Disclaimer

The REBECCA Google Chrome Plugin (the ‘Plugin) is developed and provided in the context of a European research project called ‘REsearch on BrEast Cancer induced chronic conditions supported by Causal Analysis of multi-source data’ (the ‘REBECCA project’). More information on the REBECCA project and the project partners (jointly: ‘us’ or ‘we’ or ‘Joint Controllers’) that are involved can be found on the project website (https://cordis.europa.eu/project/id/965231) of the European Commission as well as on the REBECCA website (https://rebeccaproject.eu/). Although the greatest possible care has been exercised to ensure the correctness and completeness of the information contained in the REBECCA Plugin, we do not accept any responsibility or liability for the content thereof. You are responsible for the content that you upload in the Plugin. By registering your account and by using the REBECCA Plugin, you provide us with data, such as your unique username and your online interactions and activity (e.g. websites visited). By accepting these terms you agree that the project partners may use this data for the purposes of implementing the REBECCA project. In view of the nature of the Plugin and the REBECCA project we may decide, at our sole discretion, to delete certain uploaded data that do not comply with the project’s scope. We may also decide to terminate your registration and delete all data that have been uploaded via the Plugin with immediate effect in the event you do not use the Plugin for its intended purposes. Furthermore, we may at any time amend this disclaimer and policy. Amendments will enter into effect as soon as you provide your consent through the Plugin. If you do not agree to changes to the terms, we may need to terminate your registration in the Plugin and delete all data that you provided.

Privacy Policy

We attach great importance to the security and confidentiality of your personally identifiable information (“Personal Data”). This Privacy Policy describes our policies and procedures on the collection, use, storage and disclosure of your Personal Data when you use the REBECCA Plugin.

Eligible users

In order to use the REBECCA Plugin you must be a patient participating in the clinical trial in one of the clinical partners of REBECCA: La Fundación para la Investigación del Hospital Clínico de la Comunidad Valenciana (INCLIVA) in Spain, Stavanger University hospital (SUH) in Norway, or in a hospital of Region Stockholm (RSTO) in Sweden.

Joint Controllers

REBECCA partners jointly determine the means and purposes of the processing of your Personal Data occurring within the REBECCA Plugin. For that reason they are joint controllers and have entered into a relevant joint controllership agreement which is available for review upon request. If you wish to receive a copy please reach out to the contact point for your country (see contact details provide below).

What information is collected?

By using this Plugin, you provide us with your Personal Data. In the course of browsing the Internet on your PC/laptop, we receive Personal Data from your browser. You will be assigned a unique username (pseudonym), login to the Plugin and provide your consent for the Plugin to track your online activity. The Plugin collects and stores Personal Data including the websites visited, the search queries performed, social profiles and the activity in them. All uploaded data are pseudonymized and connected with this username. No personally identifiable information (e.g., names, IPs) is collected,.

You can customize the monitoring at any time from the Plugin settings page. From there, you can exclude certain browsing activities (e.g., websites visited) from being monitored and define specific sources to be excluded from monitoring. You can also delete any uploaded data you feel uncomfortable being analysed or completely erase all collected data. Moreover you can define a time delay (e.g. 24 hours) after which data are allowed to be processed by REBECCA system. This means that data will be processed only after the specified time period has elapsed from the time the data were collected.

What is the legal basis for the processing of your Personal Data?

We process your Personal Data to provide you with the functionalities of the REBECCA Plugin , pursuant to Articles 6.1.a) and 9.2.a) of the GDPR i.e. based on your explicit consent. Providing your Personal Data to us is voluntary, yet necessary for you to be able to use the REBECCA Plugin. By downloading and using the REBECCA Plugin you agree to the collection and use of your Personal Data in accordance with this Privacy Policy.

How is your information used?

We collect your Personal Data in order to develop analysis tools that, in the next stage of REBECCA, will be used to study the complex array of lifestyle parameters that might be associated with breast cancer recovery. The analysis results will then be used to create clinical guidelines and practices for post-cancer treatment.

More information about our research can be found at https://rebeccaproject.eu/.

We also use your Personal Data to develop and test new features of the REBECCA Plugin and to provide technical support and troubleshooting activities.

Profiling

As a result of cancer, patients may suffer from anxiety, stress, depression, and other mental health issues. Online interactions can convey cognitive and emotional state. Patients are accustomed to expressing their thoughts and feelings through social media and they usually search for their symptoms on the web (forums, search engines, etc.).

Analysing the online activity of patients (both their browsing history as well as their activity in social media) provides information about their cognitive and emotional state and allows to predict the deterioration of their emotional well-being. Doctors can exploit the predicted emotional state of patients to take action, such as arranging visits at the hospital or providing consulting to them. Doctors can also see how the treatment can affect the emotional well-being and try to find new ways to overcome the adverse effects. To this end, REBECCA’s goal is to create an emotional indicator (for each individual patient) which will represent that patients’ emotional state based on the patient’s online activity.

For the above purpose, REBECCA implemented this web plugin, that will be installed on your PC/laptop.

In order to enable the online activity monitoring you will have to explicitly consent (by clicking on the consent tick box) to the monitoring of your online activity. You will be able to pause and resume monitoring (e.g. in order to stop monitoring whenever you conduct research on the symptoms of another person). You will also have access to the collected data (URLs and queries, visits, comments, reactions, etc.) and will be able to edit the browsing history (deleting all or selected browsing history data).

