ABHI at 30 Guest Blogs. Are Patients not Pushing Hard Enough to Access Innovations?
There are obvious imperatives for patients to be able to access the latest health innovations: once a beneficial technology has been created, how could it be considered acceptable for patients to be denied it? Well, we can immediately see that there is more at play here than a simple moral imperative – for instance, if the cost of the technology vastly outweighs any possible calculation of the benefit, demanding it becomes much harder.
So, we need to think very clearly about the nature of demand from patients for innovations. The first thing we need to consider is: is demand there at all?
One of the most interesting pieces of research published around the NHS’s seventieth anniversary was The King’s Fund’s research on the public’s expectations of the NHS. It found, contrary to the oft-asserted view that patients’ demands are increasing in line with the expectations they hold as consumers, that in fact patients are willing to make allowances for the NHS. They know it is free at the point of use, they recognise it is under pressure, and they perceive its staff are doing their best; so they can be willing to accept levels of service that they would not tolerate from a private company.
In many ways, the implications of this are positive: healthcare is not widely seen as a consumer good. If we were to shift to a system involving up-front charges, we can be sure that wealthier people would increasingly see health as a consumer good, and spend more of their income on it, while the less well-off would go without – with all the inequities that brings. It’s reassuring for the future of the NHS as a tax-funded service, free at the point of use, that a consumerist approach seems to run counter to our society’s fundamental instincts about healthcare. But this relatively forgiving view of the NHS may also bring downsides: are patients in fact not pushing hard enough to access innovations?
In practice, patients can make demands if it comes to it. We have all seen crowdfunding initiatives for a seriously ill individual to get ‘the latest’ treatment: sometimes well-evidenced drugs that nonetheless haven’t made it past NICE’s threshold or NHS England’s commissioning decisions yet; sometimes highly dubious treatments offered overseas that on closer inspection appear not to be clearly supported by medical science.
But in a sense these instances illustrate that it is hard for individuals to make demands on the NHS when they need
treatment or care, particularly if it is innovative. Because it is funded by tax, the NHS is at pains to make decisions equitably. Ethically speaking, patients may consent to treatment, but not command it. So direct demand by patients is not an obvious route to driving the uptake of new technologies. The widespread hand-wringing about the NHS being slow to pick up new technologies is largely justified.
There’s no single answer to these problems, but undoubtedly patient organisations and the voluntary sector have a significant role. They can help to inform patients of what innovations might be available, and often they are key in pushing for their uptake on the NHS, through NICE appraisals, NHS England’s commissioning processes, and by funding clinical trials and other research to prove efficacy in the first place. They are also a key route to patient involvement: hopefully those charities that fund research listen to what’s important to patients (though there can be tension there between what people would like and what science is pointing to as feasible). Other actors in the innovation arena are, happily, also pushing to a more patient-centric approach, with patient reported outcomes increasingly recognised as important alongside ‘hard’ clinical measures during the development of new technologies. What’s clear is that patients have vital roles from the earliest stages of identifying new approaches through to securing their use in the NHS – and at every stage, those roles probably still need expanding and strengthening.
Rachel Power, Chief Executive Officer, The Patients Association