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#130051

Simon –
I agree, a metadata ‘catalog’ of available assets (datasets, offered data services etc.) is a practical and achievable objective
Best
Keith
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Prof Keith G Jeffery
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– Show quoted text -From: ***@***.***-groups.org
Sent: 02 April 2020 13:43
To: RDA-COVID19
Subject: Re: [rda-covid19] health data and irb’s
Hello everyone,
I would personally disagree with the group starting an actual repository for data, though agree that perhaps a metadata repository would be useful for the research community. Ideally though this metadata should be produced to an agreed standard so that it easier for the research community to find.
Simply I believe that setting up an effective and safe repository for health data would be difficult and presents a great number of challenges. In particular I would disagree with the notion of expecting data depositors to anonymise data as, having worked in a data archive, I have seen that very often data owners do not necessarily know how to do this well. If we wanted to make this a requirement for data to be made available we would need to provide guidance as to a minimum standard of anonymisation, tools and tests that should be done to justify that anonymisation, and probably have well-trained staff to check the data before it is goes public. Allowing the self-deposit of ‘anonymous’ data would be to gamble public confidence in the research community on the capabilities of the least-able data owner that makes their data available. Once one dataset in the repository was shown to be nowhere near anonymous enough, the public reaction would probably lead to the end of the project.
I don’t really foresee how we could put together a GDPR-compliant data resource for sensitive data (remembering that health data is a special category and so would require additional controls) without investment and considerably more time. If we consider a widely-used security model such as the ‘5 Safes’, I think it would be very difficult for us to develop a process in the time we have.
As we have limited time it may be better for the group to focus on helping data owners produce safe data, guidance for researchers on how to use the data, and bringing metadata together to help researchers locate data that they could potentially request to use.
Kind regards,
Simon

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