The European Commission (EC) has released an expert report on Findable, Accessible, Interoperable and Reusable (FAIR) data during the COVID-19 response. The report, Maximising investments in health research: FAIR data for a coordinated COVID-19 response, summarises the results of three EC workshops held in late 2021.
The workshops attracted over 300 participants from data generation consortia, infrastructures facilitating data availability and stakeholders using data to coordinate the COVID-19 response in Europe. Many participants from across ELIXIR were involved in attending workshops, providing feedback, delivering talks and chairing sessions.
The aim of the workshops was to identify priorities for action on improving the FAIRness of data and to propose recommendations for European Union (EU)-funded projects and infrastructures for health data reuse. The report identified the two greatest challenges in this area to be the interoperability of participant-level data and descriptive metadata, and the movement from retrospective harmonisation to data capture standards (FAIR by design).
FAIR [is] a continuum, not a binary. The FAIR principles describe the “what” but not the “how.” The concept of FAIR data will evolve over time and vary across use cases. Page 43
Six individuals from ELIXIR gave presentations in the workshop sessions: Susanna-Assunta Sansone (ELIXIR UK, FAIRsharing and FAIR principles), Katja Kivinen and Dylan Spalding (ELIXIR Finland, Beyond 1 Million Genomes and ELIXIR-CONVERGE/Global Alliance for Genomics and Health respectively), Guy Cochrane and Alfonso Valencia (the COVID Portal from the perspective of the EMBL-EBI and ELIXIR Spain), Rob Hooft (ELIXIR Netherlands, Data Stewardship Wizard), and ELIXIR Director Niklas Blomberg chaired two sessions.
An important aspect of governance is to be clear on who is making decisions, how are these individuals appointed, on what basis are they taking decisions and how and to which body can concerns around decision-making be raised? [We need] transparency and trust: from data subjects, the researchers/organisations collecting and organising the data, the funders and the community at large. Niklas Blomberg, ELIXIR - Workshop 1
ELIXIR projects and resources featured heavily in the report, including the FAIRplus project and associated Cookbook, the training resource TESS, and the pathogen data project BY-COVID. A full list of ELIXIR resources and projects mentioned is listed in Further Information.
A pre-meeting survey was completed to gather the priorities of meeting participants. The top priorities were:
- Clinical data connected to human and pathogen genomic data
- Standardised metadata
- A consistent interpretation of General Data Protection Regulation (GDPR)
- Interoperable Electronic Medical Records (EMRs) and observational research data
When FAIR is incorporated into data stewardship throughout the project lifecycle, from research planning to data management and sharing, FAIR produces high returns for the project itself rather than representing a cost position that pays only when considering science as a whole. FAIR by design delivers for funders, Open Science, and the groups that generate the data. Page 45
The survey identified the biggest barriers to interoperability as:
- Lack of common data collection or sharing practices/systems
- Legal barriers associated with GDPR and related national laws
- Lack of common data or metadata standards
The implementation of FAIR requires significant resource and sustainability planning and will need to evolve to include systematic budgeting for FAIR in EU-funded research and infrastructure projects and by the EC itself. Page 45
Rethinking the rewards system
The report recommends that the EU and other stakeholders lobby policymakers, research funders, publishers, platforms and registries at every step in the research cycle to enable, incentivize or mandate FAIR data stewardship practices.
Making data FAIR requires resources, training, policies, and incentives. To enable FAIR by design and timely availability of quality data, rewards systems need to change. Data generation is privileged over data reuse through several well-entrenched mechanisms, including funding schemes and preferential publication of papers that use novel datasets. Page 53
There is a public health imperative to maximise the utility of the wide range of data types collected through the EU-funded COVID-19 projects. This can only be achieved by coordinated action across all member states, driven by domain level experts. With a strong membership network and many years’ experience coordinating data management throughout Europe, ELIXIR is well placed to meet this challenge.
Ultimately, ensuring data is findable, accessible, interoperable and reusable will fast track the development and evaluation of novel diagnostics, vaccines, and treatments for COVID-19 and future pandemics.
The interoperability of routine care and health research-related data are global issues that translate directly into lives lost through missed opportunities to improve prevention, diagnosis, and treatment. Page 51