At the University of Warwick we use personally-identifiable information to conduct research to improve health, care and services. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you chose to withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you wish to raise a complaint on how we have handled your personal data please contact the University of Warwick Data Protection Officer. The Data Protection Officer and Data Controller for this research at the University of Warwick can be contacted at infocompliance@warwick.ac.uk. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Notice to Patients who had a total knee replacement in 2003 in the United Kingdom within the National Health Service

If you had a total knee replacement in 2003 in the United Kingdom and agreed to participate in the National Joint Registry (NJR) data collection process (www.njrcentre.org.uk) then the University of Warwick is using your data for research purposes.

NJR data is controlled by the Healthcare Quality Improvement Partnership (HQIP) who acts as ‘host’ to the NJR. NJR data is processed by Northgate Public Services (UK) Ltd (NPS). NPS is contracted by HQIP to provide the data collection, aggregation, reporting and storage services for the NJR.

Data that the NJR and NPS hold about you and your knee replacement surgery has been linked to routinely collected National Health Service (NHS) Hospital Episode Statistic (HES) data held by NHS Digital (https://digital.nhs.uk). Hospital Episodes Statistics (HES) datasets contain information on hospital episodes that take place in hospitals and in outpatient appointments in England

The two databases (HES and NJR) have been linked by NHS Digital using personally identifiable information including your NHS number, date of birth, gender and postcode. NHS Digital will then pseudonymise the two linked databases, by removing the personal identifiers and adding the unique study identifier shared with them by NJR, before securely sending the data to the University of Warwick.

Pseudonymised data means that there is less risk of identifying individuals within the pseudonymised dataset alone however if it is combined with other information it could be made identifiable.

Although your data is being used for research by the University of Warwick, we will only ever have access to your pseudonymised data. We are using your pseudonymised information to find out how long you were in hospital after your surgery and if you had any complications up to 12 months after your surgery. This research project is funded by National Institute for Health Research (www.nihr.ac.uk) and if you are interested further information is available here - http://bmjopen.bmj.com/content/8/4/e022067.

Under Section 251 of the 2006 NHS act, the Confidential Advisory Group (CAG, https://www.hra.nhs.uk/about-us/committees-and-services/confidentiality-advisory-group/) have given approval (Ref 17/CAG/0182) for us to use your data without your explicit consent for medical research. The research has also been approved by the National Research Ethics Service (NRES, https://www.hra.nhs.uk/about-us/committees-and-services/res-and-recs/research-ethics-service/), (Ref 15/WM/0455).

Under General Data Protection Regulations (GDPR) our legal basis for:

Processing your data under article 6(1) (e) is “a public task”. The processing is necessary for us to perform a task in the public interest.Processing your special category (health) data under article 9(2) (j) is “processing is necessary for the purposes of preventive medicine”.

If you believe this research study is likely to involve your data and have any objection to your data being used for this purpose then please contact us at safe-tkr@warwick.ac.uk and we can either withdraw or delete your data from the study. We will hold your data for 5 years and it will be stored on secure computers at the University of Warwick. Only members of the study team will have access to the data.

Making a Complaint or raising a concern

If you wish to raise a complaint on how we have handled your personal data, you can contact: The Data Protection Officer and Data Controller for this research at the University of Warwick. They can be contacted at infocompliance@warwick.ac.uk. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO) - https://ico.org.uk/make-a-complaint/

Other relevant contacts:

1. NHS Digital

Data Protection Officer for NHS digital can be contacted via enquires@nhsdigital.nhs.uk

2. National Joint Registry and Northgate Services

Data Protection Officer for NJR data can be contacted at Data.Protection@hqip.org.uk

If you wish to either obtain data held by the NJR or withdraw consent you should contact the NJR using the following contact details: enquiries@njrcentre.org.uk or telephone 0845 345 9991

The NJR Centre, c/o Northgate Public Services Peoplebuilding 2 Maylands Avenue, Hemel Hempstead, HP2 4NW