8 @OpenClimateFix has been exploring how opening up #energy #data can help reduce energy costs and achieve net zero emissions.

The team identified that recurring revenue is very important for economic sustainability, and created guidance around this: theodi.org/article/open-c…
2/8 @eticlabuk looked at how #datasharing could unlock the value of data in the #charity sector.

The team researched whether the #datafederation model could be a viable approach: theodi.org/article/etic-l…
Read 9 tweets
1/9 Covid-19 has shown us the benefits of #datasharing, but lack of trust in how #data is shared, and difficulty in designing and sustaining #dataaccess initiatives, can be a barrier to sharing.

We’ve been exploring these challenges in our @InnovateUK funded R&D programme...
2/9 Lack of trust and trustworthiness could lead to less #datasharing. But how do we decide what organisations and #datasets are trustworthy?

We've been exploring systematic ways of examining trust and trustworthiness: theodi.org/project/buildi…
3/9 ...and here’s a (beta) guidebook to help you be more trustworthy and trusted when collecting, managing, using and sharing #data. Please try it and let us know what you think: theodi.org/article/introd…
Read 9 tweets
I’m super excited about our new paper in @EUplatinum, “Nascent Prostate Cancer Heterogeneity Drives Evolution and Resistance to Intense Hormonal Therapy” in @sowalsky lab @NIH @NCIResearchCtr @PCFScience
Patients diagnosed w/ aggressive, non-metastatic prostate cancer are at higher risk of recurrence after radical prostatectomy (RP). Post-op, some tumors progress to castration-resistant prostate cancer. Are there tumors that will respond to pre-surgical (neoadjuvant) therapies?
A trial recently completed at @NCIResearchCtr clinical trial enrolled patients with high risk, localized prostate cancer, who had 6 months of intense neoadjuvant ADT followed by RP (clincancerres.aacrjournals.org/content/27/2/4…). We found that 40% of patients responded to treatment.
Read 16 tweets
DHSC's privacy notice for COVID testing has been updated to make it clear your result could be shared with police. gov.uk/government/pub… #covid19uk

Also PHE's #contacttracing privacy notice. contact-tracing.phe.gov.uk/help/privacy-n…

Recent regs. legislation.gov.uk/uksi/2020/1045…
HSJ says DHSC has agreed an MOU with police but I think that just tightens procedural compliance. hsj.co.uk/7028653.article #covid19uk #dataprotection

Sch 21 of the Coronavirus Act anticipated some sharing of results, even before new regs on self-isolation. legislation.gov.uk/ukpga/2020/7/s…
Apparently NHS Digital is the "national data guardian" now. Has anybody told the actual National Data Guardian? hsj.co.uk/7028653.article #covid19uk #NHSdata #datasharing
Read 4 tweets
1/n The #IPFCellAtlas is finally out! We profiled 312,928 cells from 32 IPF, 28 controls, 18 COPD lungs using @10xGenomics #scRNAseq & identified previously unidentified populations of epithelial & endothelial cells enriched in IPF #CureIPF advances.sciencemag.org/content/6/28/e…
2/n Among epithelial cells, we identified cells DISTINCT from ANY epithelial cells previously described in human lungs. These aberrant basaloid cells are at the edge of myofibroblast foci & express fibrotic molecules & regulators #IPFCellAtlas #CureIPF advances.sciencemag.org/content/6/28/e…
3/n Among enodthelial cells we discovered a previously undescribed population of COL15A1+ CD31+ cells. They are usually restricted to the airway but in IPF are found in the lung parenchyma - what are they doing there? #IPFCellAtlas #scRNAseq #CureIPF advances.sciencemag.org/content/6/28/e…
Read 9 tweets
The retractions of papers in @TheLancet and the @NEJM have been met with outrage, anger and calls for resignation of the editors. Let's take a moment to think about this. What is a journal's and an editor's responsibility? To ensure that they publish the best science. Thread
They also need to publish the best science reliably and in a timely manner. How do they do this? They send to peer reviewers, get comments, and make a decision. They also rely heavily on authors for the veracity and integrity of the paper and their potential or real COI
Authors sign a declaration that they vouch for the data they present. Given the present circumstances in science, is it realistic to expect that editors and reviewers get the raw data of every single study that's submitted to their journal to guide their decision?
Read 6 tweets
Today I am @theNASEM @theNAMedicine meeting on #datasharing. Much progress, but much to do. Long ride for our team since we started @YODAProject in 2011. @jsross119 will present our updated progress. Use is growing. Culture changing. Still not enough credit for those who share.
@theNASEM @theNAMedicine @YODAProject @jsross119 To me question is whether we can acknowledge as heroes those who enable research of others by creating powerful data resources that safeguard participant privacy and data security, but enable acceleration of progress and reduction in research waste. #datasharing @theNAMedicine
@theNASEM @theNAMedicine @YODAProject @jsross119 Academia persists in resisting full credit of contributions of those who make great research possible. We are in an era of team science - & teams stretch back to provenance of the data. But we have not progressed in determining how to acknowledge and credit these contributions.
Read 4 tweets
We’ve just started our workshop on Contracts for Data Collaboration (#C4DC)! We open with a note about the need to identify the enabling conditions essential to #datacollaboration and build a community around it.
.@sverhulst explains The GovLab’s interest in this topic, which stemmed from its #DataStewards Camps. In those events, data stewards repeatedly noted that contracts were one of their biggest barriers to data collaboration.
He continues by noting this meeting is not about sharing what we think is the best solution but to optimize what we have for the demand that is out there from a diverse group of stakeholders.

Figuring out how to maximize value is essential for doing good.
Read 24 tweets
“Care doesn't have to be restricted in this way. In Scotland and in Wales, a different approach is being taken”
blogs.bmj.com/bmj/2019/05/13…
Today in @bmj_latest, leading health academics share grave concerns about the harm being done to patients & the health system by NHS charging and #datasharing blogs.bmj.com/bmj/2019/05/13…
We support their call to @DHSCgovuk for transparency & the release of evidence being withheld on the impacts of NHS charging and data-sharing @odo_kate
@rob_aldridge @martinmckee @miriamorcutt & colleagues #StopSharing #PatientsNotPassports
Read 3 tweets
getting reading to introduce @NoraNiLoideain : "A Game Changer for Research? GDPR and Health Data" #DataProtection @SANBI_SA
last week we were discussiong @rdpeng 's simplystatistics.org/2018/05/15/ret… #datasharing @SANBI_SA so this talk is very timely!
Read 29 tweets
Tweetstorm coming up on the 9 distinguishing points of our thinking on #DataProtection ☔️ @dvararesearch @benichugh @julupani @binduananth 1/n
1. Scope —the law should apply to protect the personal data of all people in India, foreign entities conducting business in India + those outside India processing personal data from india. 2/n
2. Protect all personally identifiable data—do away with the distinction b/w “sensitive personal data” and “personal data”. Protect all personally identifiable data.This means the law will not apply to de-identified data; incentivising de-identification (as techniques evolve) 3/n
Read 13 tweets

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