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The Value of RDA for COVID-19

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13 July 2020 59249 reads

Under public health emergencies, and particularly the COVID-19 pandemic, it is fundamental that data is shared in both a timely and an accurate manner. This coupled with the harmonisation of the many diverse data infrastructures is, now more than ever, imperative to share preliminary data and results early and often. It is clear that open research data is a key component to pandemic preparedness and response.

In late March, RDA received a direct request from one of its funders, the European Commission, to create global guidelines and recommendations for data sharing under COVID-19 circumstances. Over 600 data professionals and domain experts signed up and began work in early April 2020. They have produced a rich set of detailed guidelines to help researchers and data stewards follow best practices to maximise the efficiency of their work, and to act as a blueprint for future emergencies; coupled with recommendations to help policymakers and funders to maximise timely, quality data sharing and appropriate responses in such health emergencies.

On 30 June 2020, RDA published the final version of the RDA COVID-19 Recommendations and Guidelines on data sharing covering four research areas – clinical data, omics practices, epidemiology and social sciences - complemented by overarching areas focusing on legal and ethical considerations, research software, community participation and indigenous data.

The Outputs

The COVID-19 WG, from April 1st through June 30th, 2020, created more than five releases of the recommendations and guidelines, leading to the final endorsed version, "RDA COVID-19 Recommendations and Guidelines for Data Sharing," with ongoing efforts to add and review materials.

 

Citation:  RDA COVID-19 Working Group. Recommendations and Guidelines on Data Sharing. Research Data Alliance, 2020. DOI: https://doi.org/10.15497/rda00052

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Resources, Briefings, White Papers

  • Final Executive Summary
  • RDA COVID-19 Press Release 30 June 2020 final - June 2020

  • FAIRsharing.org RDA COVID-19 Resources

    • This collection provides an at-a-glance view of data and metadata standards (e.g., reporting guidelines, models, formats, terminologies) as well as repositories (databases and knowledgebases) suitable for the deposition and sharing of clinical research, genomics, transcriptomics, structural and epidemiological research. These represent the research areas covered by the RDA COVID-19 Working Group (WG) and sub-groups, which create guidelines to help: (i) stakeholders follow best practices for sharing COVID-19 data; and (ii) policymakers maximise timely data sharing and appropriate responses in such health emergencies. This collection also includes the COVID-19 Collection specific for repositories that already contain COVID-19 datasets.

  • Enhancing Access to Research Data to Combat COVID-19:  Recommendations to Funders (2020)

    • This briefing focuses on the higher level recommendations to help policymakers and funders maximise timely, quality data sharing and to formulate appropriate responses during public health emergencies, and are meant to provide expert advice to funders on how to support and foster the best possible approach to research dissemination at a systems level, while also providing guidance on shaping grant conditions for COVID-19 research that will promote timely and reusable sharing of research outputs.

  • Sharing COVID-19 Epidemiology Data, RDA COVID-19 Epidemiology Working Group (2020)

    • This white paper addresses data-sharing in epidemiology research, including topics such as "A Full Spectrum View of the COVID-19 data domain: An Epidemiological Data Framework," "Common Data Models and Full Spectrum Epidemiology: Epi-STACK framework for COVID-19 epidemiology datasets," and "Epi-TRACS: Rapid detection and whole system response for emerging pathogens such as SARS-CoV-2 virus and the COVID-19 disease that it causes."

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Academic Publications, Preprints & Correspondence

  • Pickering B, Biro T, Austin CC, et al. Radical collaboration during a global health emergency: development of the RDA COVID-19 data sharing recommendations and guidelines [version 1; peer review: awaiting peer review]. Open Research Europe 2021, 1:69 (https://doi.org/10.12688/openreseurope.13369.1)
  • Russo Carroll, S, Akee, R, Cormack, D, Kukutai, T, Lovett, R, Suina, M, Rowe, RK. Indigenous Data During COVID-19: From Outside to Within. Frontiers in Medical Sociology [manuscript submitted for publication].
  • Hanahoe, H, Austin, C, Shanahan, H. “Sharing COVID Data? Check These Recommendations and Guidelines.” Nature News, Nature Publishing Group, 20 Apr. 2021, www.nature.com/articles/d41586-021-01028-5. 
  • Hallinan, D, Bernier, A, Cambon-Thomsen, A, et al. (2021). International transfers of personal data for health research following Schrems II: a problem in need of a solution. Eur J Hum Genet. https://doi.org/10.1038/s41431-021-00893-y
  • Krige, J, Leonelli, S (2021) Mobilizing the Transnational History of Knowledge Flows. COVID-19 and the Politics of Research at the Borders, History and Technology, DOI: https://doi.org/10.1080/07341512.2021.1890524
  • Summary Article:  Austin CC, Bernier A, Bezuidenhout L et al. Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group [version 2; peer review: 2 approved, 1 approved with reservations]. Wellcome Open Res 2021, 5:267 (https://doi.org/10.12688/wellcomeopenres.16378.2)
  • Rodriguez-Lonebear, D, Barceló, NE, Akee, R, Russo Carroll, S. (2020). American Indian Reservations and COVID-19: Correlates of Early Infection Rates in the Pandemic. Journal of Public Health Management and Practice, 26(4): 371-7, DOI: 10.1097/PHH.0000000000001206.
  • Austin, CC, Widyastuti, A, El Jundi, N, Nagrani, R, RDA-COVID19-WG (2020). COVID-19 Surveillance data and models: Review and analysis. http://dx.doi.org/10.2139/ssrn.3695335 
  • Sauermann, S, Kanjala, C, Templ, M, RDA-COVID19-WG (2020). Preservation of individuals’ privacy in shared COVID-19 related data. http://dx.doi.org/10.2139/ssrn.3648430
  • Schmidt, CO, Nagrani, R, Stange, C, Löbe, M, Zeleke, A, Fabre, G, Koleva, S, Sauermann, S, Greenfield, J, Austin, CC, RDA-COVID19-WG (2020). Questionnaires, surveys and item banks: Overview of clinical and population-based instruments. http://dx.doi.org/10.2139/ssrn.3652027  
  • Tonnang, HEZ, Greenfield, J, Mazzaferro, G, Austin, CC, RDA-COVID19-WG (2020). COVID-19 Emergency public health and economic measures causal loop: Laying the groundwork for a computable framework. http://dx.doi.org/10.2139/ssrn.3686027 

