Guidelines for Health Research Performing Organizations (HRPOs) to implement a FAIR data policy
Submitted by Kiko Núñez-Benjumea
This BoF has 3 main objectives:
Gather international expressions of interest to collaborate in drafting easy-to-apply guidelines for implementing a FAIR data policy in health research directed towards managers of HRPOs.
To create a new RDA WG on this topic under the Health Data IG umbrella.
To outline the case statement for this WG
There is a preliminary work on these guidelines made by FAIR4Health H2020 project that will serve as a starting point for the discussions. This work is based on an exploratory analysis of several dimensions, such as: ethical issues, legal framework, security, privacy, cultural barriers and technical aspects that should be addressed.
This BoF will help to uncover similar international initiatives and projects and seek to promote convergence and coordination across our work at different levels (align strategies, coordinate operations, exchange project outputs, …)
Collaborative session notes: https://docs.google.com/document/d/1TXORbMBJggxUna5Bc5pFF2dYeNhKXBQ_oFIJlHqMvnY/edit?usp=sharing
(15’) Introduction to the session.
(10’) Landscape of FAIR implementation policies and practices
(10’) Perspective from the Health Data IG point of view
(40’) Group activity
(15’) Wrap-up, conclusions and next steps
FAIR4Health project organized a very introductory BoF during the RDA P13 in Philadelphia, in order to introduce the objectives of the project and to meet the Community. This BoF was the beginning for assessing FAIR data Policy Implementation in Health Research. First contacts were made with related WG/IGs such as Reproducible Health Data Services WG and Health Data IG in order to discuss the best way to contribute to the RDA community.
Since then FAIR4Health project has made relevant advances in the definition of a guideline for implementing FAIR/Open data policy in health research addressing the following topics related to the implementation of such policy: technical barriers, ethical implications, security requirements, legal framework and cultural barriers.
This work was done following different methodological approaches: In one hand, a literature review addressed a comprehensive analysis of both scholarly and web-based publications about FAIR in general and specifically in health data management. The analysis resulted in an overview of the current status of the research on FAIR data, and specifically identified studies dealing with research data in the health domain. On the other hand, direct observations of stakeholders and users was performed through qualitative short interviews with experts, general open surveys and focus groups.
In this new BoF we want to start working in deep with the RDA international community to discuss and develop a guideline for Health Research Performing Organizations (HRPO) when defining and addressing FAIR/Open data policies.
FAIR4Health deliverable D2.3: “Guidelines for implementing FAIR Open Data policy in health research” (https://osf.io/3u7dt/)
FAIR4Health website (www.fair4health.eu)
FAIR4Health Twitter (https://twitter.com/Fair4Health)
FAIR4Health public repository (https://osf.io/ubvsh/)
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