Richard Armitage is a GP and Public Health Specialty Registrar, and Honorary Assistant Professor at the University of Nottingham’s Academic Unit of Population and Lifespan Sciences. He is on twitter: @drricharmitage
Following the recent death of Dame Deborah James, the role of high-profile individuals and their relationships with the popular media after being diagnosed with severe illness re-entered the spotlight. For me this raised multiple questions. In this article I will make three arguments that aim to address some of those questions that relate to population health.
Dame Deborah James was an incredibly courageous and inspirational individual. Following her stage 4 bowel cancer diagnosis at age 35,1 the deputy head teacher and mother of two began vividly detailing her cancer journey on a widely-read blog, before writing as a columnist for The Sun and becoming a broadcaster at the BBC. Her Radio 5 podcast ‘You, Me and the Big C,’ which she started in 2018 with co-hosts Lauren Mahon and Rachel Bland, discussed the practical yet often overlooked aspects of cancer and its treatment, with a compelling combination of “frankness, honesty and humour” that drew a huge audience.1 In May 2022, she informed a million social media followers that she had moved to hospice at home care, and shortly afterwards had her damehood conferred by Prince William.2 Dame Deborah died aged 40 at her family home on 28 June 2022. Her Bowelbabe Fund for Cancer Research UK, which raises money for research and clinical trials in personalised cancer treatments, has so far raised over £7 million.3
Certain kinds of media amplification may cause more harm than good
The announcement of Dame Deborah’s death, initially on her social media and subsequently amplified by news corporations,1 seemed to trigger an enormous increase in the number of people accessing online bowel cancer information. Daily visits to the NHS bowel cancer symptoms page increased from 2,000 on the day of her death (announced in the evening) to 23,000 the following day.4 This effect was similar (but markedly more pronounced than) that associated with the BBC news editor Jeremy Bowen’s revelation that he had also been diagnosed with bowel cancer in 2019, in which the total page visits on the day of the announcement were nearly treble that of the previous year’s average.5
Dame Deborah’s story is the latest in a number of high-profile cancer journeys that have been widely shared in the popular media. British celebrity Jade Goody died from cervical cancer at age 27 in 2009,6 Kylie Minogue was diagnosed with breast cancer at age 35 in 2005,7 and Angeline Jolie underwent a preventative double mastectomy to reduce her elevated risk of breast cancer due to her BRCA1 gene in 2013.8 Each of these celebrities was decidedly and publicly vocal about their diagnoses, symptoms and treatment decisions, intending to raise public awareness of the importance of screening, the relevance of family history, and the worrying symptoms that warrant seeing a doctor.
A delicate balance is necessary – one that empowers individuals to recognise legitimate problems… while not misrepresenting the ratio of zebras’ hoofbeats to those of horses.
On first pass, it seems that a significant number of people being prompted to visit the NHS bowel cancer page can only be a positive outcome. This may induce symptomatic individuals who were ignoring their illness to finally seek help. While this may be true, it may also be possible that, as an isolated headline without adequate context, various unintended consequences may arise. For example, for those without clear-cut symptoms or a nuanced understanding of Dame Deborah’s health messaging, forming an association between non-specific bowel complaints and a young person dying from bowel cancer may induce an abundance of health anxiety. This may cause harm in multiple forms, including the psychological burden of worrying about health, the inconvenience (and potential economic effects) of consulting a GP, and the usage of finite health system resource that must be distributed efficiently. All these harms may also be compounded by the battery of investigations arranged by the doctor, which may cause troublesome and unacceptable side-effects.
A delicate balance is necessary – one that empowers individuals to recognise legitimate problems (the aim of Dame Deborah’s podcast through her frankness about red flag symptoms) while not misrepresenting the ratio of zebras’ hoofbeats to those of horses. This would require the public’s low health literacy and reactive responses to celebrity health messaging to be upgraded to a superior health literacy and appropriate responses to concerning symptoms. Of course, health literacy differs between people and groups, in the same manner that risk tolerance and neurotic personality traits vary between individuals, which each influence health-seeking behaviour. But, in general, we should only want anxiety where it usefully guides behaviour, while avoiding unnecessary harms when their utility is net negative. In other words, we should encourage health promotion messaging that induces health-seeking behaviour with high positive predictive value – meaning those with ill-health appropriately access healthcare – and high negative predictive value – meaning those without ill-health appropriately do not. Success would be reflected in a substantial proportion of the additional 21,000 visits to the NHS bowel cancer page ultimately translating into bowel cancer diagnoses (or other diagnoses of comparable significance) in order for the burden of harms represented by those visits to be justified and worthwhile. It is unlikely that this (likely short-lived) spike in page visits generated such an outcome, which therefore may represent an unfortunately harmful side-effect of the media’s coverage of Dame Deborah’s death.
