Participation in the study: “Evaluating an evidence based self-guided therapeutic app intervention for adults with visible differences experiencing appearance related distress.”
Lead Researcher: Dr Fabio Zucchelli (Fabio.zucchelli@uwe.ac.uk)
Purpose of the Privacy Notice
This privacy notice explains how the University of the West of England, Bristol (UWE) collects, manages and uses your personal data before, during and after you participate in the research project entitled: “Evaluating an evidence based self-guided therapeutic app intervention for adults with visible differences experiencing appearance related distress” ‘Personal data’ means any information relating to an identified or identifiable natural person (the participant). An ‘identifiable natural person’ is one who can be identified, directly or indirectly, including by reference to an identifier such as a name, an identification number, location data, an online identifier, or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.
This privacy notice adheres to the General Data Protection Regulation (GDPR) principle of transparency. This means it gives information about:
- How and why your data will be used for the research;
- What your rights are under GDPR; and
- How to contact UWE Bristol and the project lead in relation to questions, concerns or exercising your rights regarding the use of your personal data.
This Privacy Notice should be read in conjunction with the Participant Information Sheet and Consent Form provided to you before you agree to take part in the research.
Why are we processing your personal data?
UWE Bristol undertakes research under its public function to provide research for the benefit of society. As a data controller we are committed to protecting the privacy and security of your personal data in accordance with the (EU) 2016/679 the General Data Protection Regulation (GDPR), the Data Protection Act 2018 (or any successor legislation) and any other legislation directly relating to privacy laws that apply (together “the Data Protection Legislation”). General information on Data Protection law is available from the Information Commissioner’s Office (https://ico.org.uk/).
How do we use your personal data?
We use your personal data for research with appropriate safeguards in place on the lawful bases of fulfilling tasks in the public interest, and for archiving purposes in the public interest, for scientific or historical research purposes. We will always tell you about the information we wish to collect from you and how we will use it. We will not use your personal data for automated decision-making about you or for profiling purposes.
Our research is governed by robust policies and procedures and, where human participants are involved, is subject to ethical approval from either UWE Bristol’s Faculty or University Research Ethics Committees. This project has been reviewed and approved by the Faculty Research Ethics Committee at the University of the West of England. Any comments, questions, or complaints about the project can be raised with the lead researcher or addressed to: ResearchEthics@uwe.ac.uk. The research team adhere to the Ethical guidelines of the British Educational Research Association (and/or the principles of the Declaration of Helsinki, 2013) and the principles of the General Data Protection Regulation (GDPR).
For more information about UWE Bristol’s research ethics approval process please see our Research Ethics webpages at: www1.uwe.ac.uk/research/researchethics.
What data do we collect?
The data we collect will vary from project to project. Researchers will only collect data that is essential for their project. The types of personal data that will be processed in relation to this research project are described in the Participant Information Sheet provided to you.
Who do we share your data with?
We will only share your personal data in accordance with the attached Participant Information Sheet and your Consent. In the case of this research project, only the researchers involved in the project will have access to your personal data.
How do we keep your data secure?
We take a robust approach to protecting your information with secure electronic and physical storage areas for research data with controlled access. If you are participating in a particularly sensitive project UWE Bristol puts into place additional layers of security. UWE Bristol has Cyber Essentials information security certification.
Alongside these technical measures there are comprehensive and effective policies and processes in place to ensure that users and administrators of information are aware of their obligations and responsibilities for the data they have access to. By default, people are only granted access to the information they require to perform their duties. Mandatory data protection and information security training is provided to staff and expert advice available if needed.
How long do we keep your data for?
Your personal data will only be retained for as long as is necessary to fulfil the cited purpose of the research. The length of time we keep your personal data will depend on several factors including the significance of the data, funder requirements, and the nature of the study. Anonymised data that falls outside the scope of data protection legislation as it contains no identifying or identifiable information may be stored in UWE Bristol’s research data archive or another carefully selected appropriate data archive.
Your Rights and how to exercise them
- Under the Data Protection legislation you have the following qualified rights:
- The right to access your personal data held by or on behalf of the University;
- The right to rectification if the information is inaccurate or incomplete;
- The right to restrict processing and/or erasure of your personal data;
- The right to data portability;
- The right to object to processing;
- The right to object to automated decision making and profiling;
- The right to complain to the Information Commissioner’s Office (ICO).
Please note, however, that some of these rights do not apply when the data is being used for research purposes if appropriate safeguards have been put in place.
We will always respond to concerns or queries you may have. If you wish to exercise your rights or have any other general data protection queries, please contact UWE Bristol’s Data Protection Officer (dataprotection@uwe.ac.uk).
If you have any complaints or queries relating to the research in which you are taking part please contact either the research project lead, whose details are in the attached Participant Information Sheet, UWE Bristol’s Research Ethics Committees (research.ethics@uwe.ac.uk) or UWE Bristol’s research governance manager (Ros.Rouse@uwe.ac.uk).