How we use, share and protect your personal information:
Research+Me is a database managed and monitored by a dedicated team of researchers at The Newcastle Hospitals NHS Foundation Trust. Its aim is to increase opportunities for patients and healthy volunteers to take part in clinical trials as well as supporting researchers in recruitment.
Research+Me invites individuals to express their interest in taking part in future research projects by registering their details via an online form – this could be as a patient with a chronic condition or as a healthy volunteer. The registry will store and process personal information for the reasons outlined in this privacy statement.
The Research+Me registry is hosted by the Newcastle upon Tyne Hospitals NHS Foundation Trust. The Trust is registered with the Information Commissioner’s Office – the UK’s independent authority set up to uphold information rights in the public interest. It is registered under number Z6173332.
This statement outlines five key principles:
- What information we hold about you.
- Why we keep information about you.
- How we will keep your information.
- How long we will keep your information.
- Who we share your information with.
It also outlines what laws are relevant to the storage and use of your personal information, including your rights under the General Data Protection Regulations (GDPR). You can find important contacts following this statement.
1. What information do we store about you?
Personal identifiable information including first name, surname, gender, NHS number and date of birth. Contact details including address, email address, phone numbers. **
Information regarding your significant health conditions.
You may receive information about a trial that is of interest to you. If you wish to volunteer for a trial we will need to assess whether you are suitable for it as each study has a specific set of criteria for inclusion of participants. To do this in an efficient manner we may ask you to complete an online survey, providing further information. We will only use that information to assess your possible suitability more accurately and will not share that data beyond the research team at Newcastle Hospitals NHS Trust.
** By supplying us with your contact details you are agreeing to us contacting you via one of the means listed.
2. Why do we keep the above information?
By registering your details with Research+Me you are agreeing to be contacted by a member of the research team at Newcastle Hospitals, with information regarding future clinical trials that you may be suitable for and interested in.
In order for us to do this, we need to keep a record of your name and contact details to share any relevant opportunities with you. Information regarding your gender and date of birth is stored to enable us to determine if you’re suitable to take part in a particular research project.
Your NHS number is unique to you and helps us identify you correctly and confirm that the information we hold about you is up to date. If you have not supplied us with your NHS number we can obtain it from your medical records using your other identifiable information if necessary.
Storing your information also gives you the opportunity to receive our newsletter and any other relevant information, for example information about research open days. You can, of course, opt out of receiving this additional information. To do this, our contact details are at the end of this document.
3. How is your information kept secure and confidential?
The Trust has a legal obligation to keep the information stored about you secure and confidential.
Everyone working for the NHS has a legal duty to maintain the highest level of confidentiality. Your information will only be seen by the research team and those providing or administering your care.
The information you provide us with will never be disclosed to anyone other than the professionals directly involved in your care and the participation in any trials you may be eligible for. (Unless in extreme circumstances where we believe your safety or that of others is at risk). See Section 5 for more details.
The information you provide is held on a secure, password protected electronic database and kept in accordance with current legislation – it can only be accessed by members of the research team at Newcastle Hospitals NHS Trust. All NHS staff are trained to handle your information in the correct manner in order to maintain your privacy and confidentiality.
4. How long is your information kept for?
For as long as you are registered with the Research+Me.
If you wish to withdraw from the registry, you are free to do so at any point without it affecting your care or individual rights and we will delete your information from the registry database. Please note that by doing this you will no longer be able to be contacted by a member of the research team regarding future studies. Our contact details can be found at the end of this document.
5. Who will we share your information with?
Your data will only be shared with the research team and the professionals directly involved in your care at Newcastle Hospitals NHS Trust.
However, if you do not live in the Newcastle area, we may offer you the opportunity to take part in research at an NHS hospital local to you. We will not share your data with researchers at other NHS sites without your permission to do so. If you are suitable to take part in a clinical trial at a hospital local to you we may ask if we can share your contact details but will provide you with the local researcher contact details so that you can decide if you want to contact the researchers directly.
We will never disclose any of your data or information to third party commercial organisations.
What laws govern the handling of your personal data?
- Data Protection Act 2018
- The Human Rights Act 1998
- Freedom of Information Act 2000
- NHS Codes of Practice
Your rights under GDPR
Personal information is defined under GDPR (General Data Protection Regulations) as “…any information relating to an identified or identifiable person; an identifiable person is one who can be identified directly or indirectly, in particular by reference to an identifier such as a name, identification number, location data…or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that person”.
These can be summarised in eight simple steps:
- The right to be informed about the collection and use of your personal data.
- The right to access information stored about you.
- The right to rectification – information you consider inaccurate can be rectified.
- The right to erasure – you have the right to be removed from the Research+Me.
- The right to restrict processing – you can stop information being used under certain circumstances.
- The right to data portability – you can have information about you provided in a format which is accessible to you and understandable.
- The right to object to your information being used in certain circumstances.
- Rights in relation to automated decision making and profiling – the right to prevent automated decision making and profiling where there has been no human involvement.
Please contact us for any enquiries regarding your personal information.
Useful contacts
Research+Me Team
For general enquiries and requests to stop receiving the newsletter or to amend or remove your details.
NIHR Patient Recruitment Centre – Newcastle
Newcastle upon Tyne Hospitals NHS Foundation Trust
Campus for Ageing and Vitality
Westgate Road
Newcastle upon Tyne
NE4 6BE
Email: [email protected]
Tel: 0191 282 3981
Senior Research Sister
For enquiries relating to privacy, confidentiality or registering your health conditions.
NIHR Patient Recruitment Centre – Newcastle
Newcastle upon Tyne Hospitals NHS Foundation Trust
Campus for Ageing and Vitality
Westgate Road
Newcastle upon Tyne
NE4 6BE
Email: [email protected]
Tel: 0191 282 1369
Newcastle Hospitals Data Protection Officer
Email: [email protected]
Tel: 0191 223 1862
Information Governance Team
Email: [email protected]
Tel: 0191 233 1805
The Caldicott Guardian
Email: [email protected]
Useful contacts
We reserve the right to update this privacy notice at any time. We will only notify you with a new privacy notice when we make any substantial updates. Otherwise, all updated versions will be posted on the Research+Me website. We may also notify you in other ways from time to time about the processing of your personal information.