ECoWeb Study Privacy and Personal Data Protection Policy Version 0.8 dated 10.09.2020
This document has been designed to explain what data we will collect from you, why and what happens to it. If you do not find the answer to your questions, please contact us at this email: email@example.com
What will my data be collected for?
The legal basis for your data collection is for the purpose of research carried out in the public interest, and we will use your contact information for the purpose of contacting you about the trial.
The consortium is a research group of Universities and collaborating companies. We are investigating the role of emotional skills (emotional intelligence or emotional fitness) in the well-being of young people by following them over one year. It includes the opportunity to use a self-help mobile app. We will test if the app improves well-being in young people.
Who will have access to my data?
Only members of the EU funded ECoWeb consortium will have access to your data during the study.
After the study ends it may be that academic journals and other research teams will ask for data from the study to be made public (so they can carry out further research or check our findings). The data they use will not include your name or any of your contact details.
There are 4 places in the Solution* that your data can be stored, accessed and processed:
The data you enter when you complete your first assessment and complete follow ups will be collected and stored through a third-party specialist password protected secure survey website called Qualtrics. You will access this website through our website www.mymoodcoach.com.
The University of Exeter Clinical Trials Unit will collect and store messages sent via our website and data entered into our Qualtrics survey website.
Data from the app will be collected and stored by our Monsenso (a Danish technical partner in the consortium) before being sent to the Exeter Clinical Trials Unit.
Voice files recorded on the app will be irreversibly scrambled beyond recognition, collected and stored on a secure server hosted by STRATO before being downloaded and stored for analysis by AuDEERING (a German technical partner in the consortium).This data and analysis will be sent on to the Exeter Clinical Trials Unit.
The collected data held at the Exeter Clinical Trials unit will be securely transferred without your contact details within the ECoWeB consortium. Data will be transferred so that partners can analyse the data and answer scientific questions.
All data transfer will be encrypted and kept securely on password-protected secure servers.
Data on traffic to our website will be collected using google analytics. This is to help us know who is using the different pages on the site. This data will not be linked to your contact details.
*The Solution is the IT network that collects, transfers and stores your data during the trial.
**Personal Data will not be sold, leased, transferred, shared, or otherwise accessed by or to any third parties**
Who are the data controllers and data processors?
The University of Exeter is the ‘Data Controller ’ for ECoWeb. The Council of the University, as the governing body, is ultimately responsible for compliance with current data protection legislation. The University will take the appropriate measures to ensure compliance and to protect data subject’s rights under the legislation. Our technical partners Monsenso and AuDEERING are data processors because they will collect data from you via the app. Our recruitment sites (Ludwig Maximilian University, Germany; Gent University, Belgium; Universitat Jaume I of Castellón, Spain) will also be data processors. They will receive data for analyses and to contact participants living in their country. All data processors have signed legal Data Processing Agreements with the Data Controller (the University of Exeter) to ensure that your data is collected, transferred, processed and stored according to General Data Protection Regulation (GDPR).
The Data Controller is responsible for and is able to demonstrate compliance to GDPR regulations. Under GDPR regulations you have the following rights:
GDPR 1. The right to be informed
This refers to your right to know what data will be collected from you, when, how and why and to give voluntary consent for this. The following sections describe the uses for the different types of data:
What information do we want to collect?
Personal Contact information
We want to collect your name, address, phone number, email addresses, age, gender and country. We need your contact details so we can get in touch with you with information about the study. This includes sending you a copy of the information sheet, consent form and this data protection information. We need your email and phone number to set you up on the app, to send password reminders, to send links and reminders for follow up assessments and vouchers for completing tasks, and to contact you if you raise questions or report suicide risk. We will keep your contact information while you are in the study to contact you. These contact details will be only provided to the team in your recruitment country (UK, Spain, Germany, Belgium), to our partner Monsenso so they can set you up on the app and to a third-party electronic shopping voucher provider who will use this information to give you access to their website so you can access and spend your Shopping vouchers. Your details will not be passed to anyone for any sales or marketing purposes.
