Respiratory Futures spoke to Dr Lisa Spencer to learn more about the BTS ILD Quality Dashboard, how it works and the value it provides.
Can you tell us a little more about the Quality Dashboard for ILD?
The NHS England (NHSE) Quality dashboards for ILD are relevant only to ILD Specialised Services which were set up in England from 2014 onwards. Specialised ILD services in England are mandated to provide data on their services. It is part of the contract agreed between the hospital providing the service and NHSE. Most NHSE specialised services have the same requirement. NHSE is ‘The Commissioner’ for Specialised ILD Services. They have a responsibility to monitor standards in these services. The dashboards are the way they can assess how services are performing.
Although only Specialised ILD Services in England are required to submit data to NHSE dashboards, the tool used to collate dashboard data - the UK ILD Registry run by BTS is available to all sites. It has much wider clinical uses than just collecting dashboard data. Hospitals in the devolved nations, as well as district general hospitals in England, are able to use the BTS UK ILD Registry
The NHSE dashboard items required for submission were rewritten a few years ago and it asks services the following 8 questions:
- What percentage of all your new IPF referrals were discussed at your ILD MDT within 2 months of first assessment in the service.
- What percentage of all your new IPF referrals were offered or received ILD Specialist Nurse input within 2 weeks of their first attendance in the service.
- What percentage of all your new IPF referrals were assessed for their needs for pulmonary rehabilitation.
- What percentage of all your new IPF referrals were assessed for their needs for ambulatory and long-term oxygen therapy.
- What percentage of all your new IPF referrals were assessed for their needs for symptom management and/or palliative care input for their IPF.
- What is the average wait (in weeks) for new IPF referrals to be seen in the specialist ILD clinic from the date the referral letter was received at the centre
- Has your centre recruited patients into an ILD clinical trial in last 12 months? (an overarching yes or no question, not per patient)
- What percentage of your new IPF referrals have had data added to the BTS IPF Registry?
Why were these items chosen?
IPF was chosen to be used as a ‘marker’ disease to represent what was happening in specialised ILD services. It is one of the commonest disease types seen, Quality Standards had already been published and it is the disease with the most guidelines and likely one of the most accurately diagnosed. It was also the only disease at the time eligible for high-cost drugs (this has now changed due to broadening of the guidelines about who can access anti fibrotic drugs). Due to staffing shortages in ILD services in general we could not expect ILD centres to collect data on all cases going through their services. IPF was thus selected as the ‘representative disease’.
The final 8 items chosen reflect important themes outlined in the NICE Quality Standards for IPF care published in 2015 (QS79) along with a few additional points. Waits in services were felt to be important to monitor particularly by patients, as well as clinical trial activity because often only specialised centres regularly offer access to clinical trials in the field of ILD. Clinical trial activity is to be encouraged.
We tried to keep the number of questions as low as possible as we were conscious of the burden of data collection, though a certain number were needed to ensure standards were being delivered. It was a delicate balance. The question set was determined by a multi-professional panel including ILD doctors and nurses, patient representatives, ILD charities and BTS via the BTS ILD Registry Steering Group. It was hotly debated and discussed until a consensus was reached, balancing ease of data collection with the need to collect meaningful benchmarking data.
How is the UK ILD Registry helping to collect data to support this?
Through discussions with NHSE it was agreed that the majority of the data items required for the dashboard could be collected through the UK IPF Registry, run by BTS. This added lots of positives to the system including the ability to provide centres with their data and benchmark it against combined, anonymised national data. It also facilitates data sharing and widens research possibilities between centres (as their data are collected on same system - with appropriate ethics agreements in place). It would also provide a national dataset in IPF. UK national data in ILD is generally sparse and is an area we need to improve.
Sites use the UK ILD Registry to collate the information they need, then they submit the information directly to NHSE themselves. So sites submit data relating to their patients into the Registry, then the teams in the hospital/trust can download a report at any time which gives them all the information they need for six of the eight dashboard items. Just two items aren’t collated through the Registry: the percentage of new IPF referrals added to the Registry in the reporting period, and whether the centre is actively recruiting patients into ILD clinical trials.
NHSE expect its specialised ILD services to capture dashboard items on a minimum of 70% of their new IPF referrals seen in each year. This is to ensure that their data truly reflects the majority of the care they are delivering.
