Who knows what in mental health? The project

In this post, Lisa Bortolotti interviews Roy Dings and Linde van Schuppen on their new project, Who knows what in mental healthcare. To stay tuned on their project, follow them on Bluesky, or join their LinkedIn group.

Doctor or patient: who is the expert?

Lisa: How did you get interested in “Who knows what in mental healthcare”? 

Roy: Trends such as democratization of knowledge and increasing distrust in traditional ‘experts’ have made the question of ‘Who knows what?’ in mental health care an urgent one. Dutch mental health care is rapidly transforming to integrate so-called ‘experts-by-experience’ in health practice and organization. But what does an expert-by-experience ‘know’?

I got particularly interested when my wife was asked to help set up a training program for expertise-by-experience at a university of applied science. When I’d ask her about it, she would regularly talk about ‘experiential knowledge’ and as a philosopher, I was immediately intrigued. I would ask “What do you mean by that?” but she, nor her colleagues, could give me an answer that I found satisfactory from a philosophical point of view. 

Recent studies confirm that definitions of experiential knowledge are typically lacking and, when provided at all, relatively uninformative. For instance, people may define experiential knowledge simply as ‘knowledge derived from personal experience’ or ‘knowledge that is lived through’. But what exactly is this kind of knowledge that we gain from experience, that cannot be obtained by reading a book, or practicing skill? What makes it so that it cannot be obtained in any other way? And to what extent can such knowledge be transferred to a person that has not lived the experience itself?

When I talked about these open questions with people in the field of expertise-by-experience, many of them seemed to cherish the ‘mysterious’ nature of experiential knowledge and found that answers could fundamentally not be put into words. Some added that I represented a ‘typical academic’ in my emphasis on conceptual rigor. They would sometimes discard what I had to say on the basis of me being an academic, and therefore a part of the system that the movement of expertise-by-experience is trying to change. I could understand this, and even felt that this was justified to some extent, but I also worried that this attitude (of being reluctant to elaborate on what is meant, precisely, with experiential knowledge) would be detrimental to the movement in the long-run.

At this point, I had already developed some strong intuitions myself – that expertise-by-experience is indeed vital to mental health care, that experts-by-experience do add something valuable, complementary and possibly unique. But I too struggled to explicate what this experiential knowledge consisted of. And so, as an ally, I felt that it had to be clarified in order to convince our ‘opponents’ (scientists or clinicians who are critical and dismissive about experiential knowledge ). Importantly though, given that experiential knowledge is ‘the new kid on the epistemic block’, I also felt that it was up to proponents of this concept to elucidate it. 

Linde: I had seen Roy working on the topic for a while before I joined the project. By that time, we had already had some lively discussions about the subject, and we still do! It is not a topic that is easily exhausted.

Linde van Schuppen

Lisa: What are the aims of the project?

Roy and Linde: The ultimate aim of our project is to provide some conceptual tools that allow various parties in mental health care to tackle implementational questions. The main question that people have been addressing has been something to the extent of ‘Should people with lived experience be included in mental health care, policy organization and science?’, where proponents respond with a ‘Yes, because they add experiential knowledge’, opponents counter with ‘No, their contribution remains unclear’. 

However, implementation-focused discussions take the affirmative answer as a given, and shift the emphasis to ‘HOW should we include people with lived experience’? That is, what roles should experts-by-experience play, exactly? How should disagreements between, for example, clinicians and experts-by-experience in practice be resolved? How can we substantiate the value of their input in everyday practice? In order to answer these questions, we need to understand what experiential expertise and knowledge consists of. 

In a recent paper, we distinguish between a descriptive and a normative challenge. The descriptive challenge is to clarify what the unique and complementary epistemic contribution is of people with lived experience, precisely. In other words, it aims to get clear on what experiential knowledge or expertise-by-experience consists of. In addition, the normative challenge asks how we should evaluate the contributions of people with lived experience. We think there are a number of normative issues related to expertise-by-experience that often get ignored in this field, such as whether and to what extent a person with lived experience can speak ‘on behalf of’ another group of people who have more or less similar experiences. 

Importantly, the project also aims to oscillate between fairly practical issues (such as implementation and suitable tasks for experts-by-experience) and theoretical ones (such as whether and to what extent can we disentangle strictly epistemological or phenomenological analyses from more political and ethical ones). For this reason, we are also very keen to connect to the EPIC project, given that epistemic injustice and expertise-by-experience have some interesting but underexplored connections.

