Public involvement in research is essential. However, when that research addresses public health issues, how best to do this is not straightforward. Naïve processes of engagement risk tokenism, erosion of good faith, and frustration for all collaborators.
The aims of public involvement are multiple, but they generally relate to the values of representational democracy, of bringing all relevant expertise (including expertise by experience) to the table, and of accounting for patient and public priorities. When researchers study particular diseases or services, the right publics to involve may be relatively obvious. They include those living with the condition or using health services for that condition – and of course those who could benefit, but are excluded. Properly engaging with those diverse publics is not easy – but finding the constituency to involve is, in theory, fairly clear.
In contrast, public health researchers typically study issues that affect whole populations, frequently at global scale. Threats to the health of the public such as air pollution, epidemic infectious disease, health inequalities, lack of physical activity, or smoking, obviously bear more heavily on some than others. Those living near busy roads, or managing on inadequate welfare benefits are likely to have particular expertise in the pressing issues of how to live with and mitigate health risks. But pollution, or health inequalities, impact on all of us. And all of us collectively contribute to structuring society in ways that distribute pollution or equity to make it more or less health damaging. As the ongoing COVID-19 pandemic has illustrated, the health of every individual is intricately implicated in the health of a planetary public. Where, then, are the publics that should be involved when we research public health problems?
The National Institute of Health Research is a major funder of public health research in the UK. It expects “Consultation and involvement from members of the public” in all funded projects, and includes public representatives on its funding committees to ensure that this is enacted. They have an essential role in representing ‘the voice of the public’ in decision making, and ensuring that all researchers involve the public. However, the mechanisms currently available for doing this are perhaps weak ones for achieving the benefits of public involvement. Too often, they posit a rather undifferentiated national ‘general public’, defined by tautological exclusion: that is, public members represent the public because they are neither professional researchers nor providers of public health services.
Defining publics by what they are not is inherently problematic, as Graham Martin has already eloquently outlined in relation to health services research. These challenges become more pressing in relation to public health research. Identifying relevant experiential knowledge, and a representative public, become more difficult if we explicitly exclude both professional expertise in accessing knowledge (the domain of professional social science researchers) and expertise in enacting democracy (the domain of local government, which homes – in England – public health professionals).
There are many experiential bodies of knowledge that can – and should – be included to ensure that research agendas are well informed, that research findings are sound, and that interventions are appropriate. On air pollution, these will include expertise in managing travel in more or less sustainable ways, expertise in campaigning for cleaner streets, expertise in sensing air quality, and expertise in managing the consequences of air pollution for self or family members. These experiential bodies of knowledge are distributed widely; many universally. We all have expertise in protecting and promoting healthy communities. Professional researchers and public health practitioners have experiential expertise – and it is difficult to argue that this is inherently any different from that of non-professionals, particularly on topics where they have no technical expertise. Lived experience is, by its nature, partial and positioned. Of course, professional research is also partial and positioned. But it does – or should – strive to account for that partiality, through deliberately testing emerging explanations, and seeking to widen understanding.
How do we access appropriate representative, inclusive, experiential knowledge? Doing so directly is challenging. Even restricting the affected public to those living within a national border, in the UK we have some 68m people. Involving even 20 or 30 as ‘public’ representatives in research will barely touch the diversity of identities and communities affected.
Most of those 68m will be, quite legitimately, completely uninterested in our research. On many topics, the ‘general’ public is unconcerned, and knowingly ignorant. In a functioning democracy, delegating technical decisions to elected bodies such as local authorities is a perfectly reasonable position; few of us (with our ‘public’ hat on) have the time or inclination to feed into many of the diverse issues that public health researchers are studying.
More importantly, there is no ‘pure’ knowledge that can be elicited from those publics who are motivated, or persuaded, to become involved. The mechanisms we have of involvement, or for accessing experiential bodies of knowledge, create specific kinds of knowledge. On a study of the public health implications of reducing street lighting, for instance, we found very different ‘public knowledge’ was generated depending on whether we used intercept interviews, analysis of local authority consultations, individual in depth interviews, or natural group discussions. Respectively, these elicited an ignorant and uncaring public; a divided and angry public; a concerned and anxious public; and a measured and deliberative public. These publics do not just co-exist – they are, to an extent, made through specific research and involvement processes. The key question is how these publics come into being, and how they are created (or silenced, or excluded) through particular processes of involvement or consultation.
We need to stop pursuing a notion of representational democracy in research involvement, preferring instead a representational pluralism. Reframing research involvement as an exercise in pluralism opens the door to considering publicsand not a public, purposively seeking experiential knowledge in its many relevant and diverse forms. Taking up the example of air pollution, research involvement could then draw on a ‘technical public’, such as sanitation workers and engineers; a ‘professional public’, such as advocates for cleaner streets; a ‘political public’, such as policymakers and decision-takers in environmental health; and a ‘citizen public’.
To do this well requires that we stop fetishizing ‘public’ involvement as only legitimate if untarnished by mechanisms for eliciting public knowledge. A harsh division between social research and public involvement is unhelpful, if its assumes that there could be some unmediated way of directly involving publics in research. If local democratic mechanisms fail to involve publics in public health agenda setting or intervention design, that is an argument for strengthening local democracy. If social scientists fail to account for the plurality of knowledges in designing or conducting research, that requires better social science. Neither challenge will be met through tokenistic involvement of a few public representatives on a steering committee.
About the author: G.J. Melendez-Torres (@gjmelendez) is Professor of Clinical and Social Epidemiology at the University of Exeter. His research focuses on health technology assessment, child health, and intimate partner violence.