In the UK at least, as we ease out of lockdown and our critical care capacity starts to recover the narrative around COVID-19 has started to shift from infection rates, death rates, critical care capacity and the vaccination race, to the longer lasting impact of this pandemic on our general and mental health, employment and the economy.
It has also been well documented that the pandemic has forced upon us changes in our relationships and interactions with the healthcare system; the rise of the virtual appointment and digital health, a greater reliance on local pharmacy and self-care in the absence of being able to physically visit a doctor.
While these changes may ultimately result in an invaluable, cost-effective shift in the way we manage healthcare, they have not been without consequence and arguably may have contributed to an even greater challenge than dealing with COVID-19 itself. That is dealing with the backlog of undiagnosed or underdiagnosed patients across a realm of chronic conditions – none more critical than cancer care.
The Lancet reports that, in the UK, a whopping 45% of people with potentially cancerous symptoms did not see a healthcare provider for their symptoms during the first phase of the pandemic in 2020. Additionally, cancer referrals fell by 350,000 people and 40,000 fewer cancer patients started treatment(1). In the EU, the European Cancer Organization (E.C.O) estimates that up to 1 million cancer cases have been missed due to the pandemic and that 100 million less cancer screenings have taken place(2). In the US, one study suggested an extra 34,000 deaths are likely as a result of delayed presentation and diagnosis(3). If we extrapolate these statistics to a global level, it would appear we are sleep-walking our way to another major disaster, especially in a disease area where even a 4-week delay in timely treatment can increase mortality by 4-8%(4). The consequences of this are starting to be felt now, with emergency departments reporting a surge of admissions of patients with late-stage cancer symptoms. It’s a problem that I believe is currently under-recognised and has not really received wide spread attention. This could be because ministers and policymakers already have a full in-tray as they continue to grapple with ‘vaccine hesitancy’ (which my colleague Rachel Howard mentioned in her blog recently here), a desire to get the pandemic firmly under control, and reboot the economy or re-focus on other global challenges such as climate change.
Nevertheless, among the medical community, key online influencers in the UK continue to create buzz around the topic, referencing the mounting challenge and trying to build momentum around the issue. Here are some recent examples:
What has led to the downturn in cancer patient presentations?
It has been widely recognised that the delay and decline in patient presentations during the pandemic is likely a result of people’s fear of contracting COVID-19 during hospital or office visits, and an altruistic stance that patients do not want to put additional strain on burdened health services for what may be viewed as trivial symptoms.
While this is likely the case, it could also be argued that the COVID challenge has hyper-charged or exaggerated some pre-existing decision-making constructs that inform a reluctance to present to health care teams in a timely manner. Looking through a behavioural lens, we could hypothesise that these include:
The availability heuristic. It is estimated that about 1 in 7 people in the UK have had COVID-19 yet the lifetime risk of having cancer is 1 in 2. It stands to reason that given the noise (project fear) surrounding COVID-19, many assume the risk to be the other way around. In a similar manner, when we evaluate the risks associated with driving vs flying, the availability heuristic reaches for the closest information, recalls high profile airline crashes and assumes there to be a greater risk associated with flying than driving. Essentially this heuristic skews our view of how we process information.
Similarly, the present bias may also be dominating our thought process. Here, the idea is that in a trade-off situation, we will settle for a smaller reward now than a larger future reward. Given COVID-19 has dominated our thoughts for over a year, this bias suggests that people see it as a (bigger) win in the short term to not contract COVID-19, as they are not fully considering the potential larger, long-term pay off of not being diagnosed with potentially more fatal conditions.
The optimism bias suggests that we are prone to over-estimate the chance of something positive happening and underestimate the chance of something negative happening. This is the idea or premise that “something bad won’t happen to me”. Given this, we may be rationalising that our chances of having to live through COVID and then be unfortunate enough to get cancer in the same timeframe are minimal.
Conversely, there may also be the fatalism effect at play; this is the idea that one’s destiny is pre-determined and therefore our actions are unlikely to have any impact on outcomes. Fatalism has already been studied as a potential reason for delayed cancer presentation, especially among lower socio-economic groups(5). Recent research has also indicated that people over-estimate the infectiousness of COVID-19, which makes them less likely to adhere to healthy behaviours such as social distancing or mask wearing(6). Perhaps the combination of these two elements, and the rather fatalistic bad weather we are experiencing (in the UK) at the moment, has inflated the idea that our destiny is governed by a higher power among some.
