Transparency Notice

What is this notice about?

This long COVID Clinic is helping medical research by providing certain information (data) from patients’ medical records to the LOCOMOTION Study.

The LOCOMOTION Study is one of several studies in the UK carrying out research into long COVID.

Ten long COVID Clinics in the UK are taking part in the LOCOMOTION Study and they will be asking patients directly if they would like to be part of it too.

In addition, for some of the work LOCOMOTION is carrying out, we need to get information from the medical records of thousands of patients in the UK, but it would take a very long time to contact every single patient to ask for their permission to do that, and all of our research has to be finished within a certain amount of time.

This happens a lot in health research and there are rules in place that we have to follow to ensure that patient information is kept confidential and secure. We also have to make certain information available to help let patients know that we are using data from medical records for our study and that you can decide not to take part (opt-out) if you do not want your health information used.

This document is called a ‘Transparency Notice’ and it provides you with the relevant information, in line with General Data Protection Regulation (GDPR).

About LOCOMOTION

The LOCOMOTION research programme has three main aims:

Create a network of long COVID clinics and services across the UK in order to learn from each other, help identify the best ways to provide medical care to people with long COVID and produce guidance on long COVID for other healthcare providers.
Improve the way long COVID clinics/services work in order to ensure all patients have equal access to a clinic and get cost-effective care.
Look at what causes long COVID symptoms to fluctuate in patients, and study self-management of triggers and symptoms at home.

The LOCOMOTION Study is funded by the NHS National Institute for Health Research and sponsored by the University of Leeds.

What data will we use?

To help us achieve these aims, the study will use electronic health records from GP practices participating in research (the Royal College of General Practitioners Research and Surveillance network), information linked to hospital referrals and data from long COVID Clinics/Services.

Information that the LOCOMOTION Study will use includes:

When did you get Covid-19;
What symptoms do you have;
What medical investigations/tests have you had;
What specialists have you been referred to and when.

How we will protect your information

Any data in the medical records that we obtain that can identify the patient will firstly have that identifying information replaced with a code unique for that patient, which will enable us to link up data about the patient from different locations, for example data held by a long COVID Clinic and by a GP practice.

This data is held securely in a database at the University of Oxford before being completely anonymised and transferred to Imperial College NHS Trust, where research staff at Imperial College and other sites taking part in the LOCOMOTION study have access to it for the work to be conducted.

To carry out this research, the LOCOMOTION Study had to obtain something called ‘ethical approval’ for the work to be done. This means a detailed plan of the study had to be checked to ensure everything the study is going to do is carried out properly, safely and is in the best interests of patients.

The plan for the LOCOMOTION Study has been approved ethically by the Health Research Authority (HRA, which protects the interests of patients in health research) and the Yorkshire and Humber Leeds Bradford Research Ethics Committee (REC Ref. 21/YH/0276). Study registration details are available at ClinicalTrials.gov: NCT05057260; ISRCTN15022307.

Data Retention

All data is retained in anonymised form for 10 years.

Data Controller

Data Controllers have overall control over how and why your personal data are used. Under data protections laws, we have to let you know who the Data Controllers are.

For the LOCOMOTION Study, the Controllers are The University of Leeds and Imperial College NHS Trust.

Contacting the Data Protection Office at the University of Leeds:

Email: dpo@leeds.ac.uk
Post: Data Protection Officer, The Secretariat, University of Leeds, E C Stoner Building 11.72, Leeds, LS2 9JT

Contacting the Data Protection Office at Imperial College NHS Trust:

Email: imperial.dpo@nhs.net
Post: Philip Robinson (Data Protection Officer), 8th Floor of Salton House, ICT Division, St Mary's Hospital, Praed Street, London, W2 1NY

Legal basis for using your data

Under data protection laws, we must have a valid, lawful reason to use your health data. In the LOCOMOTION Study, we have done this by:

Obtaining consent from individual patients in a participating long COVID Clinic/Service;
If we use patient data obtained before the study started recruiting people, or data from medical practices where patients are not being asked individually to join the study, we have approval (section 251 support) from the Health Research Authority on the recommendation of the Confidentiality Advisory Group (an independent body that protects and advises on the use of confidential patient data).

Your Rights

Data protection laws in the UK give people a number of rights concerning their personal data, depending on what work is being conducted.

If you require further details, each link below will take you to the Information Commissioner’s Office website:

We want you to feel confident that we look after everyone’s personal data in line with the law. If you have any questions, please get in touch with us at: Locomotion@leeds.ac.uk

Your Choices

In addition to following the data protection laws, to help ensure you have as much control as possible over the use of your data, the LOCOMOTION Study follows NHS Digital’s guidance for enabling patients to choose to opt-out of their data being used for research via the National Data Opt-out. You can read about this and make your choice to opt-out here.

If you are a patient at one of the long COVID clinics involved in the LOCOMOTION study, and you would like to only opt-out of your data from the long COVID clinic being used specifically for the LOCOMOTION study, then please contact your long COVID clinic by the deadline stated below. It will not be possible for opt-out requests after the deadline to be actioned, as data will have been anonymised by this date.

Opt-out Deadlines:

Birmingham - 19th February 2023
Cardiff - 23rd November 2022
Hertfordshire - 17th November 2022
Imperial - 28th February 2023
Leeds - 4th November 2022
Leicester - 19th February 2023
Newcastle - 17th November 2022
Oxford - 4th November 2022
Salford - 4th November 2022

Requesting a copy of your information

If you would like to request a copy of your personal data that the LOCOMOTION Study is processing, then please contact us:

Email: Locomotion@leeds.ac.uk
Post: Chief Investigator NIHR LOCOMOTION study, Academic Department of Rehabilitation Medicine, Floor D, Martin Wing, Leeds General Infirmary, Leeds LS1 3EX

When we store and use personal data collected from medical care and treatment records, it is mostly held as codes rather than words. We will provide a list of codes used to help you understand the information we give you.

If we require any additional information from you to help us deal with your request, we will let you know within 30 days. If we cannot provide information you have asked for, we will tell you what we cannot provide and why.

Complaints

If you wish to raise a complaint concerning our data processing activity, please contact us:

Email: Locomotion@leeds.ac.uk
Post: Chief Investigator NIHR LOCOMOTION study, Academic Department of Rehabilitation Medicine, Floor D, Martin Wing, Leeds General Infirmary, Leeds, LS1 3EX

You have the right to raise a concern with the Information Commissioner’s Office at any time.