The Registry includes patients with any kind of fibrosing ILD. Does that mean the dashboard does too?
No - NHSE dashboards only require data from IPF cohorts seen at specialist centres. That data collection is mandatory now, for NHSE to monitor service standards, but NHSE do not yet mandate for data about other types of ILD. This is where the Registry and dashboard systems separate in their function and use.
The UK ILD Registry offers centres a much wider data collection tool now. Data about many types of ILD can now be collected via the BTS Registry system. The BTS Registry system is also open to all respiratory doctors or relevant health care professionals seeing ILD patients not just specialised ILD centres. However, you do have to register for the Registry first. To do so contact Registry@brit-thoracic.org.uk
When does this come into effect? Which centres are involved?
It was mandated in April 2022 that specialised ILD centres in England should use the UK Registry to collect dashboard item data on their IPF patients. In summer 2022, all ILD specialist centres in England were invited to a meeting led by the national commissioner to explain the process. However, due to the impact of the COVID pandemic on the NHS, NHSE dashboard data collection was suspended for a while but it has now reopened. Data is due now from October to December 2022. From the Registry system centres can summarise their data and either submit it themselves if approved to do so or pass it to managers to upload their data to the NHSE ILD dashboard site.
Starting from April 2023 dashboard data will be collected every six months (not quarterly). The intention is to reduce the burden of data collection while ensuring the information entered is still up to date and relevant.
What happens if my centre doesn’t meet the targets set in the dashboard?
If a service is not providing data, or if its data sits outside the acceptable ranges to meet the standards expected by NHSE, the expectation is that local commissioners can make contact with services to assess what is happening and support them in getting to where they might need to be. Lots of factors may influence how a service is performing, and that local assessment of any issues is important to provide the right support. The aim is to get the centre back to where it is supposed to be not to try and ‘close’ centres – so any extra input is intended to be supportive rather than punitive. Commissioner input can help get centres back on track, delivering the best care they can.
How can centres use the dashboard data to drive change and make the case for support?
There are two likely scenarios here. One is that a centre does not submit its data because they do not have the resource to do so. Clearly there is a time investment to consent patients to the Registry, collect and electronically submit data. Many ILD specialist services raise that they do not have appropriate admin support for example to deliver a high standard, well-managed service which includes data submission. If centres do not have the resource they should speak to their managers first and discuss how staffing can be provided. The hospital providing the ILD specialist service has already committed to a contract with NHSE which includes providing dashboard data back to NHSE so services can be monitored appropriately. That loop needs to be closed. If hospital teams cannot move things forward via this route we advise that you speak to your local commissioning teams to see if they can help resolve the issue. The local commissioning team have a responsibility to monitor the centre and they can only do that if data is submitted. So there is a driver there for them to have data submission too.
The second scenario is that a centre submits data but is not hitting the targets set. How this is managed depends on which item(s) are not hitting the targets. If the IPF standards of care (NICE QS79) for example are not reliably being met for each patient then data collection has allowed the centre to recognise this. They can then assess what in the service may need to be changed in order to ensure standards of care are delivered for each patient. Where in their system is it being missed? What can be done to alter this? This process should then lead to improved care for patients. Standards of care include items like:
- Having an ILD MDT discussion of the case – do they have a coordinator to ensure all cases get discussed? or is the service set up atypically, maybe with MDTs held before the patient is referred to the prescribing centre?;
- Facilitating patients having access to an ILD nurse – do they have enough nurses? are they allowed to focus on the right parts of the pathway?;
- Checking the patients’ needs for pulmonary rehabilitation, oxygen and symptom management – is a check list used to ensure these points are assessed? who is responsible for assessing them? is there appropriate access to these services for patients?;
- If service waits are long, why? – where is the system is the wait occurring? does the service have enough staff and slots to see number of referrals? are there delays to getting access to MDT discussion, etc.?
Without collecting this data services may not even know they fall below meeting the standards of care expected for every patient. So collecting it will either highlight that standards are being met and teams can be justifiably proud, or it may show where improvement is needed and allow action to be taken to improve care. This has to be a good thing all round for our patients and our teams.
If you lead a specialised service like ILD there is quite a lot to manage. If service leads have not already got time in their job plans to actually lead and manage their service we advise you discuss this with your clinical directors. This may allow you time and head space to deliver on some of the points above.