This meeting’s main goal will be to finalise the work of this WG. We will present the work that has been undertaken and showcase the outputs that have been generated in the form of a set of clear guidelines for the FAIR implementation in health research performing organisations (HRPOs). The group originated from RDA P13 when it was a BoF and later established itself as a WG in August 2020, building on work that was concurrently taking place in the EC funded FAIR4Health project (https://www.fair4health.eu/). Whereas that project was focussed on the European context, this WG has a wider remit to address FAIR principles for HRPOs at a global level. Our recommendations will be applicable at this level and we welcome HRPOs to adopt those guidelines and put them into practice. We will use the time in the Plenary 19 session to discuss our guidelines and address questions for potential early adopters.
Collaborative session notes: https://docs.google.com/document/d/1ntiScjYyjTbYgkY6MQltylWuNWtZI5B3g0kI...
- Introduction and objectives of this meeting.
- Background of the WG and results of previous meetings.
- Findings from landscape analysis, impact assessment, and community survey.
- Presentation of guidelines.
- Potential early adopters and next steps.
Researchers, Health Research Performing Organisations, clinicians and healthcare professionals, hospitals, research institutes, funders
This group has mainly focussed 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 has been to have a global reach and to build upon existing work originating from Europe.
The proposed work plan and main activities of this WG include:
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]
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]
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]
Implementation of draft guidelines at the 4-5 HRPOs to test feasibility. [M12-18]
Community surveys to gauge requirements and assess proposed deliverables of the WG. [M1-18]
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]
This WG builds upon previous BoFs in RDA Plenaries 13 (April 2019, Philadelphia), 14 (October 2019, Helsinki) and 15 (April 2020, Virtual) 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. In RDA Plenary 16 (November 2020, Virtual), the launch of this WG on Raising FAIRness in health data and health research performing organisations (HRPOs) was formalised. In addition, other sessions and meetings were held in RDA Plenaries 17 (April 2021, Virtual) and 18 (November 2021, Virtual) to discuss and review the WG progress. The chairs of this WG meet monthly to follow up.
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