Finding My Way UK – Privacy Notice
Introduction
This notice is intended to inform you of the way that data you enter in the Finding My Way UK website will be processed and what rights you hold as a data subject.
Please note that this information does not pertain to other data collected through Finding My Way UK research studies, such as survey data collected through Qualtrics or clinical data. Please refer to the Participant Information Sheets for further information about how all other data will be processed.
Edge Hill University is committed to protecting the rights and freedoms of individuals as detailed in relevant Data Protection legislation including looking after any personal data that it collects, uses or hold. This Data Processing and Privacy Notice describes how and why we collect and use personal information about you. It is issued under your right to be informed about how the University collects, uses and stores your personal data.
Data Protection Principles
We will comply with data protection legislation, which says that the personal information we hold about you must be:
- Used lawfully, fairly and in a transparent way
- Collected only for valid purposes that we have clearly explained to you and not used in any way that is incompatible with those purposes
- Relevant to the purposes we have told you about and limited only to those purposes
- Accurate and kept up to date
- Kept only as long as necessary for the purposes we have told you about
- Kept securely
What Personal Data does the University collect?
The Finding My Way UK programme includes a number of activities and worksheets, which give you the opportunity to enter information relating to your attitudes, decisions, emotions, experiences health and wellbeing; all of which will be regarded as your personal data.
As part of the programme you will have the option to enter data including:
- Your treatment options and decisions;
- Your sleeping patterns;
- Relaxation activities you complete;
- Areas in your life where you would like to see change;
- Your ideas for reducing stress;
- Your physical activity;
- Your mood;
- Your energy levels;
- Your nausea triggers;
- Therapeutic letters;
- Positive body statements;
- Your reasons for seeking intimacy and alternative ways to explore intimacy;
- Characteristics about yourself that you admire;
- Qualities that make you a good friend and citizen;
- Your personal goals;
- Your physical and emotional needs from your partner;
- Your plans for communicating assertively with your partner;
- Letters of appreciation to friends and partners;
- Your thoughts about your cancer;
- Your values;
- Areas of life that bring you happiness;
- Your plans for change;
- Your perceived costs and benefits of cancer;
- Your questions about fertility; and
- Your plans for ongoing health care.
You will be able to enter these data through online worksheets. These worksheets are structured as reflection activities, monitoring activities, goal-setting activities, and open spaces for you to write down your thoughts about cancer. Please note that these worksheets are presented for your benefit, and you are welcome to complete as many or as few of them as you would like. The decision to enter the data described above is entirely yours, and you may find that you enter some aspects of these worksheets and not others. This is totally okay.
What Special Category Data does the University Collect?
You have the option to enter special category data related to your health (e.g., your nausea triggers, mood, energy levels, physical activity, and treatment decisions) and your sexuality (e.g., your intimacy needs and alternative ways to meet these needs).
Why does the University need this data and how will the University use this data?
Previous research has indicated that taking an active role in engaging with mental health programmes, such as by completing worksheets, is associated with better emotional health outcomes. We have, therefore, provided a range of worksheets in the Finding My Way UK programme to help guide your reflection, monitoring, and goal creation activities in support of your mental health.
The data you enter will be stored securely on the Finding My Way UK website so that you can re-visit these worksheets and reflect on your previous answers. No one else will view the answers you have entered. The only processing the university will perform on your data is to store it and monitor whether or not you have completed the worksheets. We will not view what content you have entered in any of the worksheets. At the end of the Finding My Way UK study, we will delete these data.
What is the Legal Basis for processing the data?
These data are being processed/held based upon your consent to the processing of the data indicated by your participation in the programme and research. Special category data provided by you is also processed (held) for the purposes of a scientific research study.
For how long will the University keep this Data?
The University will store these data in accordance with the timescale outlined in the Participant Information Sheet for the study that you consented to take part in. You will have the opportunity to download all your personal data before the website is taken down at the end of the study.
Who has access to the data and with whom will the University share this data?
Members of the research team for the specific study that you have chosen to take part in (as detailed in the Participant Information Sheet), the website development team, and you will have access to the data. Members of the research team and the website development team have agreed not to view any of the content you have entered in the worksheets. The University will not share the data with anyone else.
How will the University keep this data secure?
We will encrypt your data using SSL data encryption. This is an advanced data encryption tool providing a similar level of security for your data that a bank would use.
Your duty to inform us of changes
It is important that the personal information we hold about you is accurate and current. Please update the data in these worksheets if your personal information changes.
What Rights do you have as a Data Subject?
As a data subject of the University, under the Data Protection legislation, you have a number of rights with regards to your data, dependent upon the legal basis for processing that data. As such you have the right to…
- Withdraw consent – where the University has used consent as the legal basis for processing;
- Be informed – about how the University, collects and uses your data;
- Access your personal data that the University holds and process;
- Rectify or correct any inaccuracies in your personal data that we hold;
- Be forgotten by requesting that your details are removed from the University systems;
- Restrict the processing of your data whilst it is being verified or corrected;
- Port your data in a machine readable and commonly used format;
- Object to certain processing by the University including direct marketing, automated decision making, profiling, scientific/historical research and statistics;
The above rights are not absolute and may only apply in some circumstances such as being dependent upon which lawful process has been used or whether an exemption may apply.
The following table details the right that accompany each lawful basis.
You may contact the University’s Data Protection Officer as necessary regarding your rights.
Who is the Data Controller and who is the Data Protection Officer?
The Data Controller is Edge Hill University, St Helens Road, Ormskirk, Lancashire, L39 4QP, UK. The Data Protection Officers is based at the University. You can contact us at the University address, on +44 1695 575171, or at dataprotection@edgehill.ac.uk.
How to raise questions, comments, concerns, or complaints.
Should you have any questions, comments, concerns or complaints regarding the use of your personal data you should contact the University’s Data Protection Officer as detailed above.
You may also raise any concerns or complaints with the Information Commissioner’s Office who may be contacted as follows:
Information Commissioners Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 0303 123 1113.
Changes to this Notice
We reserve the right to update this privacy notice at any time, and we will provide you with a new privacy notice when we make any substantial updates. We may also notify you in other ways from time to time about the processing of your personal information.
