Privacy Policy

The Healthy Data project (coordinated by Sciensano, Belgium; Health Data Hub, France and NHS Confederation, UK) respects your privacy and handles your personal data in a responsible and safe manner. This privacy statement applies to the personal data we collect in order to carry out Healthy Data project successfully. In this privacy statement we will outline the various aspects of our privacy policy.

The Healthy Data project reserves the right to change the privacy statement at any time. In this case, we will inform you beforehand.

Table of content

How do we collect your data and how do we process it? 

Anyone can view the content on the online platform and take part in the online test. If you want to submit a proposal or an idea, post a comment or support published ideas, you will need to create an account.

You can create an account as an individual or as an organisation. Are you registering as a group or an association? Then we assume that you speak on behalf of that group or association.

Below we will explain the different situations in which we collect data from you, and what we do with that data and why.

If you post a public contribution

To be able to post a public contribution such as an idea, proposal, photo or comment on the platform, you first need to create an account. Therefore you have to provide us with the following information: your first name, your last name, your email address, your age (range), your gender, your level of education and your country of location. This information is recorded and linked to your profile.

Once you have created your account, you will receive an email to confirm your registration. You may also receive an email in which we ask you to provide more information about your submitted idea. If you post a contribution, we will notify you by email whether it has been published or not.

Your contribution, idea or comment will appear on the platform along with your first name and the first letter of your last name (e.g. Peter P). If you register as an organisation, the full name of your organisation will also appear (e.g. Peter P from The Football Team).

If you subscribe to the newsletter

If you subscribe to the newsletter, we will keep you informed about the next stages of the project. In every email you will have the chance to opt-out of receiving those newsletters. We will send you monthly emails to:keep you informed about health data reuse and the European Health Data Space;

  • keep you informed about Healthy Data (e.g. progress, developments, results);
  • invite you to events related to Healthy Data;
  • invite you to take part in projects related to Healthy Data.

If you take part in the online test

If you participate solely in the online test, we will not ask you to provide any personal details.

Shared data via connected social media

If you want to post on social media from the platform, you first have to log in to the relevant social network. That social network is then responsible for the data you have to provide. The Healthy Data project only records that you have shared the contribution and through which social network.

Under no circumstances can the Healthy Data project be held responsible for the data that social network providers such as Google, Facebook or Twitter collect about you.

Shared data through the use of the platform

When you use the platform, our servers automatically record data that your web browser sends us when you visit a website (“Log Data”). This information includes, for example, the browser you are using, your IP address and the search terms used.

If you interact with a contribution on the platform, we have access to data that identifies the reach and scope of the contribution (e.g., clicks, likes, shares, etc.).

Like almost all websites, we also use cookies and similar technology to improve our website and our services. We use both “session cookies”, which are deleted as soon as you leave our website, and “persistent cookies”, which are not automatically deleted. You can delete these cookies yourself via your browser settings. 

We use functional cookies to guarantee the proper functioning of the platform. We do not use analytical cookies

If you request help and support

If you contact us with a question or a comment, you are largely in control of what information we receive from you. For example, you can send us an email in which you also include your Twitter account, professional address or a photo.

Personal data of children 

If children or adolescents under the age of 15 want to participate in Healthy Data, they can do so indirectly through the registration of a person who has the right to exercise parental authority over the child or adolescent in question. If it becomes clear that we have collected personal data which has been provided without parental consent, we will remove the personal data from our files as soon as possible.

Why do we collect your personal data?

  • Name and surname (for registering on the website): We are asking you your name and surname to guarantee the quality of the debate and keep it transparent and fair. This information will not be used for any other purpose. If you are not comfortable with providing your real name, you can still use a (respectful) pseudonym.
  • Email addresses : we are asking you this to ensure that you are a real person (when you register on the website) and to send you our monthly newsletter if you agreed to
  • Country of location, gender, age range and education level: This data will help the organizers to refine their analysis of the contributions, which will help in the redaction of recommendations on how to involve citizens in the management of their health data. 

We also may use your personal data for some or all of the following reasons:

  • to publish your public contributions on the platform and to help you to continue to share them;
  • to keep you informed about the Healthy Data project (if you want to be kept informed);
  • to process your contribution anonymously for the follow-up of the project, to prepare a project report or to perform aggregated analyses;
  • to carry out random user research (in an anonymous and aggregated way), so that we can use your feedback to improve our methods and tools;
  • to take the necessary support actions to ensure the functioning and maintenance of your account and/or of the platform and the website;
  • to improve the website: to improve and personalise your experience on our websites by using information such as login data, technical computer data and/or information about your previous use of the website.

How will your contributions and anonymised version of your data be used? 

Personal data will be processed based on your informed consent.

The anonymised and aggregated version of the personal data, as well as the answers which you provided during the interactive test and on the ideation platform will be used for the following purposes :

  • For all respondents, the creation of recommendations on citizens' sensitisation to and engagement with health data secondary use and sharing in Europe. This report will be delivered to the European Commission to feed its reflexion on the implementation of the future European Health Data Space. It will also be made publicly available on the website of the Joint Action "Towards a European Health Data Space", which aims to facilitate the use of health data for improving health, care and services through research and planning in the future European Health Data Space.
  • For the respondents who have indicated to live in Belgium exclusively, the creation of a roadmap for the construction of a Belgian national health data platform, developed by the AHEAD project.
  • For all respondents, an anonymised and aggregated version of personal data and of the answers provided during the test and on the ideation platform might be used, for a period of 5 years after the end of the e-consultation, in future scientific and sociological study conducted by the organizers of the Healthy Data e-consultation, that is Sciensano, the NHS confederation and the Health Data Hub. Beyond that period, all data will be deleted.

Do we pass on your personal details?

We will not pass on your personal data to third parties, unless we receive your specific, explicit permission to do so. In some cases, however, the law requires us to disclose your information to the competent authorities.

We secure the data in a responsible manner, taking into account current practices and expectations. However, no system or platform is infallible. If you suspect that your information is being misused, please contact us immediately by sending an email to

How long do we store your data? 

The Healthy Data project does not store your personal data any longer than necessary, taking into account the need to answer questions and solve problems, to improve services and offer new services, and to comply with legal requirements. We keep the data until 5 years after the end of the Healthy Data project, at the latest.

What are your rights? 

  • You are not obliged to provide personal data. Failure to provide personal data implicates that the Healthy Data team is not able to fulfill the purposes mentioned in ‘Why do we collect your data’.
  • You can have your personal data corrected or supplemented with additional information. You can also exercise this right yourself via your profile page (My Profile).
  • You can request to access your personal details.
  • Your right to data portability: you can receive your personal data in a structured, commonly used and machine-readable format.
  • Your right to restrict the processing of your data: you have the right to request that the processing of your personal data be restricted in future.
  • You have the right to revoke consent given (e.g. to recieve the newsletter), without affecting the lawfulness of processing based on consent before its withdrawal.
  • You always have the right to have your data deleted. 
  • You have the right to lodge a complaint with a supervisory authority. The contact details of the Belgian supervisory authority can be found below in the section ‘Contact us’.


Contact us

Sciensano, Belgium; Health Data Hub, France and NHS Confederation, UK are joint controllers of the data processing. Jointly, they have appointed Treecompany and BPart as processor.

Do you have any questions or comments about this privacy statement or the way in which we collect personal data? Do you want to exercise one or more of your rights? Then please send an email to

You can also submit a complaint to the Belgian Data Protection Authority, Rue de la presse 35, 1000 Brussels, Tel. +32 (0) 2 274 48 00, email