EUPATI is committed to protecting and respecting the personal data that we hold. This privacy statement describes why and how we collect and use personal data and provides information about individuals’ rights. It also details what will happen in the event of a security breach and how these will be minimised.

It applies to personal data provided to EUPATI by individuals. We may use personal data provided to us for the purposes described in this privacy statement or as made clear before collecting personal data.

Personal data is any information relating to an identified or identifiable living person. When collecting and using personal data, our policy is to be transparent about why and how we process personal data.

We process personal data for several purposes, and the means of collection, lawful basis of processing, use, disclosure, and retention periods for each purpose are set out in the relevant sections below.

The personal data that is provided to us is ONLY provided directly from the individual concerned.

We take the security of all the data we hold seriously. Staff are trained on data protection, confidentiality, and security. We have a framework of policies and procedures which ensure we regularly review the appropriateness of the measures we have in place to keep the data we hold secure. Administrator roles for the Moodle, WordPress and Box are regularly reviewed and confidential and personal information is restricted to a need to know basis.


All information you provide to us is stored on the secure servers of our vendors. Where we have given you (or where you have chosen) a password which enables you to access certain parts of our Moodle platform, you are responsible for keeping this password confidential. Your account and password are issued to you as an individual, and we ask that you do not share your password with anyone.

Unfortunately, the transmission of information via the internet is not and cannot be completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted to our site; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.

Data that we hold

Moodle – e-learning platform for EUPATI Patient Expert Course

We provide services to individuals who use our EUPATI Moodle platform.

3.1.2 What data is collected?

When a new user is created, the minimum data collected is as follows:

  • Email
  • First Name
  • Last Name

We may gather other information where it’s volunteered, for example address, profile, and profile picture. Users are assigned a cohort and informational messages are sent to users via e-mail. Data on login activity is recorded (First access, Last access, Last IP address).

We record data on your progress throughout the EUPATI course and your input to Discussion Forums.

EUPATI Toolbox

A feature of is that individuals may subscribe to EUPATI communication. There are no other instances where personal data is collected.

Double opt-in and logging: The registration process to EUAPTI communication is done by a so-called double-opt-in procedure. After registration, you receive an e-mail asking you to confirm your registration. This confirmation is necessary so that nobody can register with your personal e-mail addresses. The registration for EUPATI communication will be logged in order to prove the registration process according to its legal requirements. This includes the storage of the registration and the confirmation time, as well as the IP address. Likewise, all changes to your data stored at the shipping service provider are logged, too.


The Box platform is used by EUPATI consortium members as a version-controlled document repository. Access to the system is invite only, and password protected. Confidential documents are only shared with those granted permission to do so. Public documents (such as the EUPATI PowerPoint Template) are shared as read only.


The WordPress platform is used by EUPATI authorised users to publish content to and the national platform sub-sites. Access to the system is password protected and any update must be accompanied by a corresponding PLATA stored on BOX.

What data is collected for EUPATI communication?

When you sign up to receive communication from EUPATI at a minimum you must provide your email address and consent to receive different types of communication.

You may also volunteer to provide additional information, specifically: name, country, organisation, Stakeholder, and member of national platform, in order for EUPATI to provide more targeted communication to you.

Applications for the EUPATI Course

The application submission data for the current cohort is stored securely on Box, applicants to previous cohorts are archived in a password protected backup. Participants may be requested to complete feedback surveys throughout the course. This data is anonymised.

Subscribers to EUPATI Webinars

Those wishing to accept an invitation to a EUPATI Webinar are asked to provide the following mandatory data: name, email, organisation, country & profile. The GoToWebinar tool is used to broadcast the webinar. Participants may receive a follow up email inviting them to receive information about future webinars and be requested to complete a survey following the webinar. This data is anonymised.

What data is collected for EUPATI communication?

When you sign up to receive communication from EUPATI at a minimum you must provide your email address and consent to receive different types of communication.

You may also volunteer to provide additional information, specifically: name, country, organisation, Stakeholder, and member of national platform, in order for EUPATI to provide more targeted communication to you.

Our consortium members

We collect personal data of members of the EUPATI consortium as part of the administration, management, and promotion of our business activities.

How long do we hold data for?

We retain the personal data processed by us in a live environment for as long as is considered necessary for the purpose(s) for which it was collected (including as required by applicable law or regulation, typically 6 years). We may keep data for longer to establish, exercise, or defend our legal rights and the legal rights of our clients.

In addition, personal data may be securely archived with restricted access and other appropriate safeguards where there is a need to continue to retain it.

