• Output Type: Other Output
  • Output Status: Not Endorsed
  • Review Period End: 2020-06-08
  • DOI:
  • Group: RDA-COVID19-Omics
  • Standards:
  • Regions:
  • Language:
  • Non RDA Author(s)

  • Adopters

  • Abstract

    Please note:  this is the landing page for the 5 draft versions of the RDA COVID-19 Working Group Recommendations and Guidelines on Data Sharing. These materials are made available following the RDA guiding principle of openness, to allow members and the wider community to view the progression of the document as well as comments received during the 5 review cycles.

    The final version of the document can be found:

    RDA COVID-19 Working Group

    Group Co-chairs: Juan Bicarregui, Anne Cambon-Thomsen, Ingrid Dillo, Natalie HarrowerSarah Jones, Mark Leggott, Priyanka Pillai
    Subgroup Moderators:

    Clinical: Sergio BoniniDawei LinAndrea Jackson-Dipina, Christian Ohmann

    Community Participation:  Timea BiroKheeran DharmawardenaEva MéndezDaniel MietchenSusanna SansoneJoanne Stocks

    Epidemiology:  Claire AustinGabriel Turinici

    Indigenous Data: RDA International Indigenous Data Sovereignty Interest Group

    Legal and Ethical: Alexander BernierJohn Brian Pickering

    Omics: Natalie MeyersRob Hooft

    Social Sciences: Iryna KuchmaAmy Pienta

    Software: Michelle BarkerHugh ShanahanFotis Psomopoulos

    Editorial team: Christoph Bahim, Alexandre BeaufaysIngrid Dillo, Natalie Harrower, Mark Leggott, Nicolas LoozenRobyn NicholsonPriyanka Pillai, Mary Uhlmansiek, Meghan Underwood, Bridget Walker
    Recommendation title:  RDA COVID-19; recommendations and guidelines, 5th release (final draft) 28 May 2020
    Authors: RDA COVID-19 Working Group and Subgroup Members
    DOI: https://doi.org/10.15497/rda00046
    Citation:  RDA COVID-19 Working Group. recommendations and guidelines. Research Data Alliance, 2020. DOI: https://doi.org/10.15497/rda00046
    Note: The overarching COVID-19 Working group includes the specific working group members, events, posts, wiki and documents can be viewed here:

    1. Clinical
    2. Community Participation
    3. Epidemiology
    4. Indigenous Data
    5. Legal and Ethical
    6. Omics
    7. Social Sciences
    8. Software
    Disclaimer: The views and opinions expressed in this document are those of the individuals identified, and do not necessarily reflect the official policy or position of their respective employers, or of any government agency or organisation.

    Context:

    During a pandemic, data combined with the right context and meaning can be transformed into knowledge for informing public health responses. Timely and accurate collection, reporting and sharing of data with the research community, public health practitioners, clinicians and policy makers will inform assessment of the likely impact of a pandemic to implement efficient and effective response strategies.

    Public health emergencies clearly demonstrate the challenges associated with rapid collection, sharing and dissemination of data and research findings to inform response. There is global capacity to implement systems to share data during a pandemic, yet the timeliness of accessing data and harmonisation across information systems are currently major roadblocks. The World Health Organisation’s (WHO) statement on data sharing during public health emergencies clearly summarises the need for timely sharing of preliminary results and research data. On 28 May 2020, the G7 Science and Technology Ministers’ Declaration on COVID-19 was issued, which calls for government-sponsored COVID-19 epidemiological and related research results, data, and information to be accessible to the public to the greatest extent possible.There is also a strong support for recognising open research data as a key component of pandemic preparedness and response, evidenced by the 117 cross-sectoral signatories to the Wellcome Trust statement on 31st January 2020, and the further agreement by 30 leading publishers on immediate open access to COVID-19 publications and underlying data.

    Objectives:

    The objectives of the RDA COVID-19 Working Group (CWG) focusing on essential Clinical, Community Participation, Epidemiology, Indigenous Data, Legal & Ethical, Omics, and Social Sciences, and Software are:

    1. to clearly define detailed guidelines on data sharing under the present COVID-19 circumstances to help stakeholders follow best practices to maximize the efficiency of their work, and to act as a blueprint for future emergencies;
    2. to develop guidelines for policymakers to maximise timely, quality data sharing and appropriate responses in such health emergencies;
    3. to address the interests of researchers, policy makers, funders, publishers, and providers of data sharing infrastructures.

