WeShare: a new digital infrastructure to accelerate research in human and social sciences and quality of life in oncology
Unicancer, in association with a multidisciplinary consortium, is creating a new digital infrastructure: WeShare. It will enable the acceleration of research in Human and Social Sciences in the field of Quality of Life in cancer and post-cancer. Coordinated scientifically by Gustave Roussy, the objective of the WeShare platform is to identify new levers to act on the impact of cancer and its treatment on patients’ quality of life.
WeShare is a unique, pioneering, patient-centred effort to equip research with innovative data production and collection tools to boost human and social science research in cancer.Dr Ines Vaz Luis, oncologist at Gustave Roussy and scientific coordinator of WeShare.
Taking into account the evolution of life expectancy of patients treated and monitored for cancer
The progress made in recent decades in the diagnosis, treatment and care of patients treated for cancer has improved both their life expectancy and their quality of life. The extension of patients’ life expectancy implies setting new priorities and developing new fields of research on the reduction of medical and psycho-social risks related to cancer and treatment. The aim is to facilitate the integration of human and social science research with conventional clinical oncology research.
WeShare: a shared, dynamic, integrated, patient-centred national research infrastructure for all cancer researchers.
As an innovative platform, WeShare will offer technological tools to address all research themes in the humanities and social sciences. The WeShare platform will also act as an incubator for innovative projects.
- A web platform with numerous functionalities: collection or integration of clinical and therapeutic data, collection of data filled in by patients or healthy volunteers (ePRO), online consent associated with electronic signature, randomisation, videoconferencing, audio capture and transcription, provision of multimedia documents, biometric data recording.
- Connectors to structured institutional data sources to simplify information collection, and eventually to the National Health Data System.
- A community animation solution to improve communication with patients and researchers, to better inform them about existing and upcoming studies and thus improve their engagement and the efficiency of the research.
- A tool for collecting, managing and making available the data collected during the various studies, in compliance with safety standards and regulations.
WeShare (ANR-21-ESRE-0017) has been selected for the 2020 Equipex call for projects by the ANR (French National Research Agency) under the “Investissements d’avenir” programme and has been awarded €11M in funding.
WeShare: diversity of technical and scientific skills
Unicancer with the scientific coordination of Dr Ines Vaz Luis has created a multidisciplinary consortium comprising :
- 3 FCCCs: Gustave Roussy (Villejuif), the François Baclesse Centre (Caen) and the Léon Bérard Centre (Lyon)
- the École Polytechnique
- the Seintinelles association
- the national Quality of Life and Cancer platform
A multidisciplinary approach was favoured with :
- Leading clinician-researchers in the field of cancer,
- Leaders in the humanities and social sciences (including psychologists, social and behavioural scientists, public health and health economists)
- and, of course, skilled staff dedicated to the development and maintenance of the platform
All partners have expertise in the development of technological equipment and have developed, in recent years, patient-oriented web applications or platforms, particularly focused on ePRO collection (e.g. CANTO, CAPRI, CLIC’CONSULT), connectors (e.g. ESMÉ) or community engagement networks (e.g. Seintinelles)
The WeShare pilot model will have two segments:
- Development, over 6 years, with an implementation and interconnection phase and then an expansion phase with the incorporation of new functionalities according to the specific needs of pilot projects and for future projects
- Consolidation, associated with full operation, over 2 years
A significant number of high-priority projects have already been pre-identified, sponsored by partners and funded, and will be piloted in the WeShare incubator in the near future. It will then be open to national research actors, fully playing its role as a research incubator for future innovative projects.