WG on Guidelines for implementing FAIR open data policy in HRPO
Submitted by Eva Méndez
- Collaborative Session Notes: https://docs.google.com/document/d/1BLVU66xO3woSgjhwK9aOhDybSy9oACEG9MwDm9IIxHI/edit?usp=sharing
- Remote access: https://zoom.us/j/198324436
*This is not a BoF, it is a proper WG meeting" but I can not submit the proposal for a workshop of the WG since it is not yet formaly stablished.
We have done two previous BoF to test with the community if it did make sense to make a WG: First in P13 (Philadelphia) to test what are the main issues and tools to ask the community about the need of opening/fairifying health Resear data, asking the questions about the main problems, social, technical and cultural barriers to prevent progress on FAIRifying Health research data, as well as the benefits of doing it. Second P14 (Helsinki) about the need of having a WG willing to give HRPO (Health Research Performing Organization) a set of clear and simple guideliness to Stablish an aligned FAIR Data policy at institutional level.
After these two meetings (BoF) the attendance and the promoters agreed upon to create a clear and executive WG to deliver this Guideliness, applicable world-wide. So, we are currently working to have the Case Statement approved, but for the time of Melbourne (P15) meeting the WG will be active and performing their first steps.
So the objectives of the meeting at RDA P15 are clearly stablished:
1- To explain and validate with the audience (hopefully not only EU centric) the case statement.
2- To present the draft of the first approach to the principles and steps to be included in a HRPO policy for FAIR data.
3- To indentify the cultural- regional issues on adopting the principles and steps by different HRPO in the world.
4- To have a first draft for discussion of principles and steps to guide Health Research Performing Organizations to create a policy (internationally valid) for FAIRdata.
5- To involve a broader community to align the proposal of the HRPO policy on FAIR data.
This meeting could be handled in a 1.30 timeframe slot and it will be focusing on discusion. The draft agenda could be:
1. - Introducing the aims and objectives of the WG
2. - Explaining the context and the timeline for the WG. Acepting the challenge of have done and approved the guideliness in 3 Plenaries: Melbourne (15), Costa Rica (16) and Edimbourgh (17)
3. - Presentation of a proposal of key principles to be included in the guidelines: Discussion, voting (Mentimiter) and agreements
4. - Presentation and discussion of the main 10 steps of the policies guidelines.
5. - Are 5 princilples, 10 steps, enough to guide all HRPO to stablish a "common" policy on FAIR research data.
6.- Discussion and proposal of discussion events at local levels (at least: USA, Australia and EU)
As we mentioned before this WG builds upon to previous BoFs in RDA 13 and 14 about the need of creating very very simple and useful guideliness for RPOs in health managers to stablish a common policy on FAIR data for Health/clinical Research. Most of the cases, the people capable and authorized to stablish policies in Health Research Performing Organizations are researchers and physicians that they do not know anything about FAIR and other technical issues, but they are really willing to put this in place in their research institutions
The WG will be build on the Health Research Data IG where there is a venue for discussion and stablishement.
The WG has also the guarantee of the involvement of the FAIR4Health EU H2020 funded project that legitimizes the follow up of the main targeted objectives.
FAIR4Health website: https://www.fair4health.eu
Health data IG: https://www.rd-alliance.org/groups/health-data.html
FAIR4Health @ OSF (Open Science Framework): https://osf.io/4z3nd
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