This is the nineteenth in the series of short statements from candidates in the coming CODATA Elections at the General Assembly to be held on 17-18 October 2025. Lauren Maxwell is a candidate for the CODATA Executive Committee as an Ordinary Member. He was nominated by the Research Data Alliance.
My name is Lauren Maxwell, and I am an epidemiologist and mixed methods researcher. I am very thankful to have been nominated alongside such a fantastic group of data reuse advocates and innovators.
My work focuses on understanding and enabling data and sample reuse in the research response to emerging pathogens through investments in training and tooling for interoperability of data and metadata, understanding and addressing ethical, legal, social, and institutional (ELSI) barriers to data and sample reuse, and building better systems metadata to improve implementation decisions and enable federated, mulitmodal data reuse for health research and care data and across health data commons.
I lead the FAIR and equitable data and sample reuse research group at Universitätsklinikum Heidelberg in Germany and work packages or tasks in the EU-funded CONTAGIO, CoMeCT and BE READY Pandemic Preparedness Consortia on behalf of Universitätsklinikum Heidelberg andEcraid Foundation in the Netherlands. I serve as an Ethics Review Committee member for the Human Cell Atlas and as a member of the EOSC Health Data Interoperability Task Force. During the COVID-19 pandemic, I led a series of workshops on behalf of the European Commission to build FAIR data for COVID-19 and supported work by the GloPID-R and CERCLE data reuse working groups. I have been engaged with CODATA since 2020, when I initiated the CODATA Health Data Working Group. I have continued that work with RDA as the co-chair of the jointCODATA-RDA Health Data Commons Working Group, where we are working to extend the Global Open Research Commons metadata model into the sensitive biomedical data domain to build the metadata needed to support a living map of implementation decisions across health data commons and between health data and commons in other domains. I also co-chair theTechnical Repository Service Providers Working Group with RDA where we are working to address barriers to repository certification to help researchers make sense of the rapidly evolving and consequential research data repository landscape. I was a co-author of the CODATA Cross Domain Interoperability Framework (CDIF) and am committed to supporting its implementation in the biomedical data space.
I am excited to have been nominated to the CODATA Executive Committee because of the need to link CODATA’s actions to support federated, cross-domain reuse of multimodal data and to build the linkages between humans, data, and humans and data to improvements in the pandemic preparedness landscape. We don’t have time to clean up our act during a pandemic. We need to do that beforehand, and we need to learn from domains outside of health, such as oceans, biodiversity, deep earth, and chemistry, as well as within health, including cancer, cardiology, rare diseases, and brain health, to get there.
We need to improve data and sample reuse for more effective detection and response to epidemics. COVID-19 was both a failure and a triumph of data reuse. Fear around the consequences of data sharing was a key cause of the epidemic. Rapid global sharing of viral sequence data was a key enabler of resolving the pandemic. When we look at the production of research evidence in the wake of COVID-19, we can see how prior investments in the interoperability of health system data led to rapid, high-quality evidence production. My goal is to work with CODATA to produce cross-domain, cross-infrastructure metadata to demonstrate how different approaches to data reuse enable or prevent value production for the different stakeholders in the funding-to-impact data lifecycle so we can drive informed data policies and investments for epidemic detection and response.
We need data sovereignty and value-driven approaches to incentivising investment in data quality and reuse. With full interoperability and high-quality data and metadata, including a functional PID system, we can reuse data where it sits through federated learning. As a privacy-by-design approach, federated data reuse empowers data holders by placing decision-making power in their hands, addressing some ELSI barriers to data reuse, and reducing both time and carbon footprint compared to centralised approaches. Data reuse has to drive value for data producers to be sustainable. We need to support efforts to build end-to-end value chains that enable local communities and nations to derive value from the data they produce to support federated reuse of high-quality, interoperable data at scale. My goal is to use the CODATA network to support efforts to connect individuals, data, and infrastructure investments to build transformative value for data producers through data interoperability and quality.
We need federated, actionable metadata to demonstrate and improve implementation decisions by the digital public infrastructures that support data reuse. Understanding how infrastructures and approaches, like interoperability-as-infrastructure, drive costs, cost savings, benefits and harms is central for improving cross-domain data reuse. I want to work with the CODATA community to build the actionable, transparent, trusted metadata we need to create a learning system for understanding how data and sample reuse translates into impact and for whom to inform strategies for building equity and inclusion in data reuse.
We need cross-domain data reuse to address our shared, global challenges. Human health data is linked to data from every other domain we can think of. Barriers to reusing climate dataprevent us from optimising malaria treatment and prevention efforts, a lack of data on plant health leads to missed opportunities to address the effects of aflatoxin exposure in agricultural workers. I hope to support CDIF’s implementation as a building block for Whole of (Global) Society systems metadata-driven approaches to understanding and addressing the cross-domain challenges that drive human health, including climate change, environmental exposures, and One Health.
Lastly, we need actionable tooling and training to support interoperability and inclusive, equitable approaches to biomedical and cross-domain data and sample reuse. I am committed to supporting CODATA’s efforts to train the next generation of data production, management, policymaking, and data governance experts and to develop the tooling they need to make their jobs easier.