[rda-covid19] standards and repositories

02 Apr 2020
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Hi all,
I fully agree with Sarah, and for appropriate *standards* and
*repositories* we, the *RDA FAIRsharing WG* (1,2, 3), are happy to work
with you.
Pete, the FAIRsharing coordinator is already working on a collection of
resources; we will wait to hear on how to best help you to add
missing/relevant resources.
Kind regards,
Susanna
1. https://fairsharing.org
2.
https://rd-alliance.org/group/fairsharing-registry-connecting-data-polic...
3. https://doi.org/10.1038/s41587-019-0080-8
--
Prof. Susanna-Assunta Sansone, PhD
Associate Director, Oxford e-Research Centre
Associate Professor, Dep of Engineering Science
University of Oxford, UK
Data Readiness Group:
https://datareadiness.eng.ox.ac.uk
ORCiD: 0000-0001-5306-5690
skype: susanna-a.sansone
twitter: @SusannaASansone
--

  • Philippe Després's picture

    Author: Philippe Després

    Date: 02 Apr, 2020

    Hi all,
    I guess this is at the intersection of several topics discussed here?
    https://www.go-fair.org/implementation-networks/overview/vodan/
    Best,
    Philippe

  • Susanna-Assunta Sansone's picture

    Author: Susanna-Assunta...

    Date: 02 Apr, 2020

    Absolutely, Philippe.
    For example, FAIRsharing is also at the core of the GO-FAIR StRePo IN
    (1), as well as a being an ELIXIR resource (2), also part of IMI
    FAIRplus, EOSC-Life and the NIH Data Commons, which others on this list
    have rightly mentioned as key players in this case.
    Kind regards,
    Susanna
    1. https://www.go-fair.org/implementation-networks/overview/fair-strepo
    2. https://elixir-europe.org/platforms/interoperability/rirs

  • Jay Greenfield 's picture

    Author: Jay Greenfield

    Date: 02 Apr, 2020

    Currently several of us are funded to develop a FAIR metadata hub in East Africa for demographic surveillance, epidemiological surveillance, clinic data and now impromptu covid19 testing data. It aims to reuse existing datasets and facilitate the creation of data networks that can string together existing East Africa research centers to create new research.
    It is just starting up but we have done a bunch of prep work in connection with how discovery might work. Perhaps this might be useful to some people.
    Jay Greenfield, Ph.D.
    Data Documentation Initiative (DDI)
    ________________________________
    From: ***@***.***-groups.org <***@***.***-groups.org> on behalf of SAS via RDA-COVID19 <***@***.***-groups.org>
    Sent: Thursday, April 2, 2020 1:12 PM
    To: RDA-COVID19 <***@***.***-groups.org>
    Cc: ***@***.*** <***@***.***>; Pete
    <***@***.***>
    Subject: [rda-covid19] [rda-covid19] standards and repositories
    Hi all,
    I fully agree with Sarah, and for appropriate standards and repositories we, the RDA FAIRsharing WG (1,2, 3), are happy to work with you.
    Pete, the FAIRsharing coordinator is already working on a collection of resources; we will wait to hear on how to best help you to add missing/relevant resources.
    Kind regards,
    Susanna
    1. https://fairsharing.org
    2. https://rd-alliance.org/group/fairsharing-registry-connecting-data-polic...
    3. https://doi.org/10.1038/s41587-019-0080-8
    --
    Prof. Susanna-Assunta Sansone, PhD
    Associate Director, Oxford e-Research Centre
    Associate Professor, Dep of Engineering Science
    University of Oxford, UK
    Data Readiness Group:
    https://datareadiness.eng.ox.ac.uk
    ORCiD: 0000-0001-5306-5690
    skype: susanna-a.sansone
    twitter: @SusannaASansone
    --
    On 02/04/2020 13:57, sjDCC via RDA-COVID19 wrote:
    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 <***@***.***-groups.org> on behalf of SimonParker via RDA-COVID19 <***@***.***-groups.org>
    Sent: 02 April 2020 13:42
    To: RDA-COVID19 <***@***.***-groups.org>
    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
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  • Carlos Luis Parra-Calderon's picture

    Author: Carlos Luis Par...

    Date: 03 Apr, 2020

    I fully agree with the contributions made by Elixir and Go-FAIR colleagues, but do not forget that the domain is biomedicine and health, and in this field there is a large background of specific semantic representation standards for biomedicine and health (Snomed CT, LOINC, ICD, HL7 landscape, etc...).
    For information to be actionable in research and epidemiology, it must be FAIR but with semantic interoperability at the highest level.
    All the Best.
    Carlos.
    Carlos Luis Parra Calderón
    Jefe de Sección de Innovación Tecnológica
    Hospital Universitario Virgen del Rocío
    Servicio Andaluz de Salud
    Consejería de Salud
    Avda. Manuel Siurot S/N - 41013 Sevilla
    Tel: +34 955 01 36 62 - (31 36 62)
    Móvil: +34 697 95 48 64 - (75 48 64)
    www.huvr.es
    ***@***.***
    skype: carlos.luis.parra
    Director del Grupo de Investigación e Innovación en Informática Biomédica, Ingeniería biomédica y Economía de la Salud.
    Instituto de Biomedicina de Sevilla
    www.ibis-sevilla.es/
    Asistente Honorario.
    Escuela Técnica Superior de Ingeniería Informática.
    Universidad de Sevilla.
    _________________________________________________________________________________________________
    Head of Technological Innovation
    Virgen del Rocío University Hospital
    Head of Research and Innovation in Biomedical Informatics, Biomedical Engineering & Health Economy,
    Institute of Biomedicine of Seville
    Honorary assistant
    School Computer Science
    University of Seville
    _________________________________________________________________________________________________

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