How People Understand Long Covid: Stories from an Online Health Community

Declarations. Ethics approval and consent to participate: Not applicable: The data analysed in this research was collected from a community online and open access called #ApresJ20. Considering the current national regulations, our study does not require ethical approval from an ethics committee nor consent for participation because the data used are freely accessible online. Our research is non-interventional and therefore not subject to the rules of the Jardé law (law n° 2012–300, March 5, 2012) on biomedical research conducted in France. This category of research, based on the collection of anonymised and freely accessible accounts of individual experience of long covid, does not require written consent. Concerning the protection of personal data, in the European Union and in France, the General Data Protection Regulation (GDPR) (Regulation 2016/679 of the European Parliament and of the Council of 27 April 2016) came into force on 25 May 2018. The French Data Protection Act (Law No. 78–17 of January 6, 1978 on information technology, files and freedoms) has been adapted accordingly by the Personal Data Protection Act currently being enacted. These two texts now form the basis of the new regulation on personal data protection. The GDPR defines personal data as “any information relating to an identified or identifiable natural person”, i.e. a natural person who can be identified, directly or indirectly. In practice, this may include identification data such as surname, first name, address or telephone number, information relating to the patient’s personal life (e.g. number of children), social security coverage (e.g. compulsory health insurance, supplementary health insurance, etc.) and, above all, information relating to the patient’s health (prescriptions, care, etc.), and any professionals involved in his or her care. In our study, we do not use any of these data because they are only testimonies on the experience of long covid and are freely available on the page https://www.apresj20.fr/temoignagesof the “après J 20” association website. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.