National data opt-out
and the National Joint Registry
Patient confidentiality and data security is very important to the NJR and we ask each patient to give their permission (consent) to have their personal details confidentially recorded with their operation details on the registry. This enables the NJR to be more effective in our role in protecting patient safety and in understanding more about joint replacement surgery and patient outcomes. To date around 3.5 million patient records have been included in the registry, with more than 9 out of 10 patients having joint replacement surgery consenting to have their data recorded.
All data is held securely in our ISO27001 accredited data centre and access to any identifiable information is strictly controlled. Our newly updated NJR patient information leaflet explains consent and also what happens if a patient does not consent, or if it is not known whether consent has been given or not. We would emphasise that a patient’s treatment would never be affected by their choice to consent to share their data. We also provide information on how to withdraw consent should any patient change their mind on this, which can be done at any time.
As the NJR has exemption from the national data opt-out service, any patient who chooses not to share their personal data with the NJR needs to register that decision with us or with the hospital treating them. We have recently updated our patient information materials to include this information.
The NJR involves patients in decision-making at all levels of our work, including patient membership on our Steering Committee, which oversees all decisions and processes about how NJR data can be used. Our experienced patient representatives help us to ensure that we consider patient benefit in the decisions that we make about where data can be used for increasing our understanding through research and data analysis.
Using this valuable pool of records the National Joint Registry is able to monitor, analyse and report on surgeon, hospital and implant performance outcomes in joint replacement surgery in a continuous drive to improve service quality and enable research analysis, to ultimately improve patient outcomes.
Through our work analysing the records we have already recorded on the registry, we are able to provide information and evidence to:
- Empower patients by enabling them to find out more about the implants available to them.
- Help surgeons to choose the most suitable medical implants for their patients.
- Improve patient safety by showing how well medical implants, surgeons and hospitals perform and take action on advising improvement processes, where this is needed.
- Give hospitals, surgeons and implant manufacturers feedback about their performance to help them to ultimately improve patient outcomes and improve service quality.
- Help surgeons quickly decide whether patients need to be recalled to hospital if there are any reported problems with any specific medical device implants.
Gillian Coward, NJR Steering Committee Member and Patient Representative said of our work,
“The NJR was set up in 2002 to improve safety for patients who have had joint replacement surgery. By routinely monitoring the performance of hospitals, surgeons and orthopaedic implants, the NJR works to improve outcomes and identify any reasons why patients might need to be seen again at their hospitals. To do this work, the NJR needs to collect complete and representative patient information. I welcome this new information material which shows the various ways that patient data is being used as part of the registry’s important work”
Mr Tim Wilton, Orthopaedic Surgeon and NJR Medical Director said,
“The NJR has been a great supporter of patient safety for the past two decades and works tirelessly to drive up standards of care. We are enormously grateful for the nearly 3.5 million patients who have contributed their data to the registry to support out work. We maintain high standards of confidentiality and security to ensure that data about patients is used appropriately. The new patient information leaflet sets out how the NJR uses data for the benefit of everyone having a joint replacement operation.”