WG on Guidelines for Health Research Performing Organizations to implement FAIR Data Policy

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04 Aug 2020
Meeting objectives: 

The main objective of this meeting is to build upon the previous three BoFs (P13 Philadelphia, P14 Helsinki and VP15 Melbourne), consolidating what those meetings established and formally inaugurate this new WG. This meeting will also review in depth the key principles that will inform the RDA output and form the basis for the guidelines: a unifying and globally applicable FAIR data policy for HRPOs. Participants will be polled to gather feedback and we will also identify volunteers to undertake specific tasks (see the section on activities), at least in the short to medium term. Specifically, this will take the form of gathering the requisite information to create a global landscape analysis of FAIR data policies in the health research field.

Meeting agenda: 


Collaborative Notes Link: https://docs.google.com/document/d/1N2XFZthazz8KGoLXx4PSEU14YZIjHKh3zT6a...

  1. Official launch of the WG.

  2. Introduction to the objectives of the WG.

  3. Advances made on this topic: process followed, past and present work, and current status.

  4. In-depth discussion of nascent guidelines and steps previously identified to guide HRPOs to create a policy for FAIR data (feedback from the audience).

  5. Alignment with other RDA WGs.

Target Audience: 

Researchers, Health Research Performing Organizations, clinicians and healthcare professionals, hospitals, research institutes, funders

Group chair serving as contact person: 
Brief introduction describing the activities and scope of the group: 

This group will mainly focus on collating and reviewing existing FAIR policies around the world, to compare and contrast these, and consequently produce a set of unifying core principles that can be adopted by HRPOs. Where there is missing guidance, there may be scope to augment the core principles with novel policies. Throughout, the emphasis will be to have a global reach and will build upon existing work originating from Europe.

The proposed work plan and main activities of this WG include:

  1. Review of the current landscape for FAIR adoption of health research data taking into consideration levels of privacy and ethical considerations granted to such data in regions around the world. This will be based on existing and recently completed work done by F4H in the EU context and the EOSC Landscaping Work currently being carried out. [M1-6]

  2. Assessing the impact of such restrictions in terms of research, as well as financial and societal impacts, drawing on previously mentioned work by F4H, EOSC and others.[M4-9]

  3. Analysis of national and international guidelines and policies, and their enforcement to compare and contrast and provide a foundation for the WG’s own recommendations. [M6-14]

  4. Implementation of draft guidelines at the 4-5 HRPOs to test feasibility. [M12-18]

  5. Community surveys to gauge requirements and assess proposed deliverables of the WG. [M1-18]

  6. Deliver final output as a written set of principles to be adopted by the HRPO community, with care to be taken that these should not be seen as rules that need to be strictly followed depending on the particular regional and local contexts. [M18]

Short Group Status: 

This WG builds upon previous BoFs in RDA Plenaries 13 and 14 about the necessity for creating useful and straightforward guidelines for HRPOs by establishing a common set of principles for FAIR data policies. Furthermore, a virtual session was held at Plenary 15, presenting the WG's objectives and establishing the initial approach of the principles and steps to be included in a global HRPO policy for FAIR data. 

As of 31/07/2020, we have passed community and TAB reviews, and are awaiting the outcome of the Council review. We expect to have this response by mid-August. We will review and incorporate any reviewers' recommendations and at Plenary 16 we will be able to present the working group formally.

Type of Meeting: 
Working meeting
Avoid conflict with the following group (1): 
Avoid conflict with the following group (2): 
Meeting presenters: 
S. Venkataraman, Celia Alvarez, Kristan Kang, Anupama Gururaj