According to scientists and health professionals, the promise of early cancer detection is underpinned by three key ideas: cancer is more treatable if diagnosed early; medical and statistical technologies can
sort populations according to clinical constructions of ‘cancer risk’; and targeted ‘populations’ are interested in engaging in practices of cancer detection. Yet, taking the available statistics from national breast, bowel and cervical screening programmes for the years 2017-2018, we observe that over 30% of the target population does not engage with screening services within six months of being invited. Colleagues in health research have responded with study findings that outline some of the factors influencing the observable patterns of uneven participation of certain groups in cancer screening programmes, while still facing a methodological challenge: It is difficult to recruit people who do not engage with studies that explore the reasons behind their non-engagement. This predicament has resulted in these groups being deemed “hard-to-reach” by health research and Public Health initiatives.
Thinking anthropologically, we can see the problem the other way around by recognising that the limitation that health researchers have been facing might be reinforced by the unhelpful construction of the ‘subject at risk’ a stereotype which frames some people as unknowledgeable or otherwise structurally limited, indirectly placing blame on these groups for 'opting out'. Asking non-participants to articulate motivations and barriers concerning cancer screening misses the opportunity to learn something far more pertinent: the practices through which each lives and acts on risks. Instead of asking people reluctant to participate why they do not attend screening programmes, our CRUK-funded pump-priming study “Elusive Risks: Engaging with the Hard-to-Reach in the community”. With Maryon McDonald and Ignacia Arteaga as co-investigators and Kelly Fagan Robinson as Research Associate, we sought out to meet so-called “hard-to-reach’ populations in the places frequent to get to know how they make sense of and navigate relevant risks in their lives. We carried out fieldwork in 15 sites in Cambridgeshire with 135 participants from so-called ‘hard-to-reach’ groups over the summer of 2019. They sought out and met with people who lived without a permanent residence, or were affected by long-term disabilities, and others who were working on short, part-time contracts or in seasonal work. We also approached local initiatives that brought together people affected by severe mental health issues, migrants with weak or no safety-nets, rough sleepers meeting in day-centres, or people trying to recover from drug and alcohol addictions.
In our recent BMJ opinion piece on this research and its repercussions during the pandemic, we explain that “despite the diversity of their daily challenges, we found that most of the participants were, in their own terms, having to live one day at a time. Social exclusion, stigma, or poverty meant that their lives were most frequently focused on immediate needs to ensure survival. Participants put effort into doing things they felt they could affect—including distancing themselves from people they perceived to be dangerous or who might add to the challenges of their lives” (Arteaga, Fagan Robinson and McDonald, 2020). Moreover, in a recent chapter submission “Emic Semiotics of Care and Risk in Cancer Field Research”, we delve into the semiotic differences that could help us explain some of the resistances that research participants felt towards accessing preventative cancer programmes and formalised healthcare, more generally. On it, we argue that “differences in the valuation of knowledge-making practices may undermine effective communication between health research and the publics they seek to support. Ignoring these divergences raises the challenge of reproducing epistemic opacity; that is, the possibility of remaining oblivious in our practices as researchers, missing out the ways in which others create the knowledge required to construct wellness in their everyday lives.” (Fagan Robinson and Arteaga, under review).