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Joint Statements

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RDA FOR COVID-19 Events

A series of weekly "RDA COVID-19 Update Webinar" occurred almost every Tuesday between April and June 2020 and provided updates on the overarching COVID-19, Legal and Ethical, Research Software, Community Participation Working Groups, Indigenous Data contribution, and the four research themes (clinical, omics, epidemiology, social sciences), along with an opportunity for members to ask questions. Recordings and presentations from these sessions are posted on the Events meeting links.

Past events include:

 

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RDA for COVID-19 Profiles

The following are a series of profiles of RDA COVID-19 working group contributors generated by regional programmes as a means of highlighting the regional contribution to this global effort.

My biggest takeaway from this experience is that there are no problems, only solutions. We, humanity, can find and build those solutions that will get us past COVID-19 and prevent future such disasters. The question is, will we do it.

Claire Austin: My experience as a participant in the RDA COVID-19 Working Group

 

This project clearly demonstrated the benefit of having the research software community collaborate on important strategic activities to increase the recognition and value of research software as a fundamental and vital component of research worldwide.

Michelle Barker: My experience as a participant in the RDA COVID-19 Working Group
 

Pre-COVID, this type of report would have typically taken RDA years to produce. The urgency of this situation made it possible to achieve what would have previously been considered impossible. Furthermore, it was done entirely virtually. This is unprecedented for RDA, which has always relied on face-to-face meetings to progress its work. I think we've realised how much we can achieve even by meeting virtually.

Kheeran Dharmawardena: My experience as a participant in the RDA COVID-19 Working Group

 

I had a strong desire to contribute in some way to the global response. The Digital Repository of Ireland (DRI), where I am Director, had released a statement about how, as a digital archive for HSS data, we intended to support preservation and access to COVID-19 related data, to fast track data deposit, and support to members in our areas of expertise.

Natalie Harrower, Director of the Digital Repository of Ireland

 

The recommendations are global and not just European, and they are based on sound community and vulnerable-group ethical imperatives. So I for one would like to see a more fundamental consideration of data sharing recommendations like this tied in with broader human-rights type discussion.

Brian Pickering, Senior Research Fellow, University of Southampton

 

The geographical as well domain diversity of the group’s expertise is well reflected in the document. A global pandemic impacts everyone; the response can’t be localised. An international initiative such as RDA demonstrates the power of a global community, knowledge and connectivity. 

Priyanka Pillai: My experience as a participant in the RDA-COVID19 Working Group

RDA for COVID-19 in the News

News & Articles

Press Clippings & Sharing

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The Working Group & Subgroups

The main COVID-19 WG was responsible for the overall development of the recommendations and for providing community updates on the initiative, and encompassed the members of the subgroups.

The COVID-19 sub-groups by expertise and interest:

  1. Clinical
  2. Omics
  3. Epidemiology
  4. Social Sciences
  5. Community Participation
  6. Indigenous Data
  7. Legal and Ethical
  8. Software

The RDA COVID-19 activities are conducted under the RDA guiding principles of Openness, Consensus, Balance, Harmonisation, Community-driven, Non-profit and Technology-neutral. The results and outputs are open to all.

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AttachmentSize
File RDA-US COVID19 Panel Discussion 7Aug2020.pptx7.22 MB
File COVID19-webinar-RDA France-ACT-9_7_2020-final.pptx5.27 MB
File RDA COVID19 STM 8 July 2020 final.pptx3.48 MB
File RDA COVID19 Dataverse 17 June 2020.pptx1.58 MB
File STM RDY-RDA COVID_ID, 15-06-2020.pptx1.58 MB
File RDA-Epidemiology-Webinar-29Oct2020-English-FINAL.pptx8.01 MB
File RDA-Epidemiology-Webinar-29Oct2020-Spanish-FINAL.pptx8.02 MB
File RDA-Epidemiology-Webinar-29Oct2020-French-FINAL.pptx8.05 MB