This brings us to a last set of aims for our project: on the one hand, we are trying to ‘pioneer’ some of the dimensions of the phenomenon of expertise-by-experience. That is, rather than providing a ton of answers, we are also still in the phase of identifying the right questions. On the other hand, we are trying to bring together experts from a range of fields who have meaningful things to say about the complex phenomenon of expertise-by-experience (including phenomenologists, epistemologists, ethicists, but also clinicians, cognitive scientists and of course experts-by-experience). In order to enable the creation of this kind of epistemic community of sorts, we organize a variety of events, which we hope will result in establishing an international ‘network’ of interested and collaborating experts.

Lisa: Do you consider the project interdisciplinary? What are the methodological challenges you envisage?

Roy and Linde: We definitely consider the project to be interdisciplinary. We are combining many different points of view: different domains of philosophy, clinical perspectives, experts-by-experience and some narrative and cognitive linguistic theory as well. 

It is also interdisciplinary in a more methodological sense. For starters, it is philosophical, as it tries to elucidate the ways in which we can meaningfully connect experience to various forms of knowledge and expertise (e.g. by drawing on epistemology, phenomenology and philosophy of mind and science). But we are using qualitative empirical methods as well. 

Experts-by-experience can add a lot to scientific research practices – not only with regards to the substantive contributions they make to theory forming about that which they have experienced, but also since they might have specific sensitivities about what is relevant and meaningful when looking at data. We will be working with several experts-of-experience throughout our project, both in the role of fellow researchers, and as interviewees.

An obstacle that we aim to overcome by being interdisciplinary, is that lay people and experts-by-experience are obviously not ‘trained’ in e.g. epistemology (or abstract thinking in general). As a result, when you simply ask experts-by-experience about what experiential knowledge is according to them, then you either get responses that mimic what those experts-by-experience were told during training (as in this study), or you get mixed responses, where experts-by-experience disagree whether they should be called experts or possess knowledge at all (as in this study). 

These studies hinge on the premise that lay people are able to explicate and articulate a very abstract thing, namely to offer an account of what a certain type of knowledge consists of. Philosophers themselves have struggled with the question of what experience teaches for decades, so we cannot reasonably expect lay people to solve this puzzle on the spot. 

Now, our project aims to bypass this obstacle in two ways. First, we rely on semi-structured interviews to ask various parties (not only experts-by-experience, but also other mental health professionals) what they think experiential knowledge consists of, but ask a lot more (philosophy-based) follow-up questions. Second, and more importantly, we try to explicate what experts-by-experience implicitly think about experiential knowledge. On the one hand, we want to ask them to provide concrete examples of cases where they feel their experiential knowledge was of real added value, or where they experienced conflict between perspectives in everyday practice. 

We aim to deduce from those examples some characteristics of the knowledge at stake. On the other hand, we also aim to use tools from linguistics to analyze testimony of experts-by-experience, patients (i.e. who have not been trained as experts-by-experience) and professionals, to again explicate the epistemic contributions that are taken to be at stake. For instance, we are now exploring the use of linguistic ‘certainty markers’ to explore what claims experts-by-experience are more and less certain about with respect to certain elements of illness or recovery. The idea is that the more conviction we feel about a certain claim, the more we consider it to be knowledge.

Finally, we will have Nina de Boer starting an associated postdoc project in October. Nina will explore whether and to what extent we may clarify experiential knowledge with tools and concepts from complexity science, premised on the idea that experts-by-experience seem able to “grasp” the complexity involved in mental illness from a first-person or tacit perspective.

Roy Dings

Lisa: What impact would you like the project to have on mental healthcare? 

Roy and Linde: We hope that a more solid (conceptual) foundation for expertise-by-experience will allow for a significant and long-term impact on the field. It will enable us to establish the importance of an integration of experts-by-experience in mental health care and in the decision-making bodies of institutions. 

We also hope to help shape epistemic practices in a way that provides tools to experts-of-experience to navigate difficult contexts in their everyday work. The vague expectations that professionals have around their role, can result in uncomfortable situations for them. Experts-by-experience can for example be expected to speak for people they are not comfortable speaking for, or put on the spot in sharing vulnerable experiences in a context that doesn’t facilitate them feeling safe. 

Some clarity on why expertise-by-experience should be involved in task A and role B, but perhaps not in task A and role B (which are better left to other epistemic parties, such as professionals or scientists), or in what context certain roles ‘work’ for them as well, might help to improve this. 

We also hope that a solid conceptual foundation can help bring confidence to experts-of-experience in these situations, and in general: you have something very valuable to bring to the table, and it is not vague, or up for discussion, and you are the best person for this task.