Privacy Notice

NCTU privacy notice for research participants and research team members

This data privacy notice describes how personal information is collected, used, retained and disclosed at Newcastle Clinical Trials Unit (NCTU) within Newcastle University.

The type of personal data we collect?

Personal data is any information which relates to you, or identifies you as an individual. It includes information which can directly identify you, and also information which may identify you if combined with other readily available information. Examples of Personal Data are: names, addresses, NHS number, telephone numbers, dates of birth, IP addresses.

Some personal data is considered sensitive and is called “special category data”. This includes data concerning: racial or ethnic origin, religious beliefs, trade union activities, physical or mental health condition, and sexual life or sexual orientation.

The specific type of personal data we collect and use about you, and the purposes for which we use it, depends on the particular research study or trial you are taking part in. The plans for each study or trial are detailed in the research specific information sheet and other information that has been provided to you as a participant or a member of the research team.

How we get the personal information and why we have it?

We will collect this information from you directly, and / or from the hospitals/GP practices/dental practices or other places you are being seen, sometimes we collect personal information and healthcare data from other sources such as national registries. For some trials or studies, data may also be collected from third parties, for example from those analysing samples (such as blood samples) or reviewing scans (such as heart scans). More details about all of this will be provided in the Patient Information Sheet for the trial or study.

The types of personal data we collect will depend on the trial/study, the information we need to identify you when communicating with third parties (e.g. hospital staff), the information we need to check processes have been followed accordingly, and whether the research team will be contacting you directly. To safeguard your rights, we will use the minimum amount of personally-identifiable information possible.

NCTU also collects personal data about:

• doctors, nurses and other staff involved in the recruitment, diagnosis, and treatment of participants taking part in our trials and studies;
• laboratory staff, company employees, and staff from other organisations supporting the trial;
• members of the public who contribute to the design and conduct of our trials; and
• healthcare professionals, patients and researchers who contribute to trial management groups, adjudication panels, and oversight committees.

What is the lawful basis for us processing personal information?

By law, we are required to identify a “lawful basis” for processing personal data. The lawful basis for processing personal data in NCTU is “task in the public interest” which means we collect data needed in order to complete research, which aims to improve healthcare for the general public. The lawful basis for processing special category data in NCTU is “scientific research”.  https://www.hra.nhs.uk/information-about-patients/

Will NCTU share my personal data with anyone else?

Data from studies and trials may be shared with other researchers in other organisations such as universities, NHS organisations or companies involved in health and care research. If we receive requests to use these research data, we will only agree to share it for valid and worthwhile research projects in health and care. The data we share does not identify individuals and is not combined with other data in a way that means individuals could be identified. We only share data with qualified researchers who agree to store and use data securely. Any data we share cannot be used to contact individuals, and does not affect anyone’s care, unless there is appropriate consent or approval.

Will NCTU transfer personal data to any countries or organisations outside the UK?

The transfer of data outside of the UK will depend on the individual trial/study. If the trial/study transfers data outside of the UK, details of the data transfer will be included in the Patient Information Sheet. The transfer of data outside of the UK will be covered under either an adequacy decision or a contract. In cases where no adequacy decision applies to the data transfer this happens under important reasons of public interest, namely research.

How we store your personal information

We have to keep your personal data for a number of years after a trial/study has finished in order to comply with laws and regulations which govern research. The length of time depends upon the type of trial or study you are involved in; you will have been told how long this is in the patient information sheet provided to you. We will not keep your personal data longer than we need to.

Personal data for staff involved in trials or studies is retained for the duration of the archiving period of the trial/study. This is in order to keep records of those individuals who have worked on the trial or study in accordance with the laws and regulations that govern research.  GDPR guidance - Health Research Authority (hra.nhs.uk)

How we protect your data?

We protect your personal data against unauthorised access, unlawful use, accidental loss, corruption or destruction.

We use technical measures such as encryption and password protection to protect your data and the systems they are held in. We also use operational measures to protect the data, for example by limiting the number of people who have access to the databases in which your data is held.

Your rights

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from a trial or study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

You are not required to pay any charge for exercising your rights. If you make a request, we have 30 days to respond to you.

Please contact the relevant trial/study team if you wish to make a request.

If you have any questions or concerns, or want to complain

If you have any questions or concerns about our use of your personal information please contact the trial/study team directly. If, after doing so, you still have concerns or questions, you may find the information you need on the University’s Data Protection webpage: https://www.ncl.ac.uk/data.protection/dataprotectionpolicy.

If this doesn’t provide what you are looking for, or if still have questions, or want to exercise any of your rights, you can contact the University’s Data Protection Officer.

The University's current Data Protection Officer is: Maureen Wilkinson

You can contact Newcastle University's Data Protection Officer at the following address:

Executive Office
Newcastle University
Newcastle upon Tyne
NE1 7RU
Email: rec-man@ncl.ac.uk

You can also complain to the Information Commissioner’s Office (ICO) if you are unhappy with how we have used your data.

The ICO’s address:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Helpline number: 0303 123 1113
ICO website