Since 2017, Emilie Pain has been working as a data scientist and DPO at Carenity. In this interview, she talks about her career path, her missions, the importance of data protection at Carenity and the PatientLive platform she manages.

Hello Emilie, what is your background in terms of studies and work experience?

Hello! I am an engineer in biology with a degree from the Institut Supérieur des BioSciences de Paris (ISBS, Créteil, France). Before joining Carenity, I worked as an assistant researcher at the Institut de Biologie Integrative de la Cellule (I2BC, CRNS, Gif-sur-Yvette, France) and the Centre for Regenerative Medicine in Edinburgh (CRM, Edinburgh, Scotland).

Why did you join Carenity? 

I joined Carenity in 2017, with the aim of contributing to medical progress and the fight against the loneliness that is often linked with illness. As part of Carenity, I have the opportunity to share information, in a fair and accurate way, with various health actors.  

What is your role at Carenity today? 

My role, as a Senior Data Scientist, is to support our clients in conducting real-life patient studies, to participate in the writing and publication of scientific articles, and to manage PatientLive platform, which allows our clients to have quick access to patients through polls composed of 1 to 5 questions. As Data Protection Officer (DPO), I also oversee Carenity’s internal implementation of General Data Protection Regulation (GDPR) practices and accompany our clients in the implementation of GDPR for our real-life patient studies.

About your role as DPO, what does this mean in the day-to-day? What is your job role and projects?

Every day, a new real-life patient study is launched, I accompany our clients in ensuring that GDPR is properly implemented for our study (I help them conduct privacy impact assessment, answer patients’ questions about their rights, etc.).

I am also involved in the set-up of new internal projects such as certain evolutions of the platform or of our survey tool, in order to guarantee that members’ data is protected, that we do not collect data in an unjustified way, etc.

Who has access to member data?

Not all members of the Carenity team have access to all member data. For example, the Community Managers and I have access to data that allows members to use the platform to help them if necessary. On the other hand, the team responsible for analyzing the survey results only has access to the survey responses, and so on.

What data is shared with third parties?  Under what conditions?

In general, we do not share any personal data with third parties. 

In particular, when we share survey results, it is in an aggregate form, meaning that it is impossible to identify a patient individually. When we need to transmit a patient’s responses in a non-aggregated way (a series of responses that are known to have been provided by a single person), it is always explicitly stated to patients on the introductory page where we present the survey, and specific measures are implemented if personal data is shared outside the European Union (patient consent, contractual clauses).

As the product owner of the PatientLive platform, what data can customers quickly access? And for what purposes? 

PatientLive allows our clients to quickly gather patient insights to help them make better decisions. It helps them test concepts of services/patient tools, test or validate messages of future communication campaigns aimed at patients, refine the design of their patients studies, and for any other question relative to their patient issues.

What do you like most about Carenity? 

I like having the opportunity to convey the opinions and challenges of members as accurately as possible to our partners in order to constantly improve the services provided to patients.