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The issues actually encountered in sharing COVID-19 health related data across borders: lack of solutions or lack of dialogue ?

  • Creator
    Discussion
  • #134141

    Anne Cambon-Thomsen
    Participant

    Collaborative session notes: https://docs.google.com/document/d/1jsB0FKD49VBK8L7yHusxN_-Xjkkkywe6shqKSd9FHIw/edit?usp=sharing 
    Part 1: Presentations (45-50­­­ min)
    Topic 1: Cases or questions encountered as obstacles to data sharing attributed to legal/ethical aspects: researcher / data steward level
    Speakers to be confirmed; for the moment accepted talk by Claudia Bauzer Medeiros (Brazil); another speaker is to be confirmed. Maximum 3 speakers, 5-8 min to describe a case
    Topic 2: Cases or questions encountered as obstacles to data sharing attributed to legal/ethical aspects: policy maker / legal office
    Speakers to be confirmed; for the moment accepted talk by Dara Hallinan (Germany); another speaker is to be confirmed. Maximum 3 speakers, 5-8 min to describe a case
     Topic 3: Cases or questions encountered as obstacles to data sharing attributed to legal/ethical aspects: funders / editors
    Speakers to be confirmed; for the moment accepted talk by Francis P. Crawley (Belgium); another speaker is to be confirmed. Maximum 3 speakers, 5-8 min to describe a case
    Part 2: Interactive discussion: 40-45 min (Moderators: Anne Cambon-Thomsen (France), Brian Pickering (UK), Alexander Bernier (Canada))

    To get proposals from audience of other examples of issues and of ways / paths or rules to be efficient in addressing them; especially a grid will be proposed based on the existing RDA COVID-19 recommendations and gaps will thus be easier to pinpoint

    To make a typology of such issues actually encountered in order to  identify better the level of the difficulty in the data like cycle and stakeholders at stake
    To start define recommendations or clarification of processes targets n order to better plan the next phase of the work of the group, in line with community needs.

    Conclusion:
    Wrap-up and next actions

    Additional links to informative material
    The RDA-COVID-19 recommendations and guidelines on data sharing. Research Data Alliance. 2020. DOI: https://doi.org/10.15497/rda00052
    Other ouputs of the RDA-COVID-19 WG.  https://www.rd-alliance.org/node/68704/outputs .
    Article currently under review: International transfers of health research data following Schrems II: A problem in need of a solution: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3688392
     

    Are you willing to hold your session at multiple times to accommodate various time zones?
    Yes

    Avoid conflict with the following group (1)
    Ethics and Social Aspects of Data IG

    Avoid conflict with the following group (3)
    RDA COVID-19

    Contact for group (email)
    anne.cambon-thomsen@univ-tlse3.fr

    Group chair serving as contact person
    Anne Cambon-Thomsen

    Meeting objectives
    Context: During the first work of the working group (April-June 2020) legal and ethical considerations related to COVID-19 data sharing were explored and were introduced across the document produced and in a specific chapter (chapter 10) of the RDA-COVID-19 recommendations and guidelines on data sharing. Research Data Alliance. 2020. DOI: https://doi.org/10.15497/rda00052 and other ouputs of the RDA-COVID-19 WG.  https://www.rd-alliance.org/node/68704/outputs .
    During the second part of 2020, the work was oriented on specific issues linked to  a  Court of Justice of the European Union landmark decision from July 16th, 2020 (known as Shrems II), that has potentially significant effects on the ability of researchers to legitimately transfer personal data for health research purposes from countries inside the EU, to third countries outside the EU. An output from this work is an article currently under review and available as pre-print : International transfers of health research data following Schrems II: A problem in need of a solution: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3688392 .
    The current work seeks 1) to map the legal and ethical issues actually encountered by researchers and other stakeholders in sharing health data, especially COVID-19 related data, due to legal/ethical difficulties; 2) to explore whether the existing recommendations and guidelines address them in a sufficient way to solve them; 3) to explore whether new ones are needed especially in the context of the second and third wave of the pandemic.
    The objectives of the session are as follows:

    Gather information / case studies on such actual difficulties
    Exchange across disciplines on such difficulties and harvest good practices in addressing them
    Identify through this dialogue which stakeholders should be addressed in order to make progress in such sharing.

     How? by stimulating discussion with the audience on the current state of such difficulties and using a grid that will be prepared by the organisers of the session that can be supplemented during the session, giving details on stakeholder involved, level of the blocking factor as perceived and as documented (legal, procedural, lack of information, lack of help etc.) ; the session will have two parts: examples of questions encountered and how they can be/are/were addressed through short presentations (Part 1) and an interactive discussion (Part 2).

    Other
    Best day would be the 20th of April; if we run the session at multiple times, the programme may change little. The part 2 would be live, but we could consider part 1 not live but recorded

    Please indicate the breakout slot (s) that would suit your meeting
    Breakout 1, Breakout 2, Breakout 3, Breakout 4

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