The COVID-19 pandemic has intensified efforts to soften the barriers to bringing together multi-national, multi-institutional health data for healthcare research.
These barriers include variations in governance and regulatory frameworks, data recording standards and data quality, and interoperability challenges between systems. COVID-19 has accelerated a movement within the research and scientific community to move beyond the traditional, siloed approaches to health data research.
Towards the end of 2020, the French-based Health Data Hub; an organisation created in 2019 to bring together data, tools and platforms to improve citizen health, conducted a benchmarking study of similar organisations. The aim of the study is to share knowledge and best practice, improve standards and foster future collaboration for public health improvements across Europe. This work forms part of the European Commission initiative European Health Data Space that promotes the exchange of and access to Electronic Health Records for safe research.
The benchmarking exercise included 17 organisations from 11 different countries. SAIL Databank featured prominently alongside 10 of the other organisations responsible for ‘hosting and granting access to health data’. Comparisons were drawn across operational, financial and public engagement activities.
Emphasised along the theme of communication, SAIL Databank was highlighted for its online guidance and informational resources that includes a metadata catalogue, publications policy, user experience comments and information aimed at the general public whose data is entrusted within SAIL’s secure environment.
Benchmarked against the public involvement criteria, attention was also drawn to SAIL Databank’s dedicated public engagement expertise and personnel and their efforts towards public transparency, the inclusion of public voices in SAIL’s data access governance and the establishment of a ‘consumer panel’ to aid the development of research ideas.
Finally, recognised as one of the ‘game-changers’ during the COVID-19 response, SAIL Databank was cited for its work around managing COVID-19 data; making it quickly available for approved research and its use of an effective metadata catalogue.
It’s hoped that from this benchmarking analysis, European and international best-practice can be leveraged to build a health data ecosystem that benefits citizens globally.
The full report of the benchmark analysis is available here – https://www.health-data-hub.fr/actualites/benchmark-international
BY CHRIS ROBERTS, SWANSEA UNIVERSITY