FAIR4Health Open Community Membership

One of the key drivers for the project is to facilitate researchers’ skills to reuse and share health research data and to make that data FAIR compliant. To this end, FAIR4Health is building a platform upon which this can be achieved and provides other tools such as the data-privacy-tool and the data-curation-tool to manage datasets specifically aimed at the health research domain. We have also devised a FAIRification workflow, that has undergone revisions through the course of the project so far, and which provides a set of instructions for researchers to follow when thinking about their health research data.

Until now, in the project, some relationships and synergies have been created informally, with participation of some people external to the FAIR4Health consortium through workshops and other dissemination activities. To allow the relevant stakeholders to derive the maximum benefit from the tools developed by FAIR4Health, and the knowledge gained, we are setting up the FAIR4Health Open Community Membership, aiming to create the FAIR4Health Open Community formally. The general public will be able to use the open source software published in the FAIR4Health GitHub repository (under Apache 2.0 license) to directly use the tools or to make their own platform that can be tailored to their own use/purpose. Apart from that, the FAIR4Health Open Community Members are going to be able to access the Privacy-Preserving Distributed Data Mining (PPDDM) models developed and trained within the project. To access this material, interested parties must register as a member of the FAIR4Health open community.

We anticipate that the best way to allow access for researchers who are interested in FAIR4Health, and to exploit the tools that are being developed by the consortium will be through a membership scheme involving the access and reuse of the PPDDM models generated in the project. Consequently, using the FAIR4Health open source code software will facilitate the secure sharing of any health research data therein. This could take the form of established sensitive data handling workflows and technological platforms in various institutions around the world (for example, data safe havens such as the one in the University of Edinburgh ), with the key differentiator of our platform being the emphasis on ensuring FAIRification of data, thus addressing legal and ethical aspects. A membership scheme will also allow the FAIR4Health consortium to better understand and monitor the interest in FAIR4Health results by relevant stakeholders.

There will be an onus to increase membership, but increasing the number of users will in and of itself drive further memberships: there need to be incentives to attract initial recruit members since they will need to be reassured that disclosing members’ personal data (i.e. names and affiliations in the list of FAIR4Health members) will have benefits to them. We anticipate the Membership will have threefold benefits to initial users: firstly, to allow enhancement of the collaborative use of FAIR4Health’s tools and workflows; secondly, to improve reuse of the FAIR4Health source code published on GitHub to make their own platform that can be tailored to their own use/purpose; and third, to have priority in receiving all public dissemination materials generated in the context of the project.

With respect to the technological resources, the FAIR4Health open community membership should provide new members access to:

  • The PPDDM models generated in the project.
  • The documents related to the HL7 FHIR Implementation Guidelines that are being developed for FAIR4Health, and the possibility to participate in their development.

Meanwhile, with respect to the dissemination materials, the FAIR4Health open community membership should provide new members:

  • "Priority" access: they will be primary contacts.
  • Invitations to the initiatives that arise from FAIR4Health in the RDA.
  • Invitations to workshops and other events, especially those organized by EFMI (European Federation for Medical Informatics).
  • Invitations to the final plenary of the project at the end of 2021 in Seville.
  • Newsletters providing periodic news about the status of the project.

By meeting these requirements, a membership to the FAIR4Health platform will be more attractive to users and will lay the foundation for more users to join and increase the value of the FAIR4Health project.

Strategies for attracting members

In the first instance, for the purpose of validation and feedback, as well as for underpinning the desired network effect, the FAIR4Health consortium will engage in targeted communication to select individuals who represent entities and organisations within the relevant stakeholder groups that FAIR4Health communicates with:

  • Researchers (FAIR data and Health).
  • Medical doctors and students.
  • Patient Associations.
  • RFOs and RPOs.
  • Biomedical Institutions – Hospitals.
  • General public.

We will seek to communicate specifically with individuals and organisations, which we have engaged previously and are aware of the FAIR4Health project and its objectives. We will also target umbrella organisations, which can cascade the FAIR4Health message to their partners and or members. We will also leverage the FAIR4Health partners extensive contact networks for this purpose.

Any communication about the Open Community Membership will highlight the message of the FAIR4Health project and will emphasize the security of the platform as well as the benefits it brings to FAIR management of health research data.

Impact of the FAIR4Health membership

This membership will have a major impact in the following aspects:

  • Improved trust in science through increased openness and quality of scientific research in Europe.
  • Stimulate the development of innovative services and products in Europe.
  • Better quality and more productive research and innovation, addressing societal challenges.
  • Contribution to European and global policies and the realisation of Horizon Europe’s objectives.
  • Building a knowledge base through dissemination materials generated in the context of the project:
    • FAIR4Health tools technical guidance.
    • FAIR4Health tools training.
    • Drive communication with the EC and EOSC with respect to FAIR compliance.

Commitments of FAIR4Health members

The FAIR4Health Open Community members will have the following commitments:

  • Promote and incentivise open data sharing.
  • Promote the FAIR principles.
  • Develop standardised FAIRification tools.
  • Promote FAIR certification mechanisms.
  • Contribute FAIR research digital objects (data, publications, software, tools, services, etc.) and practices.
  • Give insights into data citation in order to provide proper acknowledgement of researchers.
  • Share expertise with other members.