The Democratisation of Healthcare

Predictably much was learnt in the early days and the technique was inevitably developed and refined. However, it is has now become widely available around the world. At the time of writing nearly 30,000 people have been successfully treated and multiple scientific studies have been published demonstrating TIF’s safety and effectiveness.

So, this got us thinking. Why has it been so slow to be adopted more widely?

In some respects we shouldn’t be surprised. We first performed LINX®️ surgery in 2014 when there were just a handful of centres offering the procedure. But by 2023 we’ve treated nearly 400 patients with LINX and worldwide about 40,000 people have undergone the procedure. Over 100 academic studies have been published including a prospective randomised controlled study (RCT), providing the most powerful clinical evidence of LINX’s clear superiority to PPI medication. And yet in the UK LINX is still not widely available, even in the private, let alone NHS, sectors. Similarly, while at an earlier stage of its evolution, RefluxStop today is offered in only two UK centres.

It’s worth firstly considering the magnitude of the problem. About 20% of the adult population experience regular reflux symptoms. Most manage these easily with dietary and lifestyle modifications but PPIs are one of the most commonly prescribed drugs worldwide- believe it or not over £13 billion is spent every year on these. And yet 20-30% of patients taking these drugs to treat reflux symptoms will find they fail to adequately control their symptoms. And so, there are literally hundreds of thousands of patients in the UK alone who could potentially benefit from an intervention such as LINX, TIF or RefluxStop™, let alone the standard fundoplication operations. And yet only about 1% of the patients that could potentially be helped actually undergo surgery. That’s right- 99% of people with persistent reflux symptoms failing other treatments continue to suffer when there are minimally invasive procedures available that could help them, perhaps transforming their lives. Simply, the vast majority are never offered the option and when they are, most have almost always been battling with their symptoms for many years.

Why is this? Why is there such a big gap between the obvious need for which we have solutions and what actually happens, leaving countless patients experiencing sometimes debilitating symptoms for years.

Of course there’s no single reason and it’s complex, with multiple barriers along patients’ pathways.

Firstly, there’s often a lack of understanding among patients themselves of the available options. They’re too often simply unaware that there are all sorts of procedures today that could help them. So they don’t ask.

Primary Care Physicians, GPs are often equally unaware. Perhaps their knowledge is based upon historic experience of outcomes when they were at medical school or from patients who’ve not done so well after fundoplication performed badly- we’ve previously written about the variation in outcomes and the relationship between centre/surgeon volume and good outcomes; sadly, most anti-reflux surgery performed in the UK takes place in non-specialist centres. Many GPs are simply unaware of the development of minimally invasive procedures such as LINX and TIF while the vast majority work in the NHS and are encouraged to avoid referral to secondary care. So perhaps they see the treatment of reflux as not being a priority and rather unimportant in today’s environment in which patients with life-threatening conditions often wait for treatment. Or perhaps they simply think that reflux is a relatively trivial condition for which an expensive intervention is unwarranted. And of course there is a frequent belief that PPIs will always treat reflux- we’ve lost count of the number of patients who’ve been treated with ever increasing doses of these powerful medications without any response, perhaps more in hope than expectation before they finally find their way to see us.

When GPs do refer patients to specialists it’s usually to gastroenterologists (GIs). Typically they are reticent to refer patients for surgery, again maybe because they have poor experience of outcomes in the patients who they have referred or they don’t have access to specialist centres. The tests required to guide treatment before surgery are not widely available and again some are unaware of the evidence regarding the effectiveness of the newly available procedures. In any case, most aren’t reflux specialists and don’t perform complex interventions themselves and so would struggle to learn TIF for example. Overall, we see what might be called a “professional bias” against anti-reflux surgery.

Surgeons are often slow to adopt new techniques. Inevitably there are early adopters in any professional group and others will follow more slowly but it’s remarkable that 15 years after the introduction of LINX there are so few centres offering the procedure. Why? There are few surgeons who perform high volumes of anti-reflux surgery and have a specialist interest in GORD. Most work in the NHS and are rushed off their feet treating conditions seen as meriting higher priority such as cancer and emergencies. The incentives are not designed to encourage the rapid adoption of new technology in surgery. Again, it’s taken 15 years for NICE to recommend that LINX should be offered widely on the NHS and sadly, given the understandable priorities of today’s NHS, it’s unlikely that this will be achieved any time soon.

And finally, payers are naturally often resistant to fund new technology that they believe may meet an unmet need. Given the nature of GORD, it’s high prevalence and the opportunity to treat so many more people, private medical insurers and NHS commissioners may well prefer to avoid supporting new treatments when they become available.

So what’s the answer? Well in our view it lies in the hands of patients themselves. In the past the medical profession was seen almost like a priesthood with a monopoly of knowledge. There was asymmetry between what they knew and what their patients knew. So patients were almost always simple recipients of the treatments offered by their doctors.

This is changing very rapidly. Patients now have access to the sum of medical knowledge from the numerous digital platforms that are now available. They’re becoming used to accessing information whenever they want it and educating themselves accordingly. They’ll now frequently know more about their condition and the new options available to treat it than their doctors. Instead of passively being treated we are seeing more and more people requesting and if necessary demanding what they know is available. Patients are increasingly voting with their feet.

We call this process the “democratisation of healthcare”.

At RefluxUK we welcome this trend with open arms. It’s only right that patients participate fully in their own healthcare and drive their treatment in partnership with their clinicians. We see it as our job to provide as much education to doctors treating patients with reflux but most importantly information for patients, through our website, podcasts, videos and blogs such as this. The more equipped patients are to become their own advocates, in our view the better.

If just one patient benefits from what we’re doing in terms of education and finds a solution providing them an improved quality of life that would otherwise have been denied them, then we will have succeeded and will be absolutely delighted.