By consenting to install the REBECCA plugin, you will allow REBECCA to collect prospective data on your online activity on:

·       Facebook (queries, comments, reactions, visits)

·       YouTube (queries, comments, reactions)

·       Web browsing history (queries, websites visited).

No directly identifiable personal information (e.g., name, IP address) will be stored within the REBECCA 360º platform. The data ingested will be pseudonymized: a unique ID will be assigned to each patient, with the key allowing to re-identify that patient being held outside the REBECCA system, by the patient’s doctors). 

A dashboard will allow you to view all the data collected by the plugin from your online activities. You will be able to delete and thus exclude from analysis specific records of data that you feel uncomfortable with (for example if you run research on somebody else’s symptoms or when someone else uses your device). Data will be then directly transmitted to the REBECCA server via secure and encrypted SSL, for the purpose of extracting your emotional indicator (through algorithms that extract feelings from texts).

Access to stored patients’ data is restricted. Under no circumstances will the clinicians (i.e. doctors and nurses) be allowed to view raw data of the your online activity. Instead, they will be able to see only your predicted emotional indicator.

How is your information shared?

Your Personal Data is only shared between the REBECCA project partners and occasionally with our external vendors (such as providers of cloud infrastructure services that we use to implement the REBECCA tools, and with whom we entered into appropriate data processing agreements), all of whom are located within the European Economic Area. Your personal data is not stored, used or exported outside the European Economic Area (i.e. European Union and Norway).

How is your information secured?

Personal Data collected through the REBECCA Plugin is treated as confidential. Your Personal Data will not be lent, rented, sold or made public. We have implemented electronic and physical security measures, such as secure and encrypted connections and access on a need-to-know basis only. Your data will be pseudonymised. Authentication and authorisation mechanisms have been implemented to regulate access both to the REBECCA Plugin and to your Personal Data.

How long will we retain your data?

Generally, your Personal Data will  only be stored for the term of the REBECCA project. After the REBECCA project ends, the data collected via the Plugin will be stored on the REBECCA platform for a period of 12 months, upon the lapse of which the data will be irreversibly erased from the server (as the REBECCA platform will be shut down). Please note however, that prior to shut down, your Personal Data (organized in data sets) will be exported from the REBECCA platform to the clinical partner you enrolled with. Further processing by that clinical partner will take place in accordance with the patient consent form that you signed when enrolling to participate in the REBECCA project. That clinical partner will be an independent controller of your Personal Data from that moment on.

Since REBECCA participates in Open Research Data Pilot, materials generated under the REBECCA project will be disseminated to the public in accordance with the Open Access Strategy and the REBECCA Grant Agreement. However, any Personal Data that they might contain shall be anonymized. Any personal data that is not anonymized, and could be used to identify individuals, falls outside the scope of the Open Access Strategy and thus will not be made open. At any time you may delete the REBECCA Plugin from your device. This will not affect the processing of your data collected via the Plugin prior to your deletion of the REBECCA Plugin.

Rights of data subjects

You have the right of access, the right to rectification, the right to erasure (also known as the right to be forgotten), the right to object to or to restrict the processing of your Personal Data, the right to withdraw your consent[1] as well as the right to data portability (to the extent permitted by law). Such a request can be submitted electronically to any of the REBECCA partners, who may forward your request to another project partner that will decide upon your request. You can submit your request using the contact details provided below.

If you are dissatisfied with the processing of your data by us, you have the right to contact the competent data protection authority of your country (for a complete list of all national data protection authorities go to https://edpb.europa.eu/about-edpb/about-edpb/members_en).

Updates to this Privacy Policy

We can change this Privacy Policy on our own initiative at any time. If any material changes to this Privacy Policy shall affect the processing of your Personal Data, we will communicate these to you via a pop-up screen inside the REBECCA Plugin, prior to the changes becoming effective and update the “Last updated” date at the top of this Privacy Policy. We invite you to read the latest version of this Privacy Policy on the REBECCA Plugin, available also on the REBECCA website.

Contact information

Centre for Research and Technology Hellas is one of the REBECCA partners responsible for the processing occurring within the REBECCA Plugin and acts as a primary contact person with respect to REBECCA Plugin functionalities and troubleshooting.

If you have any questions, complaints or requests regarding the use of your personal data, you can contact Centre for Research and Technology Hellas using the contact details below:

Centre for Research and Technology Hellas 

6th km Charilaou-Thermi Rd

57001 Thessaloniki

Greece

Website: www.certh.gr

Tel.: +30 2310 498100

Principal Investigator: Dr. Symeon Papadopoulos

Email: [email protected]

For Spain you may also contact:

Rafael Barajas Cenobio (DPO)

Email: [email protected]

Phone number: +34 96 197 35 35

INCLIVA, Avenida Menéndez Pelayo 4 acc. 46010

Valencia, Spain

For Norway you may also contact:

Kristin Jonsdottir (PhD),

The Research Department, Stavanger University Hospital

E-mail: [email protected]

Phone: +47-416 31 063

Sweden you may also contact:

Ioannis Ioakeimidis,

Department of Biosciences and Nutrition, Karolinska Institute

E-mail: [email protected];

Phone number: +46 (0) 735 056 651

A list of all of the REBECCA partners (with links to their individual websites and contact details) is available here: https://rebeccaproject.eu/consortium/.  

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The Privacy Policy of the website is available here.

The Privacy Policy of the patient App (pApp) is available here here.

The Privacy Policy of the companion App (cApp) is available here.

[1] Withdrawing your consent will not affect the lawfulness of processing based on consent that took place before its withdrawal.

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I consent to the use of my personal data in accordance with the above Privacy Policy