Data Protection Transparency and Privacy Notice

Data Saves Lives website


All content of this website [] (hereinafter the “Website”) is owned or controlled by the Data Saves Lives Project (hereinafter referred to as the “Data Saves Lives” initiative) The aim of this Website is to keep the public informed about the activities of the initiative and build awareness and understanding on the importance of shared health data.

This Privacy Policy informs you about how we, or our service providers, collect, use, and disclose your information, including personal information via this Website. If you have any queries about the exercising of your rights under GDPR please contact Gözde Susuzlu at

When does Data Saves Lives website process personal data?

1. visiting our website;

2. registering to receive our newsletter, event invitations and updates to our services and activities;

3. registering to attend our events and the subsequent management of the events that you attend;

4. sharing updates about our events, including speaker details, videos of presentations, photographs and interviews;

5. details about our task force and core team members;

6. in handling any queries that you may have about Data Saves Lives, its work or any other matters you may wish to discuss with us.

Data Saves Lives does not share your personal data between our members, or any attendee of our events or visitors to our website beyond what we have specified in this notice.

In each case, we retain the data for as long as we need to fulfil the above purposes of its processing and any legal obligations where we are required to handle and retain the data.

Visiting our Website (Cookies)

Data Saves Lives uses cookies on our website to improve your experience of using our website. We may collect and process anonymous information about your visit to this website, such as some of the pages you visit and some of the searches you perform. Such anonymous information is used by us to help improve the contents of the site and to compile aggregate statistics about individuals using our site for internal, market research purposes. In doing this, we may install “cookies” that collect the first level domain name of the user (e.g. “” from an email address of “”) and the date and time of access. “Cookies” as used by us cannot be used to discover the identity of an individual user. A “cookie” is a small piece of information which is sent to your browser and stored on your computer’s hard drive.

Cookies do not damage your computer. You can set your browser to notify you when you receive a “cookie”; this will enable you to decide if you want to accept it or not. We may obtain the services of outside parties to assist us in collecting and processing the information described in this section and all such third parties will be placed under the obligations described in the section “Non-disclosure of information”.

On occasion, we may use Internet tags (also known as action tags, single-pixel GIFs, clear GIFs, invisible GIFs and 1-by-1 GIFs) in combination with cookies at this site and may deploy these tags through a third-party advertising partner. These tags are placed on both online advertisements that bring users to the site and on different pages of the site. We use this technology to measure visitors’ responses to our sites and the effectiveness of our advertising campaigns (including how many times a page is opened and which information is consulted). The third-party partner may be able to collect anonymous aggregated data about visitors to other sites because of these Internet tags/cookies. Please be assured that we do not collect or seek through these tags or cookies any personally identifiable information about our visitors, such as names, addresses, email addresses or telephone numbers.

Registering to receive newsletters, event invitations and updates to our services

When registering for our newsletter, event invitations and updates to our services via our website or directly with our offices, we ask for your first and last names, your function in your company or institution, email address, the company or institution you belong to and the country you are based in. We ask you to select which of our core stakeholder groups you belong to. We also ask you for your title, but this is optional. We do not ask for any other details, personal or otherwise.

If you wish to stop receiving communications from Data Saves Lives, you are always able to unsubscribe via the available link on the email communications you will receive. In that event, we will delete you from our contact list and you will not be contacted again.

Data Saves Lives does not retain your contact details unless you have otherwise shared your details with us for the other purposes we outline in this notice or where a legal obligation must be met under Article 6(1)(c) of GDPR. You may always re-register to receive newsletters should you change your mind and wish to hear from us again.

Registering to attend any Data Saves Lives event and subsequent management of that event

When registering to attend a Data Saves Lives event via our website, invitation letters or directly via email, we ask for your title, first and last names, your function in your company or institution, email address, the company or institution you belong to, your role and the country you are based in. We ask you to select which of our core stakeholder groups you belong to. Furthermore, we ask you to provide us with your dietary preferences and any specific needs to cater for your attendance at our events. We do not ask for any other details, personal or otherwise.

When registering, Data Saves Lives processes your personal data to manage your attendance at our event with your explicit consent as a legal basis under Article 6(1)(a) of GDPR.

Once you have registered, we do not add you to a published attendance list unless we have obtained your explicit consent to do so under Article 6(1)(a) of GDPR.

Data Saves Lives retains your personal data to fulfil the purpose of managing your attendance at our event and for audit purposes after the event under Article 6(1)(c) of GDPR for legal obligation.

Data Saves Lives will add you to our contact list if you are not already on it to keep you informed of newsletters, further events and updates related to the initiative. You can unsubscribe from this list at any point at your convenience by contacting us as detailed in the first section.

Sharing Updates about our Events

Our events are recorded either through the filming of speakers, panels and audience members, audio recording or photograph for the purposes of updating our members and the wider public about our event. Under GDPR Article 6(1)(a) we seek the explicit consent from any participants that we record in any way for this specific purpose.

The consent is entirely freely given and you are free to grant it or not as you see fit without any impact on your participation in the event.

You may withdraw your consent for the recording and as soon as you do, we will remove the recording from public display immediately and provided we do not have to retain it under other legal obligation, destroy it without the need for any explanation from you at all. We cannot however remove names of speakers or panellists from a past agenda or meeting report as documenting a past fact where these are provided on our websites under events.

Handling communications from you about Data Saves Lives

When you contact us either from our contact us form or directly, we will process your personal data for the purposes of handling the reason for your contacting us.

If your query is general or related to your rights under GDPR, this will be with your explicit consent under Article 6(1)(a) of GDPR. We will retain a record of your query for one year for audit purposes. We will also add your contact details to our contact list but only if you explicitly consent to this in accordance with Article 6(1)(a) of GDPR.

What are my rights?

At all times, GDPR gives you the following rights which we will of course honour in full compliance with its provisions:

• the right to request access to any of your personal data that Data Saves Lives processes;

• the right to data portability where you can request a digital copy of the data for your own uses;

• the right to the rectification (correction) of your personal data where it is incorrect;

• the right to request erasure of your data as outlined by GDPR;

• the right to restriction of processing by Data Saves Lives including where you identify and raise a problem with the data processing until the problem is resolved;

• the right to object at any time to processing of your personal data including that which is based on Article 6(1) (f) of GDPR where we have identified a legitimate interest.

Where the processing of your personal data is based on your consent, you can withdraw your consent at any time and without any reason. Withdrawing your consent means that Data Saves Lives will not make use of your data any longer for the purposes that you consented to. This does not invalidate past uses of your personal data for which you gave consent and your personal data will continue to be processed in the event of any legal obligations that Data Saves Lives must meet.

Please note that you always have the right to lodge a complaint with the Belgian Privacy Commission at should you be unhappy with how we have handled your requests or any of your personal data.

Updates to how we process data and this notice

If we substantially change how we process your data (for example using a new tool or service provider) we will undertake a Data Protection Impact Assessment pursuant to GDPR Article 35. This would be the case if we identify that any changes require significant additional processing of your personal data and / or risks to your rights and freedoms.

Where we identify a clear need to update this notice we will inform you immediately.

Last updated 30 June 2019