Enhancing access to research data during crises: lessons learned from the COVID-19 pandemic – policy recommendations shared at an OECD Forum on 23 April

Névine Zariffa, Scientific Lead for ICODA’s Driver Project focusing on the safety and efficacy of COVID-19 treatments, presented at a Forum organised by the OECD on 23 April on “Enhancing access to research data during crises:  lessons learned from the COVID-19 pandemic”.  Below are highlights of the key policy recommendations she made in response to the session topic “What are the main challenges for access to research data in these fields in relation to COVID-19?  How are these challenges being addressed?  What is needed to be better prepared for future crises?  What are the implications for science policy?”

Sharing health data appropriately benefits all stakeholders, from researchers who can access data to answer relevant and important research questions, funders who can increase the impact of their grants, policy makers who need rapid access to insights from data to inform their decisions and ultimately the public and patient communities to build trust in how their data are being used and to drive the insights that ensure optimal decisions relating to health and treatments.  However, despite these obvious benefits, significant barriers remain to ensuring that research data are made available in a timely and impactful way.

Policies involving multiple stakeholders – funders, governments, research networks and individual researchers – need to be developed to achieve a successful COVID-19 data sharing model.  Key recommendations include:

• A commitment to data sharing within a specific timeframe as an explicit requirement for funding, making data sharing with a repository such as ICODA conditional on receipt of grants from funders
• 1 – 2% of total grant added to grants for data sharing, similar to the funding currently committed to publishing the research outputs, removing resourcing issues that may constrain researchers from sharing data
• Data Sets and Software repositories link directly to ORCID to help ensure researchers are clearly linked to their research and get due recognition for their contributions
• Mandates for accountability to the public and patients, to build trust and ensure transparency
• Adoption of standards and common data definitions – both to enable comparability of data but also to generate summary-level data critical to ease of data discovery and access and minimizing privacy concerns
• Creation of an internationally recognized standard for data quality management – to ensure that data sharing platforms have appropriate credentials

ICODA is helping make appropriate data sharing easier for researchers through the ICODA Gateway to facilitate data discovery, strict governance processes to ensure that only accredited researchers can access and work with data, technical expertise to enable data curation and comparability.  By combining our work with the policy recommendations set out above, our ability to collectively harness the power of data to generate insights to benefit the global community will be greatly accelerated.

Please visit the OECD’s website to watch a recording of this workshop.