This privacy notice is for projects covered by Newcastle University’s Data Security and Protection Toolkit (DSPT). The general information published on this page is intended to supplement the specific information that you have already been given (for example, on a participant information sheet or a consent form) in connection with your participation in a research study or project run by our academic researchers. In the unlikely event that there is any contradiction between this general information and the specific information that you have already been given then the specific information takes precedence. 

What is the purpose and legal basis of the processing? 

In general terms, we use your personal information (including, where applicable, special category data) for archiving, scientific research and statistical purposes. 

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. 

Your rights as a research participant  

Access to data in the NHS is strictly controlled and is via the express permission of the research participant: you have given the researchers permission to use and share your data for research purposes.  Sometimes, however, asking permission is not always possible, so researchers seek approval from the Confidentiality Advisory Board in order that they can access data for medical research without consent.  You can object to your data being shared under these arrangements by using the Patient data opt-out.    

Patient data opt-out allows everyone the opportunity to object to data being used for research and administration. Further information about this is available on the NHS website: https://your-data-matters.service.nhs.uk/. This objection holds unless you have given your express permission for your data to be used for research. 

If you have given your express permission this permission can be withdrawn by contacting your research team.  Withdrawing your permission means that no more data will be collected about you but data obtained up until the point of withdrawal will be kept and anonymised.   

How long is my information kept? 

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.   

Who can I contact? 

If you have any questions about the particular research study you are participating in, please use any contact details you have already been supplied with. 

The University Data Protection Officer can be contacted at rec-man@ncl.ac.uk 

Complaints (ICO)

If you are not happy with the way your information is being handled, or with the response received from us, you have the right to lodge a complaint with the Information Commissioner’s Office at Wycliffe House, Water Lane, Wilmslow, SK9 5AF (https://ico.org.uk/). 

Are changes made to this webpage? 

This webpage was last updated in March 2019. It is reviewed when necessary and at least annually.

List of Partner Organisations 

Newcastle Hospitals 

http://www.newcastle-hospitals.org.uk/about-us/freedom-of-information_how-we-use-information.aspx 

North Tyne and Wear  

https://www.ntw.nhs.uk/foi/data-protection/ 

Northumbria 

https://www.northumbria.nhs.uk/about-us/privacy-policy/ 

NHS Digital 

https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register 

Public Health England 

https://www.gov.uk/government/organisations/public-health-england/about/personal-information-charter 

Projects Covered by : Newcastle University – Health and Social Care Data  toolkit