Blog series – Asthma outcomes: Third sector perspective | Dr Erika Kennington

Dr Erika Kennington, Head of Research and Innovation at The Asthma UK and British Lung Foundation Partnership outlines how we need to take the whole system, the players and the varied beliefs, behaviours and situations of people with asthma into account to improve outcomes.

'The use of evidence-based treatments, technologies and care pathways will improve asthma outcomes'.

This is the statement which underpins everything that the research, innovation and policy teams at the Asthma UK and British Lung Foundation Partnership do. Unpicking this statement in a little more detail helps us to understand the overall pathway to impact.

• Research helps us to understand the world more by generating new knowledge,
  • Innovation takes this knowledge to create something of value; this could be a new pharmaceutical treatment, a device, technology, piece of software or a care pathway itself.
    •  Once we have that product, we test it and generate a robust evidence base that proves safety and efficacy, as well as cost effectiveness.
      • The product then goes through regulatory approval and gets included in guidelines.
        • Finally the product is rolled out to the patients, these patients actively use the product and that's what leads us to the improved outcome.

People donate to charities like ours in the hope that the money they donate will trickle down this pathway and lead to improved outcomes. But we know asthma outcomes haven't been improving for a really long time, which tells us that this pathway is broken somewhere. We view this pathway as somewhat of a leaky bucket, with multiple ‘holes’ where the impact is leaking out. For example, we know that 60% of people do not receive basic care (Asthma UK survey 2019) despite this being in the guidelines, as well as up to 70% of patients not taking their medication as prescribed.  

How can we fix the pathway?

So, why is this happening and what can we do to the fix this pathway as a whole? There are three things broad areas: 

a.       Change the product, not the context; make perfect products for imperfect patients in an imperfect world 

We need to research and innovate products that work in the context of our current health systems, imperfect and stretched as they are, rather than believe we can change these systems to better resemble the idealized, well-resourced and well-controlled environments that we tend to develop and test our products in. Similarly, we need to create products that solve patients’ unmet needs within the context of their existing beliefs and behaviours, rather than creating products for our idealized ‘perfect patients’ - who we then disproportionately recruit into trials - and believing that by using our perfect product we will miraculously make our patients become perfect.

b.       Test the product in the whole population, and measure experience alongside efficacy 

It is essential that we design trials that generate evidence for the hugely diverse asthma population that we have; asthma affects people of all ages, genders, ethnicities and socioeconomic backgrounds, and a significant proportion of this population has additional co-morbidities. It is also essential that this evidence base demonstrates user experience as well as product efficacy, and arguably in equal weighting. Measuring patient experience (i.e. is the product acceptable, usable, accessible, desirable etc) and iterating products in response is the only way to ensure we create products that people will ultimately use, thereby preventing the huge financial investment in the pathway being wasted.  

c.       Understand the pathway to impact 

The product development pathway is easy to understand when it comes to a new drug because it is a well-trodden pathway and we all understand who the players are at each stage. However it is really difficult to understand when it comes to a non-pharmacological product such as a new care pathway or a device. It's hard to know what the regulatory standards are when they frequently change. How do we get something adopted into guidelines? Who is able to produce that product at scale? How is it going to be distributed – will it be by pharmacists and who will train them? For a care pathway how will the old pathway be stopped and the new one started? To date we have not given much thought to the pathway to impact beyond the generation of the evidence base but until we understand what the it is and how we move through it, it's going to be really hard to carry this leaky bucket through to the end.

In each of these three areas, collaboration will be key. We can no longer simply work with people we already know, or the people they know; instead we must actively seek radical cognitive diversity. We must understand who the players at each stage of the pathway are, what their individual agendas are, and we need to come together much earlier so we have an understanding of future roadblocks. A successful product which improves asthma outcomes will not only need a robust evidence base, but also the incentive and ability to be delivered at scale