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#130040

Hi Sarah, all,
(apologies for missing the group email off my first message)
Thanks to you and the co-chairs for initiating this activity and reiterating the objectives in your last email. Like other publishers I’m sure, PLOS is receiving COVID related submissions and fast tracking them through peer review and publication (https://collections.plos.org/covid-19). As the goal of this group is to produce guidelines, I am particularly interested in two key questions and am considering how PLOS could help in this regard:
1. Are any group members active researchers who would use the guidelines, and/or do we need to engage candidate researchers as part of our efforts to test them?
2. What are the high value (for reuse) data formats and data types we should be seeking to be prepared/shared according to the guidelines?
The practical guidance and recommendations may be more impactful when developed and applied in the context of worked exemplars/case studies/early-adopters. This approach may also help test/validate our solution (guidelines) against the problem (need for best practice to maximise efficiency).
If anyone has answers or suggestions for these two questions, feel free to email me directly.
Looking forward to contributing to this effort.
Iain
Iain Hrynaszkiewicz
Publisher, Open Research
***@***.***
Main: +44 (0) 1223-442810 I Direct: +44 (0) 1223-446976
Twitter
PLOS
Empowering researchers to transform science
Carlyle House, Carlyle Road, Cambridge CB4 3DN, United Kingdom
Twitter
California (U.S.) corporation #C2354500, based in San Francisco
– Show quoted text -From: ***@***.***-groups.org
Sent: 02 April 2020 13:57
To: RDA-COVID19 ; ***@***.***
Subject: Re: [rda-covid19] health data and irb’s
Hi Simon
The group will focus on generating guidelines so researchers in each field are aware of the appropriate standards and repositories. We don’t intend to establish a data repository.
There are some initiatives the EC or its projects are supporting. OpenAIRE for example is creating a dashboard to increase discovery of COVID19 research and EMBL/EBI are rapidly deploying a COVID19 research data platform that should be integrated with EOSC to facilitate data sharing.
All best
Sarah
________________________________
From: ***@***.***-groups.org on behalf of SimonParker via RDA-COVID19
Sent: 02 April 2020 13:42
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
Manage my subscriptions: https://www.rd-alliance.org/mailinglist
Stop emails for this post: https://www.rd-alliance.org/mailinglist/unsubscribe/68906
Hi Sarah, all,
(apologies for missing the group email off my first message)
Thanks to you and the co-chairs for initiating this activity and reiterating the objectives in your last email. Like other publishers I’m sure, PLOS is receiving COVID related submissions and fast tracking them through peer review and publication (https://collections.plos.org/covid-19). As the goal of this group is to produce guidelines, I am particularly interested in two key questions and am considering how PLOS could help in this regard:
1. Are any group members active researchers who would use the guidelines, and/or do we need to engage candidate researchers as part of our efforts to test them?
2. What are the high value (for reuse) data formats and data types we should be seeking to be prepared/shared according to the guidelines?
The practical guidance and recommendations may be more impactful when developed and applied in the context of worked exemplars/case studies/early-adopters. This approach may also help test/validate our solution (guidelines) against the problem (need for best practice to maximise efficiency).
If anyone has answers or suggestions for these two questions, feel free to email me directly.
Looking forward to contributing to this effort.
Iain
Iain Hrynaszkiewicz
Publisher, Open Research
***@***.***
Main: +44 (0) 1223-442810 I Direct: +44 (0) 1223-446976
Twitter
PLOS
Empowering researchers to transform science
Carlyle House, Carlyle Road, Cambridge CB4 3DN, United Kingdom
Twitter
California (U.S.) corporation #C2354500, based in San Francisco
From: ***@***.***-groups.org
Sent: 02 April 2020 13:57
To: RDA-COVID19 ; ***@***.***
Subject: Re: [rda-covid19] health data and irb’s
Hi Simon
The group will focus on generating guidelines so researchers in each field are aware of the appropriate standards and repositories. We don’t intend to establish a data repository.
There are some initiatives the EC or its projects are supporting. OpenAIRE for example is creating a dashboard to increase discovery of COVID19 research and EMBL/EBI are rapidly deploying a COVID19 research data platform that should be integrated with EOSC to facilitate data sharing.
All best
Sarah
– Show quoted text -From: ***@***.***-groups.org on behalf of SimonParker via RDA-COVID19
Sent: 02 April 2020 13:42
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
Manage my subscriptions: https://www.rd-alliance.org/mailinglist
Stop emails for this post: https://www.rd-alliance.org/mailinglist/unsubscribe/68906