Working for patients
The National Joint Registry exists to define, improve and maintain the quality of care of individuals receiving joint replacement surgery across the NHS and the independent healthcare sector. Hip, knee, ankle, elbow and shoulder joint replacements are common and highly successful operations that bring many patients relief from pain and improved mobility.
A number of people may at some time in the future need another operation on the same joint. This may occur for a variety of reasons, most commonly because the joint implant has worn out. There are many different types of hip, knee, ankle, elbow and shoulder implants, many of which do not have data on their long-term effectiveness.
To further improve the success of this surgery, the Department of Health and the Welsh Government set up the National Joint Registry in 2002 to monitor the long-term effectiveness of implants and surgical technique. Northern Ireland joined in February 2013 and the Isle of Man in July 2015.
How does the NJR benefit patients?
The NJR helps:
- Surgeons choose the best artificial joints (implants) for patients
- Empower patients by helping them find out more about the implants available to them
- Improve patient safety by showing how well implants, surgeons and hospitals perform and take action where it is needed
- Give hospitals, surgeons and implant manufacturers feedback about their performance to help them improve patient care
- Help surgeons quickly decide whether patients need to return to hospital if implant problems are found
About the information and how it is used
In order for the NJR to be effective in its role, it requires both the details of the operation and those of the patient. It means that the NJR is able to link you to the implant(s) you receive during the procedure, as well as linking any future joint implant surgery you may have later on in your life. This combination of information for all patients (now more than three million so far) means we can measure how well different implants, surgeons and hospitals are performing. If the performance of any implant is later identified as being a problem, having your personal details in the NJR will make it easier for the hospital to notify you.
Giving your consent is voluntary and you should be asked by your hospital if you would like to give your consent. At the same time you will be shown an NJR patient consent form. Declining your consent will not affect the care you receive and you can withdraw your consent to have your personal details held on the NJR at any time by contacting NJR Centre.
Recording your personal details will also give the NJR the opportunity to invite you to participate in a patient feedback survey.
The survey will give you the chance to express your views on whether your quality of life has been improved by the surgery your received.
Operation and patient information in the NJR may be used for medical research. The purpose of this research is to improve our understanding and treatment of joint problems. The majority of our research uses only anonymised information that means it is impossible to identify individuals. From time to time researchers may wish to gather further information. In these cases we would seek your approval prior to disclosing your contact details. You do not have to take part in any research study you are invited to take part in and saying no does not affect the care you receive.
Please be reassured that the storage, release and use of this data are subject to very strict controls. You can find examples of how we use data for research by reviewing the Research library.
NJR data and other healthcare information
Operation and patient information in the NJR is used to link to other healthcare information (for example, Hospital Episode Statistics data and ONS data). It is also analysed and made available to surgeons, hospitals and manufacturers – this is without any of your personal details – as part of our feedback services. Doing this improves the NJR’s ability to monitor patient safety and patient outcomes. It also means that people and organisations involved in improving joint replacement surgery can better understand and develop improved or more cost-effective medical treatments.
How secure are my personal details?
Your personal data is treated as confidential at all times. The NJR uses an electronic system for data collection. The data is securely coded for transfer to a central database. This avoids sending paper records through the post and ensures maximum data security.
Your personal information will not be used outside of the NJR. Procedures are in place to protect your information and keep it confidential. If you wish, you can obtain a copy of your own record in accordance with the Data Protection Act (2018) and the General Data Protection Regulation (2018). Please contact the NJR Centre for further information.