Your information will be kept confidential and stored securely and password protected. Your contact details (name, email, telephone number) will be kept separately from all other data. Your contact details will be destroyed by the end of September 2022 (anticipated study end) or before this date if you request this. The assessment data collected in our survey website is separated from contact details when it is sent to the Clinical Trials Unit. Your other data will be kept for another 7 years, in line with good research practice. We are unable to destroy your data once your contact details have been removed and this routinely happens before the end of September 2022.
All staff accessing your personal data are trained in data protection and confidentiality.
Parental Contact details
If you live in the UK then you are legally able to give consent to take part without parental permission.
Health and Emotion Information
The website will ask you questions about your health and wellbeing, your emotions and your emotional skills, and your family background. We need this to check the study is right for you. We also need it to conduct research into how emotions, emotional skills, and well-being change over time in young people. We will examine what influences wellbeing over time. We will test which self-help strategies in the app might be most helpful. Our specialist survey site, Qualtrics, has been reviewed by the data controller and found to be GDPR compliant.
App usage and responses
We will collect data on how you use the app. This includes how often you use it, which elements you use, etc. We will also collect your responses on the app, such as the scores or answers you enter. We collect this data so we learn what is helpful or not in the app and improve it. Your camera, messages, phone calls, contacts and location will not be accessed, read, listened to or recorded at any time.
The website and the app routinely collect technical data such as hardware configuration, software configuration, access provider, data exchanges and use of our websites. We collect this so that we can run the website and app efficiently and keep your data secure. Technical data will not be linked to your contact information unless you ask us for technical support as we will need to contact you to provide help.
We will collect voice recordings for those users who choose to describe an emotional event vocally. Voice recording is optional. You have to actively choose to record your voice by clicking the record button. The voice recording is automatically analysed on the app. The analysis will identify sound qualities such as pitch and tone. To ensure confidentiality, each recording will be broken up into tiny bits and irreversibly scrambled beyond recognition on the app. This means that no-one can hear what you said and therefore hides your identity. This content-free file will be encrypted and sent to a secure server. The voice data is collected to support research into identifying emotions from the voice.
The trial manager and site research teams regularly monitor the results of the study so we can report on how the study is going to our Study Steering Committee. Participant well-being is reported to the relevant committee, only if this is needed. In either case, contact details are not included in the reports.
For GDPR rights 2 to 6, we can only respond to these requests whilst we still have your contact details linked to your data.
GDPR 2. The right of access
This refers to your right to be able to check what data is being held on you. You can write to us at any time asking to know what personal information is being held where and for what purpose. We must respond within one month.
GDPR3. The right to rectification
This refers to your right to be able to correct any information that is incorrect. You can write to us to ask for any incorrect personal data about you to be corrected. You can expect for this to be done within one month.
GDPR 4. The right to erasure
This refers to your right to have some or all of your data to be removed. You may ask us to delete or remove personal data at any time. We must do this within one month of your request and this routinely happens at the end of the study in December 2021.
GDPR 5. The right to restrict processing
You are at any time entitled to withdraw your consent to our processing of your Personal Data.
GDPR 6. The right to data portability
You can ask to be provided with a copy of your data in usable format. We will provide this within one month.
GDPR 7. The right to object
You can withdraw from providing data to the app or website at any time.
GDPR 8. Rights in relation to automated decision making and profiling.
We do not provide medical care. There is also no automated decision making or profiling that would affect the medical care you receive elsewhere.
If you have any questions about the study or on how to exercise your rights then contact your local research team:
The right to complain
At any time, you are entitled to file a complaint to the governance officer at the University of Exeter about our processing of your personal data. Her contact details are:
Information Governance Manager and Data Protection Officer
The University of Exeter, Compliance, Governance and Risk
c/o Northcote House, The Queen's Drive, Exeter, EX4 4QJ
*“data controller” means a person who (either alone or jointly or in common with other persons) determines the purposes for which and the manner in which any personal data are, or are to be processed.
“data processor”, in relation to personal data, means any person (other than an employee of the data controller) who processes the data on behalf of the data controller.
“processing”, in relation to information or data means obtaining, recording or holding the information or data or carrying out any operation or set of operations on the information or data, including—
a) organisation, adaptation or alteration of the information or data,
b) retrieval, consultation or use of the information or data,
c) disclosure of the information or data by transmission, dissemination or otherwise making available