Patients’ personal details (surname, forename, date of birth, home postcode and NHS/national patient number) are an important part of the NJR. By capturing this information we are able to:
- Help identify patients who have received specific implants that are performing poorly
- Link patients' primary and revision procedures, which enables the NJR to determine how long different types of implants last (survivability) - this is done via the NHS/national patient number)
- Invite patients to take part in any subsequent feedback process so that patient satisfaction can be assessed and recorded.
Patients must give their consent for their personal data to be recorded on the NJR. The NJR consent form should be signed by the same person signing the operation consent form.
All hip, knee, ankle, elbow and shoulder replacement patients should be given the opportunity to participate in the NJR.
Collecting patient consent
Ensuring that patient consent is recorded on submissions to the NJR is an issue in some hospitals, with the consent form not being available to some of the staff entering the data. In order to help overcome this issue and in addition to the available NJR patient consent forms, an approved 'short text' for obtaining NJR consent is also approved for use and can be added to local consent forms. This ensures that recorded NJR patient consent remains with patient notes and is not held on a separate piece of paper. The text is as follows:
"I have read and comprehended the Patient Information Leaflet and consent to my personal details being submitted to the National Joint Registry in the knowledge that they will only be disclosed in the public interest or in other circumstances permitted by law.
I have been assured and understand that by declining my consent my care and treatment will not be affected in any way."
While the new text will help some units to ensure that consent for the NJR is recorded, it is essential that during pre-assessment patients continue to be made aware of the NJR through the Patient Information Leaflets so that they understand what they are consenting to.
Information and advice about how to collect patient consent is provided in the ‘collecting patient consent’ area of this website.
Patient consent (Section 251 Exemption)
The NJR has dispensation to record patient details where the indication for patient consent is ‘Not recorded’. This dispensation is known as Section 251 Exemption (formerly Section 60) and is granted on an annual review basis. You will be advised, however, if this dispensation ever becomes no longer available.
The NJR application has been changed to allow patient details to be entered where ‘Don’t know’ is recorded for Patient Consent, which now ensures that all procedures recorded on the NJR for a single patient can be linked, improving the monitoring of implant performance. It is essential that patient consent is sought for all procedures submitted to NJR. If it is discovered subsequently that a patient either gave their consent or positively declined it please ensure that you inform the NJR Service Desk so that the appropriate changes can be made on the patient record.
Any queries regarding patient consent should be put to your NJR Regional Coordinator, the contact details of which can be obtained from the NJR Service Desk.
A letter from the NJR Centre explaining Section 251 Exemption is available on the right of this web page, under “Related Documents”.
Patient consent forms
As well as collecting patients’ consent, the NJR consent form also introduces the benefits of the NJR to the patient and explains how participation will benefit themselves and others. We recommend that you use this form to collect patient consent and to ensure that the patient is fully informed of the NJR’s purpose to help prevent misconceptions about the use of data.
The NJR Centre has received a number of completed patient consent forms. In most cases it has been because the patient has misunderstood that the copy they were given was intended for them to keep.
Staff should make it clear to patients that it is the hospital who will be entering the patient’s personal details into the NJR system. Patients do not need to send their personal details to the NJR Centre.
NJR patient consent forms should be held by the hospital as part of a patient’s record and be made available to the person who inputs the data.