Health, Scepticism and Community
A Pilot Study of scepticism, activism and inclusion in Brixton
Background
Over the course of the pandemic, Britain’s problem with health inequality has finally received widespread attention. The 11 August 2020 updated report on COVID-19 inequality prepared by Public Health England confirmed what those who study healthcare already knew: that people from BAME communities were disproportionately affected by COVID-19, with death rates “highest among black and Asian ethnic groups.”
The presence of health inequalities in Britain is not new. The 1980 “Black Report” showed that despite the introduction of the NHS in 1948, health inequalities were still getting worse. Between the 2010 “Fair Society, Healthy Lives” study and its 2020 follow-up, the situation had again deteriorated. Life expectancy among BAME communities had fallen over the intervening period, and health inequalities were again on the rise even before COVID-19 arrived.
The Black Report solidified the trend in the UK of attributing health inequality to what was in 1980 still a relatively new sociological concept: that health was socially determined. Referring both to the material conditions of life – access to adequate nutrition, housing, educational opportunity – and to behaviours these material conditions were thought to spawn – smoking, drinking, diet, drug use – the “social determinants of health” cast light on the general inequities of society and blamed them for poor health outcomes.
In her recent discussion of COVID-19 and race, the sociologist Marya T. Mtshali has argued that recent concerns over one form of scepticism, vaccine hesitancy, in American black communities reveal an institutionalised racism. Where vaccination is viewed as an unmitigated good, community members who refuse to get vaccinated are deemed to be at best irrational and at worst, conspiracy theorists. Though we know that there are good historical and contemporary reasons why black communities might be sceptical about healthcare, it is rare for sceptical voices to reach the mainstream, in part for the reasons Mtshali has suggested.
In part too, it is because of our tendency to view health scepticism not as a measure of how well healthcare works but as a reflection of the marginalised health sceptic herself: a measure of her own personal experiences, political convictions, “material” life considerations, or tendency toward distrust or conspiratorial thinking. Health scepticism is also often held to be a result of misinformation or a “groupthink” mentality, and thus quite often conceived of as having psychological or even evolutionary origins. This has helped to reify the notion that being sceptical of healthcare is intrinsically illogical.
The visibility of the large numbers of vaccine hesitant now has started to change this positioning of the sceptic, from outlier to subject of interest. This project picks up on this by contending that there is real validity in these sceptical critiques. What might these critiques tell us about where healthcare has gone wrong, where it has missed failed its constituent communities, where it has sown discord and distrust rather than the blanket allegiance presumed to be the logical, correct and intuitive relationship to healthcare?
The Project
This pilot project seeks to explore this question via a community study based in Brixton. This is a culturally diverse community, whose residents have roots in Trinidad, Jamaica, Nigeria, Somalia, Eritrea, and the Congo among other places. It is also a sceptical community: a community that has become a rich counterpublic space for various historical reasons both specific to this urban locale and also reflective of the larger history of racism and inequality in the UK. It is a community for whom mainstream healthcare, according to preliminary study by our community partner The Social Innovation Project (TSIP), is not automatically or uniformly taken up. It is a community with a history of health activism and where alternatives to the formalized structures of healthcare also proliferate.
If one goal of the project is to better hear, know and understand the sceptical voices of one predominantly black South London community, another is to model a way of doing research into health scepticism where the sceptic, and her community, remain firmly at the centre. Thus, this is not a study of how we might develop greater trust for healthcare within the community; it is a study of what a sceptical community can offer to conversations about where healthcare has gone wrong and how it can be made right.
TSIP will make an ideal partner as it houses a new community organisation called Centric, which is developing a new community research methodology. Centric is unique for its commitment to conducting research by community members, for community members and with community members. Community researchers are ‘upskilled’ – in this case through training provided by our policy, media, healthcare and historical collaborators – but then carry on the active research largely independently, feeding back regularly on their findings. In our project, these same community researchers return at the end to ‘upskill’ our target audiences: healthcare professionals and policymakers.
The advantages of this are great. Because of Centric’s positioning in and of the community, it can tap into the community’s cultural nuances as well as inviting in the so-called ‘hard to reach’ members whose voices do not normally reach the mainstream. Because it is also forthe community, Centric performs the critical task of safeguarding the community from the sometimes predatory data extraction methodologies of even the best-meaning researchers and ensures that its findings are relevant, meaningful and stay local to the community itself.
This study is not only about gathering and analysing data so that we know Brixton’s sceptics and activists better. It is also about taking their critiques of healthcare seriously, as legitimate and critical markers of where they have been failed by conventional healthcare methods and/or fulfilled by health alternatives. A critical and discrete endpoint of this explorative collaborative project is its dissemination – articles, podcasts and a ‘witness seminar’ - especially to our target audiences in healthcare, policy and in the media. This dissemination will be followed up with a series of workshops, bringing together clinicians, administrators, policymakers, and other prominent medical commentators in the media to engage with the community ‘experts’ who both guide and populate our study, which we hope will demonstrate the success of our methodology and catalyse a truly collaborative re-thinking of healthcare going forward.
Understanding the health sceptic and activist within this predominantly black community is not an effort to understand the roots of health scepticism for all. Instead, it is a first attempt at scepticism’s disaggregation – from the homogenised position of generic distrust to a more specific, culturally nuanced set of concerns. Likewise, this is also not an attempt to understand the health scepticism of the incredibly diverse communities homogenised under the acronym BAME.
Instead, this is a pilot exploring the possibilities for a fundamental rethink of healthcare as we also explore new methods for community engagement and the re-orientation of our healthcare thinking more generally toward community need. It is also the start of a new kind of collaboration between community organisation and academic institutions which we see as an innovative next step toward what Gainty’s pilot Wellcome-funded Healthy Scepticism project has had as a goal: to gain funding for a multidisciplinary, international centre for health scepticism at KCL. The strength of the preexisting Healthy Scepticism project has been its substantive intellectual and creative contributions to healthcare thus far. Here we add to the picture, piloting a community study that, in conjunction with these earlier pieces, further opens up the possibility of translating research into action, in the form of reform-minded implementation in real time.