There is a clear need to increase FAIRness of human genomics and health-related data throughout Europe and beyond to support research, healthcare, and industry. The value of data to support precision medicine is only fully realized with large, diverse, interoperable datasets. Organizations, such as ELIXIR and GA4GH, and large, international projects, such as Beyond 1 Million Genomes (B1MG), have been set up to support and advance this goal. We are currently developing a maturity model (MM) for ELIXIR genomic data projects with a focus on the development and implementation of GA4GH standards to enhance health-related data access throughout Europe. Ultimately, this model will be expanded to support GA4GH’s global community to achieve the same goal.
This ELIXIR::GA4GH Strategic Partnership Maturity Model consists of three parts:
- The Model: A series of progressing levels, listing the GA4GH standards that are relevant to each. Each level of the model will include the GA4GH standards deployed and how that impacts the type, methods, and improvements of data access they have enabled.
- An Assessment Tool: A tool to help projects determine their level of advancement in providing access to sensitive human data using GA4GH standards.
- An Advancement Guide: Clear information on how to progress to the next maturity level. This will include training materials made available through collaboration with the ELIXIR Training Platform and the GA4GH Secretariat. Information about potential time, money, and other resources required will be clearly laid out.
Together these tools will provide the information needed to progress to the next level; ultimately aiding the ELIXIR network in expanding its sensitive human data access framework through the inclusion of GA4GH standards.