HTN got in touch with the Patient Experience Library team and its directors, Anthony McQuillan and Miles Sibley, to find out more about their new waiting list tool, how the data is sourced and updated, and the benefits it can provide.
The launch of the online database, which allows users to select from NHS England patient categories and different stages of patient journeys, before comparing the waiting time results in up to 10 trusts at once, has coincided with a big moment for data in the industry.
Many trusts, industry partners and research institutions have been increasingly turning towards patient data – or platforming their existing projects – since the start of the COVID-19 pandemic, as public appetite to view and understand datasets has also grown on the back of the popularity of the UK government’s COVID data dashboard. While, few issues are more topical at the moment than waiting times.
“NHS waiting lists are a major public concern”, Library Director Miles said upon the announcement. “For individual patients, the feeling of being stuck on a waiting list is very stressful. It has been far too difficult for patients to find out what the waiting times are for the treatments they need. So we decided to do something about that.”
“Waiting list data has not been hidden for all these years for any good practical reason”, he added. “Our waiting list tool shows that it is entirely feasible to present the data in ways that anyone can understand. Tools like these can offer important insights to integrated care systems. And they should be a basic part of a person-centred NHS.”
Hosted and owned by Glenstall IT, the Patient Experience Library receives no revenue, or funding from the government; for Anthony and Miles, who previously worked together at an environmental charity, it’s instead a “labour of love”.
“I started to work with Healthwatch, which is a Patient Voice organisation across England,” Miles told HTN. “While I was there, I realised there’s a heck of a lot of evidence gathering going on for patient experience and public involvement in healthcare; nobody seemed to be gathering all this evidence and putting it all together in one place.”
This formed the basis of the national library, with Miles recruiting friend and IT whizz Anthony to join the cause. “At the time,” Miles added, “I did approach all of the national bodies – NHS England, Care Quality Commission, NHS Digital, NICE, NIHR…everybody said it sounded like a great idea but very difficult and very expensive. So, we decided to do it on our own.”
Around six years – and 70,000 documents – later, the duo realised they had to move from amassing evidence to helping people make sense of it. Which is how the idea for the patient waiting times tool was born.
“Over the last year-and-a-half we’ve started to develop these analytical tools to help people dig into the detail and easily see what’s there,” he said, with the waiting tool now taking centre stage.
“We’ve got some funding from the Joseph Rowntree Reform Trust to do this piece of work,” explained Anthony, “the response has shocked me. I wasn’t expecting that amount of interest – it’s just unbelievable. Our servers have never been as busy, it’s crazy.
“Miles is the one who steers where we’re going and comes up with all these crazy ideas that I then have to implement,” he added.
The duo hope that the tool will not only be useful for prospective patients to compare local trusts and understand the expected wait for their treatment pathways, but also as a resource for GPs and primary care providers, and for healthcare and technology leaders, to drill down into.
“I think the GPs hope this is going to be really handy,” Miles said, “because obviously, at the point of referral, patients want to know ‘ok, how long am I going to have to wait?’ and this is an instant way of seeing what the waiting times are…and also the tool enables them to print off a summary, which they can give to the patient.”
The new tool could also be utilised by ICSs, for more joined-up and integrated care planning, which Miles believes is “aided by joined-up data”. Leaders at management level will able to use the resource to “very, very quickly see, how services across the area are performing; who is doing well, who is not doing so well”, in addition to potentially helping manage patient flow.
The aim of widely sharing such data is also to encourage people to ask questions; rather than simply comparisons for comparison’s sake, or for pointing out who appears to be doing better or worse than others, it’s intended to be used as a tool for positive change and learning from one another.
“Going more into the policy level,” Miles said, “we know a big part of our audience is researchers and academics. This ability to very easily look at different services – at an ICS level or a national level – and to be able to see how one type of service like cardiology performs in relation to neurology. If you can see that one service consistently performs better than others, you can start asking questions about why – is it funding? Workforce? Or how they design their care pathways? My hope would be that those kinds of questions can now be asked.”
Of course, the COVID-19 pandemic and the care backlogs it has caused, also forms part of the thinking. “Again, if we can see that some trusts or some ICSs are starting to reduce their backlog more quickly than others, we cay say ‘what are they doing that’s working well?'”
Despite the ability to view how waiting times look in different parts of the country – and observe whether there is essentially a postcode lottery for different services – Anthony and Miles stress that their intention is not to “undermine confidence in the NHS – that’s the last thing we want”, but that “as we come out of COVID, we need a really grown-up dialogue between the public and the NHS about what’s going on.”
“The public are not just patients,” Miles commented, “we’re also tax payers and voters. It’s our NHS and we want to it do well. Having informed conversations is really important.”
The data displayed on the tool itself uses the most up-to-date information sourced from NHS England, which is published two months in arrears, meaning that while the data is not real-time, it is as relevant and recent as possible.
When the latest figures are published, Anthony takes 10-15 minutes to processes it into a format that the Patient Experience Library system can understand – but is looking at a way to automate this in the future.
“Ideally,” commented Miles, “we’d be doing this kind of work in partnership with NHS England, NHS Digital, NHSX. We’d be saying to them ‘we can help you with this, we can make your data much more accessible and understandable’ – not just to the general public but for health professionals, and save them such a lot of time.”
However, the Patient Experience Library team, allowed that, while they do find it difficult to have conversations with national bodies on the topic – and feel they could go “further and faster” if they did – the platform has had “huge feedback from individuals – not just clinicians but patient voice organisations, policy think-tanks and health charities.”
“We’re looking for constructive dialogue – that’s what we really want,” said Miles, re-emphasising their offer of partnership.
“Miles and I have knocked on so many doors over the years,” added Anthony, “I think it’s a wonderful organisation…[but] people don’t have time…it’s not a priority at a high enough level…if they’re spending time with us there is a cost associated to them…I don’t know if it’s going to change.”
Despite this, the Patient Experience Library is looking ahead to its next challenges. On what else is in the pipeline for the two directors, Miles said to watch out for their collaboration with the University of Plymouth, which revolves around understanding the patient experience evidence base and developing research prioritisation for the future. There will also be work with Leeds Beckett University around developing professional qualifications for patient experience teams within NHS trusts, too.
In the meantime, the team hope to keep refining and updating their current tool – and causing the rest of us to engage with data and ask those important questions.
