As you have seen, participatory approaches do not always sit comfortably alongside conventional public health research and practice. In the introductory talk, I contrasted the traditional paternalism of clinical and public health practice with the inclusivity of a participatory bottom-up approach. This is relevant across the doing, knowing, and changing aspects of participatory approaches that we have been discussing. In this lecture, I'll focus on epistemology; specifically, the different concepts of knowing, which are embedded in participatory approaches. So let's start by defining epistemology. It is the study or theory of knowledge and justified belief, and is not to be confused with epidemiology, which is the study of the distribution and determinants of health and disease. Epistemology raises questions such as, what differentiates true knowledge from false knowledge? What are the sources of knowledge? What are its limits or what can we know? What is the relationship between the knower and knowledge? Can an observer identify real or objective relations between natural and social phenomena? The reason for pausing to think about epistemology is that there are some key arguments about what constitutes a valid knowledge and evidence for the practice of public health. It's important for you to think about your own ideas and approaches, as these will affect how you engage with and interpret participatory approaches. Epidemiology and public health are based in a largely biomedical paradigm with disease seen as the result of disordered functioning at various molecular and structural levels. Little reflection occurs on the epistemology of our discipline. We work with a notion of objective evidence and rationality to be discovered and codified into laws much like those in physics. In epistemological terms, this is described as a form of positivism. Advocates of participatory approaches often question positivism as a dominant epistemology, and stress the value of knowledge that comes from lived experience of patients and communities. Participatory approaches frequently include qualitative research methods. These often include an interpretivist view of the world, emphasizing the social construction of knowledge over the discovery of an objective truth in social phenomena. There are many and varied views on these philosophical questions, and you can read more about them from the links provided in the resources pages. For now though, you should be able to broadly summarize the key differences as shown in the table in the reading. Of course, the distinctions between these two positions are not often that clear cut, and many academics sits somewhere in the middle. While these two broad camps are a useful starting point for how you might think about knowledge, there are a diversity of epistemological positions, including Marxist, feminist, and post-colonial epistemology, which address the politics of knowledge and power, and consider the relationship between them. They are consciously liberatory. In public health, it's important to recognize that evidence does not sit independently of the social context in which it's generated. For example, the evidence base for preventing dementia has come largely from studies of pharmaceutical interventions, drugs that might reduce risk. Results have been very disappointing. Dozens of trials and millions of dollars have been spent generating this knowledge, which is, that there is no effective pill to prevent dementia. In contrast, there have been relatively small number of trials of interventions targeting social and behavioral determinants of dementia. A few of these, such as the FINGER trial are promising, and are now being expanded. The point to recognize is that our knowledge or evidence comes from a particular set of research methods and priorities. These are determined by those who control the resources and the funding allocations. This rarely includes patients and impoverished communities. Adopting a participatory approach to public health doesn't mean rejecting the objectivity of scientific method in biomedicine, but it does apply a particular epistemological stance, one that values knowledge produced from lived experience as equal to that produced in the academy, and in doing so, expands the traditional notions of expertise. Participatory approaches are thus often associated with both interpretivist and liberatory epistemologies. Participatory approaches are generally based on a set of underlying assumptions about the world and how it should be studied, for example; the primary underlying assumption is that participation on the part of those whose lives or work is the subject of the study fundamentally affects all aspects of the research. The engagement of these people in the study is an end in itself and is the hallmark of participatory health research. In planning and delivering participatory projects, the social position of the practitioner and how they interpret the world is important to consider. This is called reflexivity. We must also think about the relationship between the researcher and the researched, and the social and historical conditions in which the research is produced. These considerations often mean that participatory approaches lend themselves to a more interpretivist perspective. Health research often aims to generate generalizable knowledge to develop standardized interventions that can be replicated in similar local settings. By contrast, participatory approaches give primacy to local context. As you now know, the learning and action of participants is a key principle of participatory research. This means that replicating models is not so easy, and scaling up findings has yet to be resolved at the conceptual and practical level. The International Collaboration for Participatory Health Research invite us to think about scaling across a concept from community development. They say that scaling across happens when people create something locally and inspire others to carry the idea home and develop it in their own unique way. Our challenge in public health then is to be able to incorporate different kinds of knowledge and evidence that are appropriate to complex questions. The standard hierarchy of evidence in clinical research places meta-analysis of randomized controlled trials at the top. These are rarely appropriate for complex interventions and health services research where other approaches are needed; ones which can take into account local specificities, including social and cultural factors. Throughout this course, you'll be looking at how to include participatory approaches in your public health practice alongside conventional, epidemiological, and molecular methods appropriate to the question in hand.
