What about patients who do not have an email address?
In 2014, a great deal of the UK population are now internet reliant. If for some reason your patient does not have an email address, you can download all forms in paper versions and give/send them to each patient to complete. This obviously will require manual data entry.
Is any patient data transferred out of the UK?
No. All data will be stored in the UK by a company (Six Degrees, contracted by Amplitude Clinical Ltd.) who are ISO accredited.
Will any patient data be shared with a third party outside of the UK NLR?
No. All data will be overseen and managed by the NLR Steering Group in the UK. A company will be employed to analyse this data, but this will again be within the UK.
Who ''owns'' the data?
We (as surgeons) do not own the data. It is managed by ourselves and Amplitude Clinical Ltd. but it remains the Trusts data. Hospital Information and Governance departments need to consent to it being transferred and stored on a secure server. As surgeons we also seek the patients agreement to us doing this with data which is about them but not owned by them.
Does the Trust have access to all the data that is inputted into the NLR by the Trust?
Yes, whatever data goes in can be analysed in various reports.
With regards to the dashboard reports – is this something that the NLR supply? If so, what is the frequency of these reports?
In common with other registries, the NLR will provide annual reports. We are working on dashboard type reports for common enquires that are real time.
When a user is pushed to the registry (from a Bluespier system) is the email immediately sent to the patient or is there a time delay?
A patient only gets emailed when the op date is known and entered. The patient gets an email 2 weeks before their operation date so their scores are relevant. They cannot enter without their name being registered on the registry.
How long is data being held?
Data will be held for long term as appropriate to a national registry.
What time interval data is being collected?
Regarding patient input, patients enter their scores both preop and post op (1,2,5 years) via the web.
What if we already have a Bluespier system?
The National Ligament Registry works directly with clinical information systems from Bluespier. If you have Bluespier installed in your Trust, then data can be directly uploaded to avoids duplication. Speak to your Bluespier Account Manager or your Bluespier Super User.
I am linked to more than one consultant - how do I switch?
Click on the consultant's name at the top of the screen to display a drop down list of others you can switch to - quick and easy!
How do I add a new operation template?
When you add an operation note, the option to 'add new template' sits next to templates already created.
Does my secretary and other admin staff have a different level of access to me?
Yes. They can only enter patient demographic data and add patients to your operating list.
How do I add a patient on to the registry who has already had their operation?
You can do this by adding the patient in the normal way. When adding the patient to worklist, choose the operating list option for the current day. You do not need to specify the exact date the operation was undertaken as that can be changed when entering the operation data.
The NLR has been successfully gathering patient data since 2013, after it was launched at BASK.
There are currently:
Number of active users: 712
Number of Pathways: 12098
Total Number of Registered Patients: 11796
(includes patients awaiting surgery)