WG on Raising FAIRness in health data and health research performing organisations

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22 Jan 2021
Meeting objectives: 

This meeting will primarily demonstrate the ongoing tasks that were outlined in the case statement. Specifically, we will discuss the global landscape analysis of FAIR adoption which was initiated by the co-chairs and which requires input and review from the WG and the community. After officially kicking off the WG at VP16, we anticipate nearing completion of this landscape analysis. Based on the initial findings from this report, we will use the meeting to also discuss the other concurrent tasks of (1) impact assessment of any identified barriers, and (2) analysis of national and international level policies and guidelines. These latter two tasks are projected to run further on compared to the landscape analysis and this meeting will be used to discuss how this time should be managed and to invite participation from WG members. Finally, we will (provisionally) also show initial results from a (3) community survey that polled requirements from the community.

Meeting agenda: 

Collaborative session notes (main session): https://docs.google.com/document/d/10e7AwD2zaYUibgTpkqO8WYcPI0NyvhsZKKKnMmURd1Q/edit?usp=sharing 

Collaborative session notes (repeat session): https://docs.google.com/document/d/1uTqCziTHpsy10rq0bv_e-ylvhwASLebGWYC2555ngso/edit?usp=sharing

  1. Introduction and objectives of this meeting.

  2. Background of the WG and results of previous meetings.

  3. Results of landscape analysis: process followed and current status.

  4. FAIRness for HL7 FHIR (provisional)

  5. Initial findings from impact assessments and policy analyses.

  6. Community survey results (provisional).

  7. Next steps.

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 guidelines. 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, 14 and 15 about the necessity for creating useful and straightforward guidelines for HRPOs by establishing the initial approach of the principles and steps to be included in a global HRPO policy for FAIR data.

In the beginning of June 2020, the case statement prepared for this WG was submitted for review by the RDA TAB and finally this WG was endorsed by the RDA Council in August 2020. Finally, in RDA Plenary 16, the launch of this WG on Raising FAIRness in health data and health research performing organisations (HRPOs) was formalized. The chairs of this WG meet monthly to follow up.

Type of Meeting: 
Working meeting
Avoid conflict with the following group (1): 
Avoid conflict with the following group (2): 
Avoid conflict with the following group (3): 
Meeting presenters: 
S. Venkataraman, Celia Alvarez, Kristan Kang, Anupama Gururaj, Eva Mendez