Patient & Public Involvement Groups Privacy Policy

The data we hold about you will be data which you have provided to us, or which results from your engagement with us.

Depending on which PPI group you are a member of, our records may include:

• Contact Details – for example, your name, postal address, email address and telephone number (we will update these whenever you tell us they have changed).
• Engagement Details – for example, details of meetings or events you have attended, research or education ideas you have submitted, documents and materials that you have provided feedback on.
• Family and/or Health Details – for example, where you have told us this information because your interests relate to specific health conditions relevant to yourself or a member of your family.
• Personal Details – for example, any accessibility requirements or dietary preferences you or your family may have when attending an event with us.
• Diversity Details – for example, your gender, race, ethnicity etc, where this is relevant.
• Financial Details – for example, if you are paid for your involvement in, or travel to, certain PPI events.
• Your Contact Preferences – for example, whether you want to be contacted by email or by post, to help us engage you in the ways most relevant and accessible to you.

We will retain your data for the duration of your involvement with your PPI group, or until you ask us to do otherwise.

The University primarily uses your data to communicate with you about PPI activities and opportunities. This can include:

• Sending you updates and newsletters
• Inviting you to meetings and events
• Asking you to suggest research ideas
• Informing you of research results
• Inviting you to interview prospective students
• Inviting you to take part in student assessment or teaching activities as a patient volunteer
• Working with you to design new research studies or teaching materials
• Asking you to make suggestions about the language we use, and to help us design plain language summaries

We may contact you by post, telephone, email, text or other electronic means (for example through social media), depending on the communication preferences you have shared with us.

The only time the University would share your data with an external organisation would be when that organisation is acting on our behalf, for example if you have volunteered to attend an event and we are making the travel arrangements for you with a travel company, or if we need to pass information about your dietary requirements or accessibility requirements to the venue where the event is taking place.

Your data will only be shared in support of the University’s PPI activities.  The University does NOT sell data to third parties, or allow third parties to sell on data where data is shared with them.

Your electronic data is held securely in password-protected files on the University’s computer network and any paper data is held securely on University premises. Your data is accessible to a limited number of University staff who are directly involved with your PPI group. It is mandatory for all University staff to undertake data protection and information security training.

The University may contact you by email or post unless you request otherwise, and by telephone, text or other electronic means, depending on what you have given your consent for.  If you no longer want to receive communications in a particular way, please contact the Administrator for your PPI group. 

You have the right to:

• Ask to see, correct or delete the data we hold about you.
• Object to your data being used for specific purposes.
• Object to receiving communications and direct marketing.
• Ask for your data to be transferred electronically to a third party.

Your participation in PPI activities is entirely voluntary.  If you want us to delete your data at any time, please contact the Administrator for your PPI group.  If you ask us to delete your data, we may maintain a skeleton record of your details, showing that we received and acted on your instructions, in case you wish to check this in the future.

If you ask us to delete your data, this would mean that you would no longer be part of your PPI group, and would no longer receive information from us or be able to participate in PPI activities.

Queries or concerns

The University’s Data Protection Officer is responsible for monitoring compliance with relevant legislation in relation to personal data and can be contacted:

By email: dataprotection@exeter.ac.uk
By post: The Data Protection Officer, University of Exeter, Northcote House, The Queen’s Drive, Exeter EX4 4QJ

You can also contact the Data Protection Officer if you have any queries or concerns about the University’s processing of your personal data.

You also have the right to lodge a complaint with the Information Commissioner’s Office at www.ico.org.uk/concerns, or via their helpline on 0303 123 1113.

If you have any questions regarding this privacy policy please do not hesitate to contact the Administrator for your PPI group, or the University’s Data Protection Officer.

This privacy policy will be kept under review. Any changes will be updated on our website and communicated to you as appropriate.

This privacy policy was last updated in May 2018.