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#130034

Hi All,
Indeed, there are existing biomedical repositories that already include COVID19 datasets. Take a look at http://datamed.org , which indexes 2.3+ mln biomedical datasets. They already add “Covid-19” tags to relevant datasets (eg https://datamed.org/search.php?query=covid&searchtype=data) . Perhaps RDA can work with DataMed on this. I cc to Lucila Ohno-Machado from UCSD and Hua Xu from UT-Health who can give you more info.
Best regards,
– Ilya
__________________________________
Ilya Zaslavsky, Ph.D.
Director, Spatial Information Systems Lab
San Diego Supercomputer Center
University of California San Diego
9500 Gilman Drive, MC-0505
La Jolla, CA 92093-0505
858.534.8342 (ph)
***@***.***
– Show quoted text -From: ***@***.***-groups.org
Sent: Thursday, April 2, 2020 11:21 PM
To: ***@***.***; RDA-COVID19
Subject: Re: [rda-covid19] health data and irb’s
Hi all,
Adding my voice and thoughts to the mix here.
I agree with the overall sentiment here that this should not be about setting up a repository. I’m also not convinced that the role of RDA and this WG is to establish a metadata repository… though I think this would be hugely valuable, I’m not sure RDA is set up in a way that can create, and maintain such a capability. I think it maybe better to look for existing metadata repository providers and looking to them to expand/re-purpose their capability to provide such a service.
In regards to the purpose of this group and how we can add value here, I’d like to draw attention to what is different in the current situation to what RDA does normally. (and forgive me if I’m stating something that is obvious or have already been recoginsed).
* Normal work we do in RDA is around trying to codify the complicate data landscape so that we have convergence of thoughts, ideas, and practices leading to best-practices etc.
* Right now, we are in chaos! The world has been thrown into chaos and what this group is doing is to help everyone make sense of what is going on, and provide some framework for this to occur in, at the fastest possible pace.
I think the Cynefin framework provides some good guidance on how to approach the current situation, and our task at hand. Normally RDA work is primarily around taking what is in the Complicated domain, and making it Simple. Currently we are very much squarely in the Chaotic state when it comes to how to respond to COVID-19. Right now, our role here is to help the world move from the Chaotic domain to the Complex domain as quickly as possible.
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Why I think this is important here is because it can change HOW we go about doing the work here. While we typically deliberate long and hard at RDA on picking the Best practice/framework from all that is available, what is required now is to pick/develop some framework quickly, and put it out there for guidance and use. We should then look at how that has helped, and continually iterate over this looking at emergent uses.
Also, as RDA members, we have an extensive network for disseminating information. Looking at the discussions and comments that are flowing through in the group mail, there are many valuable ideas, initiatives going on. One thing we could do is find a ways of looking at is going on across the world that are worthy of adoption/adaption by others, and disseminating that through our networks for others to build upon.
Another area that I would like to draw attention to is the work by Dave Jones at ESIP on Operational Readiness Levels for data(Slide deck, webinar recording). This provides a framework for rapidly evaluating the ‘usable’ value of data in a fast changing environment. Establishing something akin to this would allow classification of the growing volume of data, into there fitness for use/reuse.
[image.png]
Kind regards
Kheeran
On Fri, Apr 3, 2020 at 10:03 AM kristan.kang via RDA-COVID19 wrote:
I strongly agree with the sentiment of Simon’s comment, and Sarah’s reminder that the aim of the WG is to establish guidelines, not infrastructure.
To those in the WG frustrated by the delays that buracracy cause in sharing and accessing data – I understand this as I dealt with it for over a decade, so I support making the buracratic process as efficient as possible. However this should not be at the stake of the moral and legal principles that underpin the IRB/ethics-review process and researchers should not take it onto themselves to temporarily suspend the legal and ethical requirement to respect individuals’ right to privacy as they see fit. This would not only be damaging for health research everywhere, but would also put those researchers on dangerous footing with their employers and the law.

Full post: https://www.rd-alliance.org/group/rda-covid19/post/health-data-and-irbs
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