Hello, I’m Ajay Aggarwal, I’m a consultant clinical oncologist at Guy’s and St Thomas’ NHS trust and associate professor in Health Services Research and Global Health at the London School of Hygiene and Tropical Medicine. I’ve been asked about services and systems research to inform national cancer control plans, and really I think they’re very important for addressing four fundamental gaps. There’s an evidence gap, there’s an implementation gap, there’s an equity gap or an access gap, and there’s an outcomes gap as well. I’ll explain both why these are important in terms of improving outcomes and affordability and equity at the population level, but also how these are actually key research questions requiring quite robust methodologies to actually answer formally in order to inform national cancer control plans.
So if we take the evidence gap, we sort of take as a mantra we need randomised controlled trials and real-world evidence is very good, but it goes beyond that. Have we asked the right question? Have we designed the study in the right way and used the right data for it? Are we using the right endpoints? Are we able to show whether a new intervention or drug improves the quality of life, the length of life? Have we taken patient-centric outcomes within that, so patient reported outcome measures, and also cost and affordability? So these are many things, and many of the issues that we often have is because we haven’t actually developed the adequate evidence in order to support implementation, not just in the high-income setting but in the low- and middle-income setting as well especially, and that’s why there’s often a difficulty in integration of silos of care. The other factor is actually in many studies the population is not representative of the population actually treated in the real world. That disconnect can often mean that studies which show marginal benefits in randomised controlled trials show no or little benefit in the actual real world. So we have to have an adaptation to the actual populations that are required.
So then there’s a lot that needs to be done. The value-based healthcare frameworks that are coming, that are trying to raise the evidence bar, not just for medical oncology but also radiation oncology. So evidence is a fundamental area to focus on. So for national cancer control planning are we advising those interventions that are going to meaningfully improve outcomes or at least have evidence for that effect.
The second thing is the translation gap. We spend so much time on innovation, biotech, but very little on actually implementation. The reason why that’s important is that only 50% of innovations that we know that work and have a robust evidence base actually get into clinical practice, and it can take up to 20 years to do so. So what are the areas for that? Well, professional consensus – do people agree? Often they don’t, there’s often differences in opinion. There’s the regulatory hurdles – can it get through those hurdles, and seen as a safe device or drug? There’s reimbursement – who’s paying for it? Does it need to go through health technology assessment? What is the sort of broader funding for those drugs? Is it through patient out of pocket, is it funded through the actual health service itself or is only available at private providers?
So these are all elements that need to be understood and exposed and the barriers and facilitators through implementation research to understand this better. So I think that is a major area where we just think that, actually, if we develop all this amazing innovation it will suddenly get to the patients themselves. Well, we can see there’s a failure to do so but that’s because there’s a failure to research how we adopt new innovation.
The third bit which I think is important is the access gap. Given we hear about it, patients who actually require treatments not having access to those, and it often tends to be lower socioeconomic groups or elderly groups, or marginalised groups to some description, whether it’s also from different ethnicities or parts of a given country. A, we need good epidemiological research to understand the clinical epidemiology, and then we need to understand, once we’ve seen what this issue is, why is this issue occurring? On a very basic level is it due to a lack of availability or equipment or workforce - that in itself needs research to work out actually what is the actual resource need to meet the current need and future needs, so lots of modelling work with regards to that. Then there’s an element of what is the system for understanding what is the best intervention for patients, and that’s evidence based guidelines; do we understand whether they are available and ask whether they’ve been used adequately? Then there’s access - how do people access services? How are they referred? Can they actually get to the treatments themselves? Do they need help with transportation? Accommodation? Do we need to increase the accessibility more locally?
So those are all factors, and we move to we need to improve outcomes, we need to centralise, but actually understanding the trade-offs that will occur with regards to patients actually getting and receiving that treatment is profound. Work done from national audits in different countries can show that actually the same patients with high-risk disease, so an example from the national prostate cancer audit: there’s a 50-90% difference in whether a patient with high-risk prostate cancer actually gets a radical curative treatment. Huge gaps potentially. Equally, if you’re diagnosed at a centre that doesn’t offer surgery or radiotherapy, you’re less likely to get those treatments. So there’s a lot to be done.
I think the final gap, and it’s poorly understood, is the outcomes gap. We think that actually if we follow the recipe we’re going to get the same outcomes across the board. But we know that even when adjusting for different aspects of the patient, whether it’s their comorbidities or their age or their socioeconomic status, different patients receiving the same treatments, the same recipe, get different outcomes. This speaks of performance and benchmarking the best practice, and I think this needs to be centred on the professions themselves.
Now there’s a lot of work been done previously, particularly in the ‘90s as to how do we motivate performance or look at quality improvement and quality assurance? First and foremost we need good quality data and that needs to be presented at the right level, the hospital level or the individual physician level. We then need to understand how do you go about improving, so benchmarking of care, understanding an agreed consensus or guidelines towards that. We need that feedback as well to see whether there’s improvement. Now, the surgeons are ahead of the curve in this regard: for a number of years now increasingly cancer surgery, whether it’s in urology or bowel cancer, for instance. However we’ve now set up, particularly in the UK, benchmarking for radiotherapy outcomes and now systemic therapy outcomes. The first thing we see is quite a lot of variation in performance across centres in the UK. But then when we nailed down into actually what the reasons are, it’s not because people aren’t doing the right thing, it’s just that they’re not evolving their service, and this goes beyond the need for clinical trials. So we need to understand how we can motivate this.
Different elements that come into it are health system design, so do we say well actually we need to create centres of excellence, we need to centralise so we have all the specialist expertise, people who are doing a high volume of procedures, that improves outcome. Or on the reverse, do we need to motivate people through market incentives? One of the big things globally, and that involves national cancer control plans, is that we have healthcare markets essentially with information asymmetry. What I mean by that is actually people are moving around for care to centres which they think deliver better outcomes but don’t actually know what those outcomes are. If we had good information on quality of services then this could create the infrastructure required for boosting performance across the board.
So, for me, those are the key access gaps that health systems research can look to, research, and develop interventions for around evidence, around translation and implementation, access and outcomes. These are core ingredients for the national cancer control plans. The thing to mention, though, is that currently in terms of research outputs this only constitutes, this area, about 3-5% of all research. At the moment 50% is focused on systemic therapies, genetics, biomarker work, and a small proportion to the fundamentals of actually someone receiving that treatment and getting a good outcome from it, and how it’s funded. It’s poorly resourced and we need to have greater funding for this, and I think that’s from both federal funders and also private funders when necessary.