HEALTH STUDIES PORTAL
Update of the Epidemiology France Portal
More than ever, the Covid-19 health crisis highlights the necessity to increase the visibility of public health studies, the collaboration between teams, and the reuse of health data for research purposes. However, unlike clinical trials, the declaration of observational studies is encouraged but is not mandatory.
For several years, we at IReSP have provided the research community with tools to support research. In June 2020, the French Ministry of Higher Education, Research and Innovation (MESRI) tasked us, in collaboration with the Aviesan Public Health ITMO and the Inserm Public Health Theme-Based Institute, with identifying the individual health databases used for Covid-19 studies in France.
At the end of 2020, the Epidemiology France Portal was modified to enable the input of these studies and to offer a new version to its users, which can be accessed via the following link:
This was followed by communication campaigns, which are still ongoing, to encourage leaders of Covid-19-related studies to fill out records concerning their studies and databases. The four main areas of these records are General information, Main features, Data collection, Promotion and Access.
The portal continues to gain visibility and has had record traffic since September 2020, with 2,500 – 5,000 connections per month, including 35 to 40% from outside France.
Towards a new health studies portal: the French Studies in Human Health (FReSH) portal
To encourage a more open form of science, MESRI has identified measures aimed at guiding the scientific community of the biology and health field towards a culture and practices with a greater emphasis on sharing and openness. MESRI has tasked us with reflecting on the creation of a descriptive catalogue of individual health studies and their data (without making the data accessible), beyond the realm of Covid-19. The main objectives of this catalogue are to improve:
- The visibility of individual French health studies and their findings (with priority to observational studies)
- Collaboration between teams
- The reuse of health data collected for research purposes
In order to ascertain the added value of this new tool and evaluate the added utility of the project’s various characteristics, we at IReSP conducted an opportunity study in conjunction with the Aviesan Public Health ITMO and the Inserm Public Health Theme-Based Institute. This involved setting up and facilitating a Scientific Orientation Committee (SOC) which met five times between September 2020 and March 2021. The results of the study together with recommendations for the continuation of the project were presented to MESRI in mid-January 2021, and the report was issued to the players involved. The study was then validated by MESRI.
The diagram below summarises the main recommendations of the report, particularly the main envisaged changes to the Epidemiology France Portal.
In April 2021, a page devoted to the project to create the health studies portal and the constitution of the team was published on the Ouvrir la Science website:
The next steps will be to conduct a feasibility study and workshops on how the portal will mainly be used in order to best ascertain the technical and functional expectations of the target users. The expertise of the Information Systems Department at Inserm will be mobilised for the study.