Research privacy notice

Who we are and what we do

Moorfields Eye Hospital NHS Foundation Trust is the leading provider of eye health services in the UK and a world-class centre of excellence for ophthalmic research and education.

Moorfields is one of the world’s most successful research active organisations. This means we aim to continue to be at the cutting edge of eye research, making new discoveries and developing better treatments with our partners and patients. Research has played a part in virtually every major improvement in eye care and will continue to do so. We all have a role to play to help achieve this goal. To drive research forward, maintain our reputation as a global research leader, but most of all to improve our patients’ care, it is vital that we recruit a diverse group of people, patients and healthy volunteers, to our research studies.

Why we collect personal identifiable information

Moorfields Eye Hospital conducts research under the General Data Protection Regulation (UK GDPR 2018). Data Protection laws allow us to use personal data for research with appropriate safeguards in place under the legal basis of public tasks that are in the public interest (UK GDPR 9 2 j).

The Trust also has a legal duty to undertake research under the NHS Act 2006 National Health Service Act 2006 (legislation.gov.uk).

Research at Moorfields Eye Hospital is governed by closely monitored policies and procedures stablished by the Health Research Authority (HRA). All research undergoes ethical scrutiny to ensure that it is conducted in such a way as to protect your interests and is of a high standard.

What information do we collect?

By law we are required to make sure that your data processing is lawful, fair and transparent.

All research projects are different and the information we collect will vary depending on the type of study and its purpose. In the conduct of specific research projects, we will tell you about the information we wish to collect from you and how we will use it.

We will seek your consent for the collection and use of your data where appropriate.

Researchers will only collect information that is essential for the purpose of the research.

Full details on the study, and the management of your data, will be given to you in an information sheet where appropriate.

Research data is normally anonymised/deidentified, and only authorised research members (by Ethics Committee and HRA) will have access to your data during its collection. In this way we ensure your privacy and rights are protected.

For children, young people and other vulnerable groups the rREC will agree an appropriate consent procedure to ensure participant rights are protected.

Who do we share your data with?

To communicate our research to the public and the academic community your anonymised/deidentified data is likely to form part of a research publication or conference presentation or public talk.

This will be clearly stated in the study documentation shared with you during the consent process.

Sharing of data can only take place through granted permission or through another legal avenue if participants permission cannot be obtained (e.g. for confidential patient information s251 support from the Confidentiality Advisory Group).

The Confidentiality Advisory Group (CAG) is an independent body which provides expert advice on the use of confidential patient information. This includes providing advice to us, the Health Research Authority (HRA) for research uses. It also provides advice to the Secretary of State for Health for non-research uses.

The key purpose of CAG is to protect and promote the interests of patients and the public, while at the same time facilitating appropriate use of confidential patient information for purposes beyond direct patient care.

Specific consent will be sought when researchers wish to use any information that would identify you, collect data with the intention to reuse this data in further research, or when data will be share outside Moorfields Eye Hospital.

The privacy of your personal data is paramount and will not be disclosed unless there is a justified purpose for doing so.

We do not share your data with insurance companies or use it for marketing purposes.

• Your data may be shared with:
  Immediate project team who are authorised to work on the project and access the information.
• Collaborators at other organisations authorised to work on the project. This will be clearly identified in your information sheet.
• Our research may be audited and access to the data may be required. The Trust puts in place safeguards to ensure that audits are conducted in a secure and confidential manner.
• Official members carrying our regulatory inspections may need to access your data.

How we store your personal information

Your information is securely stored. We will only retain your personal information for as long as necessary to fulfil the research purposes we collected it for and archive it according to national retention periods clearly mentioned in each study documentation.

The Trust takes a robust approach to protecting the information it holds with dedicated storage areas for research data with controlled access.

Alongside these technical measures there are comprehensive and effective policies and processes in place to ensure that users and administrators of the Trust information are aware of their obligations and responsibilities for the data they have access to. By default, people are only granted access to the information they require to perform their duties. Training is provided to new staff joining the Trust and existing staff have training and expert advice available if needed.

Data retention

Your information will not be kept for longer than is necessary and is usually kept in an anonymised/deidentified format. The length of time for which we keep your data will depend on a number of factors including the importance of the data, the funding requirements, the nature of the study, and the requirements of the publisher. Details will be given in the patient information sheet for each project.

After anonymisation/deidentification your data may be stored and archived where it may be accessed by other researchers with permission from the Trust.

Improving care quality and clinical services

We will only use your personal information for the purposes set out above unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose or where there is another lawful basis for processing.

The quality of care that you enjoy is based on evidence derived from research. As a national and international centre of excellence, we undertake a lot of research at Moorfields so the care of tomorrow is the best it can be. We might invite you to take part in research, but we will never use your personal identifiable data in research without your permission. To find out more, or to register your choice to opt-out, please visit www.nhs.uk/your-nhs-data-matters. On this web page you will:

• See what is meant by confidential patient information
• Find examples of when confidential patient information is used for individual care and examples of when it is used for purposes beyond individual care
• Find out more about the benefits of sharing data
• Understand more about who uses the data
• Find out how your data is protected
• Be able to access the system to view, set or change your opt-out setting
• Find the contact telephone number if you want to know any more or to set/change your opt-out by phone
• See the situations where the opt-out does not apply

You can also find out more about how patient information is used for research at https://www.hra.nhs.uk/

You can change your mind about your choice at any time, you can also opt-in to research studies of your choice. 

You do have the ability to opt-into local MEH research projects and more information can be found here Research opportunities at Moorfields (ROAM) | Moorfields Eye Hospital NHS Foundation Trust

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. However, where information is part of your health record, we are obliged to keep records of any changes, and so the incorrect information may not be erased, but instead would be crossed out with the correct information entered with a note.

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. But as we cannot provide care if we cannot process your information, it is unlikely that we will be able to comply with your request.

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 at the address below if you wish to make a request.

Policy date: April 2023

Last updated: January 2025