The widely publicised story of Jade Goody’s diagnosis of, treatment for, and ultimate death from cervical cancer provides a different perspective to analyse the impact of celebrity illnesses and population health outcomes. The media’s coverage of this story was associated with a sufficient rise in attendances in the cervical screening programme in England.9 Similar effects are associated with of a cervical cancer storyline in the soap opera Coronation Street in 2001,10 and in the Australian breast cancer screening programme in response to Kylie Minogue’s breast cancer diagnosis.11 While these effects were short-lived and returned to their respective baselines once media interest declined, the result was that many individuals who were eligible to attend screening but who would otherwise not do so were persuaded to attend their appointment and benefit from the service. Assuming that the screening programme in question is ethically permissible, increasing the uptake by those deemed eligible to participate in it is of undeniable value. The key difference between the story of Jade Goody and that of Dame Deborah is that while the former was eligible to partake in a relevant population screening programme, the latter was not since she was two decades too young. The result of their public awareness campaigns (that were each amplified by the media) is therefore likely to be different: while Jade’s seemed to increase (albeit temporarily)12 participation in the existing cervical screening programme, the impact of Dame Deborah’s is less clear. Hopefully it will increase participation in bowel screening in those eligible to partake in it, while also empowering individuals who develop red flag symptoms (especially younger people not eligible for screening) to see their GP urgently. But, the potential for harms as detailed above – such as the psychological, economic and resource allocation trade-offs of unnecessarily worrying about health – is also increased by such media coverage, unless it is adequately contextualised (such as that achieved by her podcast).
Health promotion messaging must be sustained to be effective
Dame Deborah’s ‘You, Me and the Big C’ podcast… provided consistent, contextualised, and trustworthy health messaging delivered by a small group of relatable, compelling, and highly likable people who created close relationships with their listeners by inviting them into their lives.
An alternative perspective through which these phenomena can be analysed is that of the public’s appetite for, and ability to receive, retain and convert into behaviour change, health promotion messages. A discouragingly large proportion of the information provided by healthcare practitioners is immediately forgotten,13 which informs consultation techniques such as chunking and checking. Similarly, public health practitioners craft their messages using principles of communication designed to increase absorption and the information’s ‘stickiness.’14 Human attention is a finite resource, and the mind both quickly becomes saturated with informational content, and forgets that information unless it is frequently re-presented. Accordingly, rather than relying on celebrities’ unpredictable, reactive, and short-lived public awareness campaigns to improve population health outcomes, greater resources should be injected into strategized, targeted, and sustained public health messaging. Of course, many such health promotion campaigns currently exist, such as the NHS’s Better Health campaign, yet the existing budget for preventative interventions is only a minuscule percentage of national health spending,15 and great improvements in population could be realised if this budget were increased.16 Dame Deborah’s ‘You, Me and the Big C’ podcast is a strong candidate for such an effective intervention, as it provided consistent, contextualised, and trustworthy health messaging delivered by a small group of relatable, compelling, and highly likable people who created close relationships with their listeners by inviting them into their lives. While the effects of the podcast are unlikely to reveal themselves in the total daily visit statistics of the NHS bowel cancer page, its impact on population health outcomes is potentially substantial. This form of health promotion – which is independently undertaken by charismatic, entrepreneurial, and altruistic individuals outside the traditional sphere of the public health authorities – should be recognised as being of potential great value to public health researchers, subjected to academic study, and subsequently used to inform the large-scale evidence-based health promotion campaigns of the future. It may be the case that tuning in to familiar voices at the same time each week to hear them talk honestly about their battles with cancer does more to positively shape health-seeking behaviour than the traditional health promotion methods such as billboards and TV ads. It may also be likely that the nuanced messaging made possible through these broadcasted conversations avoids the harmful side-effects of context-free but attention-grabbing headlines, and thus increases both the positive and negative predictive values of the health-seeking behaviours they induce.
Healthcare professionals still owe a duty of care towards celebrities with severe illnesses
High-profile figures have the ability to communicate with, and influence the health behaviour of, potentially millions of people through the incredible reach of social and legacy media platforms. The celebrities discussed in this article demonstrate that at least a proportion of high-profile individuals are willing share the details of their severe illness diagnosis and treatment with their audience. Doubtlessly, for some or perhaps all these individuals, the potential to help others recognise that their own symptoms require medical attention, and to give strength to other people who are seriously ill, motivates their decision to go public with their condition, brings substantial meaning to their lives, and may even make the prospect of their own death slightly easier for themselves and their loved ones to bear. However, healthcare professionals must remember that, despite their public standing, such individuals are primarily patients in the eyes of the medical profession, and a duty of care must accordingly be extended towards them. Arguably, this duty is of even greater magnitude due to the potential for celebrities to feel pressured to remain in the public realm throughout their illness to dutifully impart health promotion messaging and generate their own version of the ‘Jade Goody Effect.’17 While some individuals clearly hold a wish to remain in the spotlight, others may prefer to retire into privacy. In all cases, their decisions must be made freely, reached autonomously, and respected by healthcare professionals regardless of the population health benefits that may be forgone by a decision to step out of the public eye.
Conclusion
While high-profile individuals have an enormous ability to influence the public’s health-seeking behaviours, the manner in which this currently manifests appear to be suboptimal and potentially problematic. Scholarly attention should focus on such phenomena, to identify and subsequently implement the most effective means by which such influence can be harnessed to improve population health outcomes while minimising unintended side-effects and maintaining the duties of care we owe.
References
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Featured image by Karsten Winegeart on Unsplash