All the above contribute to the widening of the intent-action gap. The intent-action gap is where we have every intention of doing something and know the reason why, yet somehow we don’t follow through. For example, we know that diet and exercise is key in mitigating multiple health risks, yet for many this is not something we are able to enact. Currently, fear and anxiety relating to COVID-19 has placed another barrier in front of our ability to enact healthy behaviours, or seek prompt presentation.
What can pharma do to address the problem?
Many cancers are already diagnosed too late, especially in the UK where we have some of the worst cancer survival rates in Europe, and we have noted, COVID-19 has exacerbated this problem for many reasons. While primary a public health issue and one that should be addressed by government and policy makers, pharma has a key role in driving initiatives to readdress this issue and manage the next big healthcare crisis, especially when their forecasts and projections are reliant on maximising the potential patient pool.
So, with the threat of COVID-19 hopefully diminishing, how can pharma leverage behavioural science and these insights to help ensure we see a reversal in the trend of delayed presentation?
At Research Partnership, we use the EAST framework as a means of consolidating potential influences on behaviour and as a way of applying these insights to steer us towards a desired behaviour change - in this case timely presentation for potentially cancerous symptoms. EAST dictates that to enable a behaviour it needs to be seen as easy, attractive, social and timely.
Based on our hypotheses above, which would need validating more thoroughly, potential interventions pharma could adopt as part of their unbranded disease campaigns could include the following:
Make it EASY. Thinking about the intent-action gap, it is not only our thoughts and feelings that prevent prompt diagnosis but friction along the pathway to behaviour. For example, if we have difficulty getting an appointment, if the surgery doesn’t pick up the phone etc. One thing COVID-19 has taught us is that by developing user-friendly interventions (for example the seamless vaccination roll out – text booking, text reminders, accessible and inviting vaccination centres, etc.) we can achieve great things. It is not unreasonable to think that if we use these principles to help facilitate a mass screening programme or ‘health MOT’ of at-risk populations, we may be able to identify those who fall between the gaps. This is an initiative that pharma has the capability to sponsor. Pharma could also help ‘make it easy’ by supporting measures to identify worrisome symptoms in a simple easy manner; for some tumors the signposting is clear e.g. a lump in breast or testicular cancer. Simple communication about broader, generalised, lesser-known warning signs of a possible cancer may also be valuable.
Make it ATTRACTIVE. Thinking about the optimism bias (and also fatalism), there is opportunity to harness regret aversion (a desire to avoid regretting an alternative decision) and also self-efficacy (an individual’s belief in their own ability to succeed). Communication needs to suggest and make the public feel like what they do matters. For example, going to a consultation now may be the difference between life and death, or at the very least gives you the peace of mind that there is nothing serious going on. With the availability heuristic there is a need to reframe the risk of cancer. As the pandemic starts to dissipate there is an opportunity or gap for pharma to re-engage the conversation about cancer and present the risks in a way that encourages action among appropriate populations.
Make it SOCIAL. Here the goal is to harness social pressure to help encourage others to exhibit a desired behaviour. Below is a tweet from Susan Michie, a behavioural scientist who is helping to lead the UK Government’s response to the COVID-19 pandemic. She is leading from the front by socialising her own recent experiences regarding prompt presentation for innocuous symptoms and encouraging others to do the same.
There is a huge space for pharma companies, with their clout, to help spread a similar message. We have seen what success collaboration among pharma organisations can bring in the development of vaccines. It is now incumbent on the community to help spread this message and socialize the numerous patient stories they are able to tell (through celebrity endorsements or key online influencers), to come together with a consolidated message about the importance of getting symptoms checked out, and to encourage commitments among each other to act on these messages.
Make it TIMELY. Here the aim is to prompt people when they are most receptive or to make benefits more immediate. Referring back to the present bias, people probably see a potential cancer diagnosis as far off or unlikely to happen to them. They likely also don’t recognise that a delayed presentation can literally be the difference between life and death. Communications and messaging must harness these considerations and use our current heightened sensitivity around healthcare issues (so called ‘hot states’) as a call to action, further highlighting the need to take action now. Additionally, the undiagnosed population are likely not currently seeing healthcare teams, so to resonate these messages need to work through channels that reach patients at home where they are suffering in silence.
Once people have been encouraged to come forward, finding the capacity, resource and finance to managing the backlog of new diagnoses will likely be the next challenge. But we’ll save that conversation for another day…
Anthony Greenwood is a Director at Research Partnership and part of our behavioural science practice. Find out more here.