CRN North West London - Data privacy notice

Data privacy notice

The National Institute of Health and Care Research (NIHR) Clinical Research Network (CRN) North West London is committed to protecting privacy, and we are legally required to process all personal information in accordance with the General Data Protection Regulation (GDPR).

For research participants

Information about you and how we use it

When you participate in a clinical trial, your medical treatment and family background may be recorded, on paper and computer, to help us care for you. The information is part of your health record and will be kept in case we need to see you again.

Members of the clinical teams looking after you may share your personal health information with each other. This team may include healthcare professionals, support staff and students. All NHS staff are bound by law and a strict code of confidentiality, and are monitored by their trust's Caldicott Guardian, who is responsible for ensuring confidentiality is respected. Your confidentiality is very important to us, and we have strict controls in place to protect your information.

The host trust of the CRN North West London is the Imperial College Healthcare NHS Trust.

How your records are used to help you

Accurate, up-to-date information about you:

helps staff to assess your health and care for you
will help staff to treat you in future, in hospital or elsewhere
allows staff to monitor and if necessary, investigate the care you have received

How your records help us

Accurate, up-to-date information about you:

helps us provide high quality care and meet all our patients’ needs
helps us train healthcare professionals and support research and development
is necessary for the hospital to be paid for your treatment
supports audits of NHS services and accounts
supports investigation of any incidents or issues that arise
contributes to national NHS statistics

Sharing your information

Sometimes we have to pass on information by law:

to notify a birth
when an infectious disease such as meningitis or measles may endanger the safety of others
where a formal court order has been issued
when sharing information with the police may prevent a serious crime, or prevent harm to you or other people

We may have to share information about you with non-NHS staff (for example Social Services). We will only do this if it is necessary, and if we need your consent we will ask you for it. If we have to share information about you, we will remove your personal details where possible.

We may arrange for external companies to type dictated correspondence. This typing may be done overseas. Your name and address is not added until the typed correspondence has been returned to us, so it is not possible for anyone outside the Trust to identify you.

In addition, information may be used for approved research projects. In most instances the information will be made anonymous so that you cannot be identified. If this is not possible, we will ask your permission or request approval from the Health Research Authority’s Confidentiality Advisory Group.

Should you not wish information about you to be used for research, you may let us know in writing by contacting the CRN North West London team, by email or in writing to:

Business Intelligence Manager
NIHR Clinical Research Network North West London
3rd Floor South Admin Block
Hammersmith Hospital
Du Cane Road
W12 0HS

Email: crnnwlondon@nihr.ac.uk

Your information rights

You have the right to know how we will use your personal information.
You have the right to see your health record (your medical notes). This is known as Right of Subject Access.
You have the right to object to us making use of your information.
You can ask us to change or restrict the way we use your information and we have to agree if possible.
You have the right to ask for your information to be changed, blocked or erased if it is incorrect.

Data privacy beyond research participation

The type of personal information we collect

We only collect data that we need, including:

Personal identifiers
Name
Job role
Organisation
Contact details

How we get the personal information and why we have it

Most of the personal information we process is provided to us directly by you to send communications including newsletters, event invitations, surveys and other relevant information or requests.

Under UK GDPR, the lawful bases we rely on for processing this information is your consent. You are able to remove your consent at any time.

How we store your personal information

Your information is securely stored. Your personal data is collected and processed only by people who require access to it for the purposes outlined above.

This is through secure, password-protected systems, and the data is stored on servers primarily located in the UK, or countries with robust data protection laws such as the USA.

Your data protection rights

Under data protection law, you have rights including:

Your right of access - You have the right to ask us for copies of your personal information.
Your right to rectification - You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
Your right to erasure - You have the right to ask us to erase your personal information in certain circumstances.
Your right to restriction of processing - You have the right to ask us to restrict the processing of your personal information in certain circumstances.
Your right to object to processing - You have the the right to object to the processing of your personal information in certain circumstances.
Your right to data portability - You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.
You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you. Please contact us in writing or by email if you wish to make a request.

Queries or complaints

We take data privacy very seriously at the NIHR CRN North West London. We encourage anyone to bring to our attention any potential issues with the way we have handled data.

For this and any query related to data privacy, please get in touch in writing or by email:

Communications
NIHR Clinical Research Network North West London
3rd Floor South Admin Block
Hammersmith Hospital
Du Cane Road
W12 0HS

Email: comms.crnnwl@nihr.ac.uk

Changes to this policy

This policy was last updated on the 4 April 2022.