Research Participants - How we use your personal information

Keele University is committed to protecting the privacy and security of your personal information.

This privacy notice describes how we collect and use personal information about you when you participate in a research project run by the university, in accordance with the General Data Protection Regulation (GDPR).

Keele University is a “data controller”. This means that we are responsible for deciding how we hold and use personal information about you. We are required under data protection legislation to notify you of the information contained in this privacy notice.

This notice applies to your participation in a research study or project run by Keele University

It is important that you read this notice, together with any other privacy notice or specific information you may already have been given (for example in Participant Information booklet/leaflets or on any consent forms etc), so that you are aware of how and why we are using such information.

Data Protection Principles

We will comply with data protection law. This says that the personal information we hold about you must be:

1. Used lawfully, fairly and in a transparent way.

2. Collected only for valid purposes that we have clearly explained to you and not used in any way that is incompatible with those purposes.

3. Relevant to the purposes we have told you about and limited only to those purposes.

4. Accurate and kept up to date.

5. Kept only as long as necessary for the purposes we have told you about.

6. Kept securely.

The kind of Information we hold about you

Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data).

There are “special categories” of more sensitive personal data which require a higher level of protection.

The Participant Information you will be given as part of the research project will tell you what types of personal information we will use in connection with the specific research study or project you are participating in and (where applicable) its sources, any data sharing or international transfer arrangements, and any automated decision-making that affects you.

How is your Personal Information collected?

You should already have been given information on how we obtain your personal data for the specific research project you are involved in. We will often get this infomration directly from you or from your healthcare provider (e.g. your GP or other NHS body)

How we will use information about you

In general terms, we use your personal information (including, where appropriate, sensitive personal information) to carry out academic and/or translational research in the public interest.

On rare occasions, we may have asked for your consent to use your personal information for research purposes. If we asked for your consent, you can withdraw this at any time; you should have already been told how to do this but if not, or if you are in doubt, please use the contact details below. Please note that your consent to use your personal information (which we rarely request) is separate from your ethical consent to participate in a particular research study (which we usually request for relevant types of research).

You are not legally or contractually obliged to supply us with your personal information for research purposes.

Data Sharing

We may have to share your data with third parties, including third-party service providers (e.g. cloud computing providers).

We require third parties to respect the security of your data and to treat it in accordance with the law.

We may transfer your personal information outside the EU.

If we do, you can expect a similar degree of protection in respect of your personal information.

Data Retention

How long will you use my information for?

You have already been told about the long-term use (and, where applicable, re-use) and retention of your personal information in connection with the specific research study or project you are participating in.

In general we will only retain your personal information for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements. Details of retention periods for different aspects of your personal information are available in our retention policy which is available from https://www.keele.ac.uk/recordsmanagement/recordsretentionschedule/

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

In some circumstances we may anonymise your personal information so that it can no longer be associated with you, in which case we may use such information without further notice to you. 

Your Rights

You have a number of rights with regards to how we process your information including access, correction, erasure and restriction.

Full details of these rights and how to exercise them can be found here : https://www.keele.ac.uk/informationgovernance/yourdata-yourrights/

Data Protection Officer

We have appointed a Data Protection Officer (DPO) to oversee compliance with this privacy notice. If you have any questions about this privacy notice or how we handle your personal information, please contact the DPO. You have the right to make a complaint at any time to the Information Commissioner’s Office (ICO), the UK supervisory authority for data protection issues.

DPO contact details : dpo@keele.ac.uk

ICO contact details : www.ico.org.uk

Changes to this Privacy 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.