Sharing COVID-19 Epidemiology Data

27
May
2020

Sharing COVID-19 Epidemiology Data

By Claire Austin


 

            

RDA COVID-19 Epidemiology 

            

Group Co-chair Liaison:  Priyanka Pillai

Subgroup Moderators:  Claire AustinRajini Nagrani

            

Recommendation title:  Sharing COVID-19 Epidemiology Data

       

Authors: RDA COVID-19 Epidemiology WG

            

DOI: https://doi.org/10.15497/rda00049

            

Date last updated: 4th November 2020

Citation:  RDA COVID-19 Epidemiology WG (2020): Sharing COVID-19 Epidemiology Data, Version 1.0.  DOI: https://doi.org/10.15497/rda00049

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.

 

Abstract

An immediate understanding of the COVID-19 disease epidemiology is crucial to slowing infections, minimizing deaths, and making informed decisions about when, and to what extent, to impose mitigation measures, and when and how to reopen society.

Despite our need for evidence based policies and medical decision making, there is no international standard or coordinated system for collecting, documenting, and disseminating COVID-19 related data and metadata, making their use and reuse for timely epidemiological analysis challenging due to issues with documentation, interoperability, completeness, methodological heterogeneity, and data quality.

There is a pressing need for a coordinated global system encompassing preparedness, early detection, and rapid response to newly emergent threats such as SARS-CoV-2 virus and the COVID- 19 disease that it causes.
The intended audience for the epidemiology recommendations and guidelines are government and international agencies, policy and decision makers, epidemiologists and public health experts, disaster preparedness and response experts, funders, data providers, teachers, researchers, clinicians, and other potential users.

Output Status: 
RDA Supporting Outputs
Review period start: 
Monday, 31 August, 2020 to Monday, 21 September, 2020
Group content visibility: 
Public - accessible to all site users
Primary Domain/Field of Expertise: 
Medical and Health Sciences
Domain Agnostic: 
  • Francoise Genova's picture

    Author: Francoise Genova

    Date: 06 Jun, 2020

    I am not a specialist on Health data sharing by any way, but I am impressed by the work and results of the RDA COVID-19 WG and its sub-Groups. I saw in one of the previous versions of the WG Recommendations and Guidelines that the epidemiology sub-Group was working on a set of diagrams which likely could not stay in the final document for the sake of homogeneity. I am glad to see them in this Supporting Output.

    I see that the document is built on the sub-Group Recommendations and Guidelines, I guess identical to the ones which are listed in the WG document, plus a set of annexes. I suggest to add a section in the main body of the document, explaining the aim of this Supporting Output with respect to the main Recommendation and putting the annexes in context, with a narrative about how they help to build the global picture and 'support' the recommendations and guidelines - if the sub-Group members think that it would be relevant of course.

    Thanks to all those who participated in this endeavour.

    Best regards

    Francoise Genova

  • Claire Austin's picture

    Author: Claire Austin

    Date: 22 Sep, 2020

    On Sept. 21, 2020, the following comment was received by email from Dr. Devyani Gholap (Centre for Cancer Epidemiology, Tata Memorial Centre):

    "The annexes are well written and thoroughly researched. Congratulations on that! In my opinion, the supporting output should have data sources from LMIC (low middle-income countries)."

  • Claire Austin's picture

    Author: Claire Austin

    Date: 22 Sep, 2020

    On Sept. 21, 2020, the following comment was received by email from Arulmani Thiyagarajan (researcher at Leibniz Institute for Prevention Research and Epidemiology):

    First, I would like to congratulate all the RDA collaborators for envisaging a useful and time-appropriate research work like this through an open access platform. I have gone through Annexes 1 and 2. It seems like a great work and wonderful resource for upcoming researchers to look for COVID-19 data and tools in one place.

    ANNEX 1 – COVID-19 Surveillance data and models: Review and analysis, Part 1

    1. Abstract

    a. Abstract “The present paper identifies COVID-19 datasets from official and unofficial sources having worldwide coverage, a few of particular interest having only national level coverage, and two sources of patient level, de-identified data.” Can be made into simpler like ‘The present paper identifies COVID-19 datasets from official and unofficial sources including worldwide to national level coverage, and few sources of patient level data (de-identified).

    b. FAIR can be expanded for better understanding within the brackets.

    2. Background

    a. OECD can be expanded, and there is a missing reference for the same

    b. Objective no. 2, “provide information to help guide”, I would add either help or guide, not both.

    3. Methods

    a. The search strategy (search term, operators used, etc.,) can be explained to give an understanding to the audiences. Though the inclusion and exclusion criteria are mentioned, it would be best to show the papers found in the search like a CONSORT diagram.

    b. I would suggest highlighting the databases covered in the search, which would be more appropriate.

    c. Is there any reason to choose only PubMed and google searches? If so, it can be elaborated.

    ANNEX 2 –COVID-19 Questionnaires, surveys, and item banks: Overview of clinical- and population-based instruments

    1. Background

    a. Second line “around the world”, needs to be capitalized

    2. Methods

    a. In second paragraph, starting with ‘The Maelstrom’ sentence is grammatically wrong and needs revision."

  • Claire Austin's picture

    Author: Claire Austin

    Date: 05 Nov, 2020

    Thank you for all of your comments. The final version of the supporting output has been uploaded.

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