Doctolib set to use some patient data for AI research - how to opt out

Doctolib, France’s main online medical appointment booking system, is set to use patient data in two artificial intelligence (AI) research projects - unless users opt out. 

The platform does not require patient consent to use the personal data of its 50 million users as this research is considered to be in the public interest, and compliant with legal framework set out by the CNIL (Commission nationale de l’informatique et des libertés). 

Both research projects are set to begin this month, with the first project aiming to “investigate how AI tools can help to better anticipate certain risks based on medical history, in order to better organise and coordinate care pathways,” said Doctolib.

The second project, which will aim to “investigate how to obtain reliable measurements of the confidence levels of generative [AI] models used in the medical field, with a view to enhancing user safety.”

Doctolib assures it does not sell or share personal data for commercial purposes.

The research will be conducted in collaboration with Inria (the French National Institute for Research in Digital Science and Technology), Inserm (the French National Institute of Health and Medical Research) and Paris-Cité University. 

What personal data will be used?

“Only the data strictly necessary for the purpose of the study is used, and we ensure that no patient or healthcare professional can be directly identified,” stated Doctolib. 

Patients will be allocated pseudonyms which will replace their real names, however this does not guarantee anonymity as identities could still be traced using indirect methods. 

The research projects may use data entered by a doctor into their Doctolib software, both via writing and voice dictation, such as medical history, medical records, diagnoses, treatment progress, documents and images.

Information entered by users prior to consultations such as questionnaire responses, referral letters, and prescriptions may also be used, as well as health data entered in the Santé section of your Doctolib account.

The Ligue des droits de l'Homme (LDH), a French human rights organisation, says this data “must be protected.”

“Doctolib wants to use the health data of its 60 million patients to set up an AI laboratory. The #LDH warns that this data, which is among the most sensitive, must be protected. We are calling on patients to refuse the use of their data,” said the League in a post on social media. 

How can I opt out?

If you would prefer that your data is not used in the research project, you can complete a dedicated opt-out form on the Doctolib website.

“You may withdraw your consent to the reuse of your data, as well as the data of your relatives, by completing this form for each person on whose behalf you are objecting,” said Doctolib.

The health platform also states that submitting this form does not impact the services offered to Doctolib users.

To exercise your other rights such as data rectification, restriction and deletion, you can send an email to: contact.dataprivacy@doctolib.com.

You can also use this email address for any questions about the use of your data.

Doctolib has also created a ‘transparency’ webpage that details its research projects and features data-related FAQs. Access this webpage here. 

The French government has already launched a programme to cut its reliance on Microsoft for national health data driven by concerns over digital sovereignty, with Doctolib so far resisting calls to relocate its data from Amazon Web Services (US) to a European provider.