Call for legal data harmonization to support vital research
As a very timely response to the European Commission’s communication on the importance of the European Health Data Space, authors from several EEA member states came together to discuss the pros and cons of record linkage as a vital key player for the COVID-19 syndemic. The result was a call for legal harmonization to overcome research challenges, and, to initiate discussions across the scientific community, they published a commentary in the International Journal of Population Data Science (IJPDS).
During the COVID-19 pandemic, containment measures and required isolation resulted in sedentary behaviours and stressful responses. For people with chronic diseases, this combination of long-term illness, mental health challenges and socioeconomic circumstances served to exacerbate their already complex conditions, giving COVID-19 a syndemic dimension.
In ‘Record linkage as a vital key player for the COVID-19 syndemic – The call for legal harmonization to overcome research challenges’ the authors discuss how linking routinely collected data and data collected through observational population-based cohorts can contribute to advanced knowledge on the association between COVID-19, chronic diseases and social indicators.
This type of record linkage serves as a multifaceted tool and may ultimately enable defining and optimizing integrated strategies. The World Health Organization advocates “Science, Solutions and Solidarity”, and such strategies could create multilevel public health measures that would foster solidarity on health in all policies if ethical and legal barriers under data protection and privacy can be overcome.
Legal discrepancies have been detrimental to research in member states, including those that have already established a margin for research for the common good without explicit consent. The authors propose a framework which summarises the main points of contention and demonstrates the role of record linkage as a trailblazing key player in advancing research, and they call for legal harmonization.
The authors added, “We are calling for further harmonization of data protection requirements for scientific research activities in the EU/EEA, with a particular focus on health-related research.”
Julia Nadine Doetsch, EPIUnit – Instituto de Saúde Pública, Universidade do Porto, on behalf of all co-authors
Doetsch, J. N., Kajantie, E., Dias, V., Indredavik, M. S., Devold, R. K., Teixeira, R., Reittu, J. and Barros, H. (2023) “Record linkage as a vital key player for the COVID-19 syndemic -- The call for legal harmonization to overcome research challenges”, International Journal of Population Data Science, 8(1). doi: 10.23889/ijpds.v8i1.2131.