Research

Purpose  

Clinical research, mainly clinical trials of medicines, is the key focus of our research activity. Our world class investigators and highly trained clinical research staff allow us to attract and host the latest national and international clinical trials and deliver them to international regulatory and ethical standards. 

Find out more about our research performance. 

We work with commercial, academic, medical charities, NHS and government department sponsors to deliver over 150 clinical studies at any one time.  

Our research activity works across a range areas. Our key strengths include: 

  • oncology 
  • haematology 
  • rheumatology 
  • cardiology 
  • infectious diseases 
  • transplant and immunology 
  • hepatology 
  • renal medicine 
  • gastroenterology 
  • dermatology 
  • child health 

We also host a significant academic research programme in collaboration with our main academic partner, University College London Royal Free Campus (UCLR). 

We use your personal information to carry out health and social care research in the public interest. This means that we have to demonstrate that our research serves the society as a whole, for example by improving existing services or introducing new treatments. 

You are not legally or contractually obliged to supply us with your personal information or to agree that information we already hold about you for care purposes, may be used for research purposes. 

Should you not wish information about you to be used for research, you can opt out via the national data opt-out programme, or by speaking to the clinical team who are treating you and informing them of your wishes. 

We will not: 

  • share your identifiable data with third parties for marketing purposes 
  • sell your identifiable data 

Information we collect 

Where you have agreed to the use of your information in a particular research project, the participant information leaflet would have been given to you as part of the process. This document will tell you what types of personal information we will use in connection with the specific research study or project you are participating in and (where applicable) its sources. 

We will often get the necessary information directly from you. In other cases, we might already hold the required information due to the healthcare we provide to you. For information we are likely to already hold about you due to the care we provide, please refer to our main privacy notice for Direct Care. 

In situations where it has been impracticable to obtain your agreement, we will have sought approval from the Secretary of State via the Confidentiality Advisory Group under section 251 of the National Health Service Act 2006 (‘CAG approval’). The Confidentiality Advisory Group provides independent advice on specific research projects which will use confidential medical information. 

Certain research studies also have to be approved by the Research Ethics Committees (REC) which is another independent group which ensures that all our research is ethical. 

In some instances, we will apply to the Health Research Authority (HRA) who may approve that we can use pseudonymised information for research. Pseudonymised information is personal data which has had the identifiers removed, for example your name replaced with a research number and your data of birth changed an age. Where there are other fields which will be able to identify you, these will also be appropriately pseudonymised. 

Our lawful basis 

In order to legally be able to process your personal data, we must have a lawful basis under the United Kingdom General Data Protection Regulation. Our lawful basis for the purpose of processing data in our stated purpose is: 

UK GDPR 

Article 6 (1)(e) processing is necessary for the performance of a task carried out in the public interest. 

Article 9 (2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes inaccordancewithArticle89(1) [(as supplemented by section 19 of the 2018 Act)] based on domestic law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. 

By processing your health data, we will also recognise your rights established under English case law, collectively known as the “Common Law Duty of Confidentiality”. This means that we only use your personal data in ways that would reasonably be expected, including where we share your information with your consent or where we can reasonably expect that you would consent in order to provide you with care, or for reasons of substantial public interest, or where you cannot be identified from the information. 

Who we share your information with 

When you agree to take part in a research study, the information about your health and care may be provided to researchers running research studies at the trust and other third-party organisations. These external organisations may be non-commercial partners such as universities or other hospitals or commercial companies involved in health and care research in this country or abroad. For further details of our commercial and non-commercial partners can be found here. 

Our processors  

Processors are organisations who act on our behalf and under our authority. They carry out some of the technical processes, for example, providing a system that stores information. We do not allow our Processors to use your information for their own purposes or allow them to link this to other personal data they may. 

The category of our processors are organisations who: 

  • Provide of our IT systems; 
  • Provide of some of our medical devices; and,  
  • Dispose of confidential waste (paper records, laptops or other IT equipment). 
  • Provide some of our clinical service under contract with us. 

How long will we keep your data 

We will keep your personal data in line with the retention periods detailed in the NHS retention schedule.  

Your rights 

Data protection laws give you a number of rights over your personal data. These rights are detailed below. However, for the purpose of research your rights to access, object, change, transfer and or delete/erase your information are limited. This is because we need to manage the data in specific ways to ensure the research we conduct is reliable and accurate, and that we are accountable to those organisations which fund and monitor our research. 

The right to be informed 

The trust is required by law to provide you with information about how it collects and uses your personal data. The trust, by way of this privacy notice is providing you with this information. 

The right of access 

You have the right to access the information we hold about you. You can access some information, such as information from your hospital record, hospital appointments, test results and messages from My RFL Care patient portal. You can find out more information on how to do this here. To access any other personal information we hold, please see our guidance on health records or contact the acess team at rf-tr.AccessRequests@nhs.net.  

For the purpose of research your rights to access, are limited. This is because we need to manage the data in specific ways to ensure the research we conduct is reliable and accurate, and that we are accountable to those organisations which fund and monitor our research. 

The right to rectification 

You have the right to have inaccurate information about you corrected or incomplete information completed. This is not that same as disagreeing with a clinical observation or opinion and asking for this to be changed. If you disagree with a clinical opinion you should discuss this with the team who’s care you are under. To update your basic contact details or address, please contact the patient advice and liaison (PALS) team. 

To request any other inaccurate information corrected please contact rf-tr.AccessRequests@nhs.net. 

The right to erasure 

The right to erasure is also known as ‘the right to be forgotten’. The right is not absolute and only applies in certain circumstances. 

If you withdraw your consent to participate in a research project, we may not remove all your data. We may keep the information about you that we have already used for a particular research project to ensure research integrity is maintained in the public’s interest and that publically funded research meets is goals. To safeguard your rights, we will strive to use the minimum personal information possible following your withdrawal. 

To exercise this right, please contact rf-tr.AccessRequests@nhs.net. 

The right to restrict processing 

You have the right to restrict the processing of your personal data in certain circumstances. This means that you can limit the way we use your data. This is an alternative to requesting the erasure of your data. The right is not absolute and only applies in certain circumstances. 

This is limited to:  

  • Where you contest the accuracy of your personal data and we are verifying the accuracy; or, 
  • We no longer need the personal data, but you need us to keep it in order to establish, exercise or defend a legal claim. 

To exercise this right, please contact mailto:rf-tr.AccessRequests@nhs.net. 

The right to data portability 

The right to data portability does not apply to the processing of your personal data for this purpose. 

The right to object 

You have the right to object to the processing of your personal data at any time. This effectively allows you to stop or prevent us from processing your personal data. 

An objection may be in relation to all of the personal data we hold about you or only to specific information.  

The right to object only applies in certain circumstances. You must give specific reasons why you are objecting to the processing of your data. These reasons should be based upon your particular situation. 

In these circumstances, your right to object is not an absolute right, and we do not need to comply if we can demonstrate compelling legitimate grounds for the processing, which override your interests, rights and freedoms. To exercise this right, please contact mailto:rf-tr.AccessRequests@nhs.net. 

Rights in relation to automated decision making and profiling 

The trust’s clinical staff use tools to help assist in you diagnoses and treatment; However, the results are always reviewed and interpreted by an appropriately trained clinician who will have the final say in your diagnoses and treatment. The trust does not make any solely automated decisions about you.