    5th Release – Final Draft for public comment:

    The RDA COVID-19 Working Group (CWG) members bring various expertise to develop a body of work that comprises how data from multiple disciplines inform response to a pandemic combined with guidelines and recommendations on data sharing under the present COVID-19 circumstances. The work has been divided into four research areas with four cross cutting themes, as a way to focus the conversations, and provide an initial set of guidelines in a tight timeframe. The detailed guidelines in this body of work is aimed to help stakeholders follow best practices to maximise the efficiency of their work, and to act as a blueprint for future emergencies. The recommendations in the document are aimed at helping policymakers and funders to maximise timely, quality data sharing and appropriate responses in such health emergencies.

    The CWG is addressing the development of such detailed guidelines on the deposit of different data sources in any common data hub or platform. The guidelines aim at developing a system for data sharing in public health emergencies that supports scientific research and policy making, including an overarching framework, common tools and processes, and principles that can be embedded in research practice. The guidelines contained herein  address general aspects that data should adhere to, for example the FAIR principles (that research outputs should be Findable, Accessible, Interoperable, and Reusable), or  the adoption of research domain community standards.

    These detailed guidelines are supplemented with higher level recommendations aimed at the other stakeholder groups who need to work together with the researchers and data stewards to realise the timely and open sharing of research data as a key component of pandemic preparedness and response.

    The work has been divided into four research areas with four cross-cutting themes, as a way to focus the conversations, and provide an initial set of guidelines in a tight timeframe.

    The RDA COVID-19 WG was initiated after a conversation between the RDA and the European Commission. The first meeting of the CWG to determine the work was held in March. As of May, the CWG counted over 440 members, evenly spread across the different sub-groups. This effort also reflects the work of a host of other RDA Working Groups, as well as external stakeholder organisations, that has developed over a number of years.

    The CWG and the sub-groups operate according to the RDA guiding principles of Openness, Consensus, Balance, Harmonisation, Community-driven, Non-profit and technology-neutral and are open to all.

    The 5th release (final draft) starts in Section 2 with an overview of foundational, overarching elements that emerged across the different research areas. These recommendations touch upon a number of well-known topics in research data sharing and align to the statements made by many organisations and governance bodies, including but not limited to, the WHO, the G7 Science and Technology Ministers, the publishing industry and Wellcome Trust.In Sections 3 to 6 the focus is on the COVID-19 related research areas. Each section starts with a description of the area and the focus and scope of the work done, followed by the actual recommendations and guidelines. In sections 7 to 10 this same structure is used for the four cross-cutting themes. The document contains an extended glossary of terms to support the reader (Section 11), an overview of useful additional resources (Section 12) and a list of references (Section 13). Section 14 lists the contributors to this work.

    Timing and Future Releases:

    This is the fifth and final draft of the Recommendations and Guidelines from the RDA COVID-19 working group, and is open for public comment until 8th of June 2020. Following the open period, feedback will be considered and then the WG will seek endorsement of the document from the RDA governance bodies prior to final publication.

    More information and insights on the plans for those releases, as well as highlights from the sub-groups are given during the informative webinars – see COVID-19 WG Events page for details and to access previous recordings and presentations.

    Request for Comments:

    In the spirit of the RDA community and its open process, your feedback on the content of the releases, the scope, the direction, are vital for all involved to shape and focus the document and the sections to be a useful and meaningful tool.

    A request from the editorial team: please indicate the section of the document or the indicator that your comment is about, and, if possible, also include a suggestion for improvement. Many thanks!

  • Impact Statement

  • Primary Field or Expertise

    Mathematics
  • Explanation of Sustainable Development Goals

  • Citations

  • Primary Domain: Natural Sciences
  • RDA Pathways:
  • Group Technology focus: Data (Output) Management Planning
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  • Stakeholders:
  • Sustainable Development Goals:
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