Building the service offer
The data collected during field surveys can be numerous and of different natures, such as answers to paper or online questionnaires, results of biological examinations, recordings from connected objects, physical activity sensors, environmental pollution indices, etc.
They provide an exceptional source of key information for public health research.
To consolidate the collection and processing of such data, and allow researchers to access optimal quality data while protecting the confidentiality of participants, France Cohorts provides support around various components:
- Information Systems
- Legal procedures,
- communication and promotion.
France Cohortes will also promote and implement the FAIR principles (easy to Find, Accessible, Interoperable and Reusable) across the entire data cycle, to promote sharing and openness, while respecting individual rights.
A deployment over 4 years
The implementation of the service offering is part of a rollout schedule spread out over 4 years:
France Cohortes is developing a high-performance, secure information system based on a certified health data hosting infrastructure (HDS).
The information system will allow cohorts to:
- Collect and manage their data,
- Bring the data into compliance with the General Data Protection Regulation (GDPR),
- Link data with administrative or environmental databases (for example),
- Use tools managing big data and artificial intelligence,
- Use data visualization tools,
- Work collaboratively with their partners,
- Access a support center and documentary resources.
France Cohortes will offer cohorts support in the data collection phase, using tools aimed at creating and managing questionnaires and measuring devices.
France Cohortes will offer support related to the management, documentation, analysis, processing and provision of data provided by the data managers and biostatisticians within the cohorts.
This support will be part of a FAIR approach linked to open data, intended to make research data easy to Find, Accessible, Interoperable and Reusable.
The infrastructure will also offer support to match data produced by the cohorts with external databases for example, from the National Health Data System (SNDS), and to ensure data quality.
- An SNDS service center is accessible to cohort researchers affiliated with Inserm. To access it, click here.
France Cohortes, in coordination with the Clinical Research Unit, the Data Protection Department, the Legal Affairs Department and the Inserm Regional Delegations, will support cohorts to:
- Bring their research projects into compliance,
- Set up partnership agreements.
Such support will also involve the provision of legal templates (Data Protection Impact Assessment (PIA), DTA, Material Transfer Agreement (MTA)…) and support for the drafting of documentation.
The process of accompanying and supporting cohorts involves offering training at several levels.
- Training in the use of the information system, IT and statistical tools,
- Training in the use of National Health Data System data (SNDS),
- FAIR data training.
France Cohorts will offer training associated with the various services offered, and will provide documentary resources and procedures.
Communication and promotion
France Cohorts will support cohorts in the implementation of communication strategies with all their contacts (volunteers, general public, scientific community). Such support can also take the form of website creation or support with service provider sourcing.