Data we collect on people who use our services

When people visit our website, data is collected through tracking using Google Analytics. This data is of a generic nature. No personal data is collected apart from as mentioned in section 3.2 when an individual registers to receive EUPATI communication.

Why do we process personal data?

We process personal data provided by individuals who opt in to subscribe to by sending them regular updates or webinar invitations via e-mail.

There are several reasons why we will process the personal data that students provide us when using the EUPATI Moodle. As examples, these include;

  • Functionality. To allow individuals to use some functionality of our website, certain personal data must be entered for features to work as intended. An example of this is course reporting and completion.
  • Security. To keep our site safe and secure, we may sometimes collect personal data, for instance login information and other data that can be used to vouch an individual’s identity.

What data do we hold?

The data that we hold depends on what data was entered and for what purpose.

Where data was entered to engage with functionality of our EUPATI Moodle platform, that personal data may include their name, address, e-mail address, personal description, and photograph.

Where data was entered to engage with functionality of our website, that personal data includes their name and e-mail address only.

Where data was entered to register for a webinar, that personal data includes name, email, organisation, country & profile.

Where data is collected automatically, the data that we may collect includes technical information, including the Internet protocol (IP) address used to connect an individual’s computer to the Internet, login information, browser type and version, time zone setting, browser plug-in types and versions, operating system, and platform;

Other data about an individual’s visit, including the full Uniform Resource Locators (URL) clickstream to, through and from our site (including date and time); products viewed or searched for; page response times, download errors, length of visits to certain pages, page interaction information (such as scrolling, clicks, and mouse-overs), and methods used to browse away from the page.

Our website uses cookies to distinguish individuals from one another. This helps us to provide a better experience when individuals browse our website and allows us to improve our site.

Sharing personal data

We will only share personal data with others when we are legally required to do so unless you have given us consent to do so

Personal data held by us may be transferred to:

  • Third-party organisations that provide applications/functionality, data processing or IT services to us. We use third parties to support us in providing our services and to help provide, run, and manage our internal IT systems. For example, providers of information technology, cloud-based software as service providers, identity management, website hosting and management, data analysis, data back-up, security, and storage services. The servers powering and facilitating that cloud infrastructure are located in secure data centres around the world, and personal data may be stored in any one of them.
  • Third-party organisations that otherwise assist us in providing goods, services, or information
  • Law enforcement or regulatory agencies or those required by law or regulations

Occasionally, we may receive requests from third parties with authority to obtain disclosure of personal data, such as to check that we are complying with applicable law and regulation, to investigate an alleged crime, to establish, exercise or defend legal rights. We will only fulfil requests for personal data where we are permitted to do so in accordance with applicable law or regulation.

Security Breaches

Every effort has been taken to prevent such an occurrence but in the unlikely event of a security breach, the individuals involved will immediately be notified of the extent of the incident and what remedial actions are being taken. The EUPATI Management and Steering Group will also be informed and measures will be taken to ensure that future occurrences are prevented.

Locations of processing

Where possible, personal data resides within the EU territory but may be transferred to, and stored at, a destination outside the European Economic Area (EEA). It may also be processed by staff operating outside the EEA who work for one of our suppliers. We will take all reasonable steps to ensure that your data is treated securely, in accordance with this privacy statement.

We have taken steps to ensure all personal data is provided with adequate protection and that all transfers of personal data outside the EU are done lawfully. Where we transfer personal data outside of the EU to a country not determined by the European Commission as providing an adequate level of protection for personal data, the transfers will be under an agreement which covers the EU requirements for the transfer of personal data outside the EU.

Individual’s Rights

Individuals have certain rights over their personal data and data controllers are responsible for fulfilling these rights as follows:

  • Individuals may request access to their personal data held by us as a data controller.
  • Individuals may request us to rectify personal data submitted to us or, where appropriate, contact us via the relevant website registration page or by amending the personal details held on relevant applications with which they registered.
  • Individuals may request that we erase their personal data
  • Where we process personal data based on consent, individuals may withdraw their consent at any time by contacting us or clicking on the unsubscribe link in an email received from us.
  • Individuals may have other rights to restrict or object to our processing of personal data and the right to data portability.
  • Individuals may request information about, or human intervention into, any automated data processing that we may undertake.
  • If you wish to exercise any of these rights, please send an email to [email protected]


We hope that you won’t ever need to, but if you do want to complain about our use of personal data, please send an email with the details of your complaint to [email protected]. We will investigate and respond to any complaints we receive.

You also have the right to lodge a complaint with the data protection regulator for your country.

Data Controller and contact information

If you have any questions about this privacy statement or how and why we process personal data, please contact us at [email protected].

Changes to our privacy statement

This privacy statement was last updated on 24/05/18.