Vivre-Covid19 is France Assos Santé’s first major survey. Launched in partnership with the Health Data Hub in the midst of the March 2020 lockdown, the study went live in just six weeks, thanks to the prompt response of the Ethics Committee that was consulted. With the aim of
developing and conducting this study in a spirit of openness, sharing, and transparency, the two partners developed an ethical framework applicable to this study. This new partnership between France Assos Santé and the Health Data Hub—which now includes Santé publique France and Sanoïa—is part of the implementation of this framework: health system user associations are thus committed to making data available for research.

“VivreCovid19 demonstrates the capacity of the nonprofit sector to quickly adopt best practices and standards of quality, safety, and methodology in promoting epidemiological studies—all in the interest of patient protection. We support France Assos
Santé in becoming a true player in health data; in knowing how to collect data and retain control over it while sharing it to better leverage its value.” Stéphanie Combes, Director of the Health Data Hub.

With the Vivre-Covid19 study, this marks the first time a collective of associations has opened its data—collected in an organized manner and according to procedures ensuring potential reuse—to a public operator for analysis. This initiative is part of a broader effort to enable the collective use of data. Through this momentum, the nonprofit sector is leading the way in data sharing and openness for research.

“We, as associations, have long demanded access to study protocols and data out of a concern for transparency, but also to be active participants. Today, we are setting the example with Vivre-Covid19 by making our protocol freely available and sharing our data so that it can be better utilized by those with the expertise to do so. Nevertheless, we remain active participants, particularly because we have established a governance structure that allows us to monitor the analyses and propose research directions.” Gérard Raymond, president of France Assos Santé.

For its first experience as a sponsor of an inter-association study, France Assos Santé relied on Sanoïa, a clinical research company, to distribute the study in a digital format. It will liaise with Santé publique France to make the data available; for its part, Santé publique France will analyze the data under the supervision of France Assos Santé and with the assistance of the Health Data Hub.

Given the large volume of data and the number of study participants, more in-depth statistics are both relevant and necessary, a task Santé publique France will undertake. For the agency, this is an excellent opportunity to fulfill one of the missions of its Directorate of Noncommunicable Diseases and Injuries, which aims to document the health status of people with chronic diseases in the context of the COVID-19 pandemic.

“The data from the Vivre-Covid19 survey will allow us to address and better understand the difficulties (experiences, anxiety, forgoing care, etc.) faced by patients. The longitudinal nature of the data is a valuable asset that will provide new insights to complement analyses of the impact of the Covid-19 crisis on patients’ health and quality of life. “This collaboration also reflects the agency’s commitment to sharing its expertise with civil society—in this case, with people living with chronic conditions—to better inform decision-makers and guide health policies that serve patients,” explains Laëtitia Huiart, Scientific Director of Santé publique France.

Partners

About France Assos Santé

France Assos Santé: Founded in March 2017, France Assos Santé is the leading organization that speaks for and defends the interests of patients and healthcare users. It brings together nearly a hundred national associations working to defend patients’ rights, ensure access to care for all, and improve the quality of the healthcare system. It plays an active role in public debate and presents concrete proposals to institutional and political stakeholders to improve the healthcare system. France Assos Santé advocates for the involvement of patient and healthcare user associations, as well as citizens at large, to ensure their voices are heard and to participate in decisions regarding the use of their data.

Press contact: communication@france-assos-sante.org 07 56 34 10 86

About the Health Data Hub

The Health Data Hub is a public interest group established by the Law of July 24, 2019, on the organization and transformation of the healthcare system. It brings together 56 stakeholders, the vast majority of whom are public entities (CNAM, CNRS, France Assos Santé, etc.), and implements the major strategic guidelines for the National Health Data System established by the government, particularly the Ministry of Solidarity and Health. It is a service designed for the health ecosystem, data collectors, public interest project leaders, and civil society. In this regard, it promotes innovation in health and the accessibility of data and knowledge through, among other things, unifying events such as data challenges and calls for projects.

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contact: presse@health-data-hub.fr - 06 95 66 26 52

About Santé publique France

Santé publique France addresses the need for a center of reference and expertise in public health in France. Based on the continuum between knowledge and intervention, our mission is to improve and protect the health of the population. Our work addresses major public health challenges over the long term, in the areas of protection against threats (including infectious risks, environmental risks, etc.) on the one hand, and health improvement (health determinants, prevention, health promotion, and reducing the burden of chronic diseases, social and regional inequalities, etc.) on the other. Santé Publique France is a public institution under the supervision of the Ministry of Health and Prevention.

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contact: presse@santepubliquefrance.fr

About Sanoïa

Sanoïa is the first French CRO (Clinical Research Organization) that is natively digital and focused on the patient experience (PROMs | PREMs). Founded in 2010, it specializes in real-world studies and projects involving more than 10,000 patients in France and Europe. Its services are built on a secure and innovative digital platform, and its teams
possess unique expertise in hybrid e-cohorts with SNDS matching and the integration of connected devices. Sanoïa benefits from the PariSanté Campus startup support program and the backing of Bpifrance.

Press contact: presse@sanoia.com