Who knows what in mental health? The conference (part one)

Radboud University hosted a conference on 11th and 12th June 2025 examining the interplay between the study of epistemic injustice and the debates on expertise by experience in mental healthcare. This is a brief report of some of the talks presented on the first day of the conference.

From the poster of the event

Roy Dings (one of the organisers together with Linde van Schuppen and Derek Strijbos) kicked off the event with a brief introduction to the motivation for a more in-depth analysis of experiential knowledge.

Roy Dings on experiential knowledge

First keynote talk was by philosopher of science and psychiatry Şerife Tekin. She started her presentation discussing sources of knowledge in psychiatry, including intervention-oriented science, clinical practices, cognitive science research, and self-related resources (self-reports). Self-related phenomena have been traditionally undermined.

Şerife Tekin and the cover of her new book 

Tekin argued that one problem is that the self has not been considered a legitimate topic of psychiatric investigation and this suggests that studying the self is not scientific. Another problem is that self reports are considered to be unrealiable due to the wide presence of biases and confabulation. Next, there are concerns about internet self diagnosis (what Tekin calls the TikTok problem) as some people see their entire identity as defined by the diagnosis they have and this does not offer insight into their own specific experiences. Finally, there is an objectivity problem: it is often thought that self reports are subjective and don't deliver the type of knowledge we need.

Tekin proposed a new model to represent the various facets of the self in experiential experience (physical, social, conceptual, narrative, and experiential). This model is a model of the patient that can offer responses to all the challenges usually faced by experiential knowledge. Even if self reports by themselves have epistemic limitations, it is by engaging with such reports that we make progress with understanding what people are going through.

Dings on the Attuned Responsiveness framework

The next talk was by Roy Dings and Derek Strijbos. They started asking what an expert by experience can contribute: what is unique and valuable about their contribution. Dings observed that it is not easy to be explicit about what it is that we should add to experiential knowledge to obtain expertise. So he developed with Strijbos a new framework called Attuned Responsiveness. One element is responsiveness: things matter to different people in different ways (what we notice and why) and a number of factors can be relevant (biology, culture, experience, self-reflection).

The other element is attunement: this is about being responsive to other people's responsiveness (being open) and about being active (making an effort to bridge dissimilarities in responsiveness by asking questions). Attunement is a core aspect of everyday social expertise but between people with lived experience there may be fewer dissimilarities. So we should include people with lived experience in psychiatric knowledge because they notice the right things and find the right words.

Strijbos on how to reconcile different types of expertise

Strijbos argued that experiential knowledge is not just knowledge of one's own experience. It is the acquisition of perceptual and agential skills that bring epistemic benefits and have an impact on how one addresses problems. What experience does is increase attuned responsiveness, in a way that would be hard or impossible to achieve in other ways (with more depth and detail). This framework can also explain and help tackle conflict among experts: different experts can be responsive to different aspects of a situation.

After lunch, Themistoklis Pantazakos presented on the scope of epistemic injustice in psychiatry and discussed the debates about whether the construct is useful when applied to interactions between healthcare professionals and mental health patients. There is a lot of push back against the overapplication of the notion of epistemic injustice to the mental healthcare context, based on criticism about some cases that are considered paradigmatic.

Pantazakos on the debate on testimonial injustice

Pantazakos argued that testimonial injustice in psychiatry is predominantly about the person's phenomenological experience: the patient is an authority when it comes to what it is to be them. Most of the cases cited as cases of testimonial injustice in psychiatry are not cases of phenomenological epistemic injustice and they are not even cases of testimonial injustice so the notion of testimonial injustice is not compromised by the failure of these cases to be convincing.

Next talk was based on the methodological assumptions embedded in the political turn in analytic philosophy: the claim to be assumed is that lived experience enables the acquisition of knowledge and is authoritative, and the philosophical work is to explain why this is the case. The authors of the paper, Cristina Borgoni, Miguel Núñez de Prado, Manolo Pinedo, contended that neurodivergent people face systematic barriers in making contributions to collective knowledge. The discussion analysed some of these barriers. 

Miguel Núñez de Prado presenting at the conference

The more constructive part of the talk proposed that we move beyond the concept of experiential knowledge and focus on the pluralism of types of knowledge, using instead the concept of knowledge by lived experience. Knowledge by lived experience is a distinct type of knowledge that arises from having a specific lived experience although what is known may not be itself part of the experience. Often this involves interlocking self-knowledge and knowledge of a specific situation or condition. Authority comes from self-knowledge and standpoint: questioning self-knowledge attributions is an ethical and an epistemic wrong and there is no such thing as neutral reason-giving, so being perspectival is not just inevitable but constitutive of knowledge.

Lubomira Radoilska started with a quote from Elyn Saks' memoir, The centre cannot hold, to exemplify what expertise by experience might look like. This prompted a detailed analysis of lived experience as a form of knowledge by acquaintance that, in the mental health context, comes with a credibility deficit due to stigma. Calling lived experience a form of expertise could serve as a way to counter the deficit. But there are also cases (extracted testimony) in which drawing from lived experience as a source of authority means that the reporting of the experience in situations of duress is attributed a credibility excess, and outweighs independent, conflicting evidence.

Lubomira Radoilska on the zetetic model

Radoilska developed an account of a ‘zetetic’ initiative showing that a shift of focus toward norms of inquiry would better support a sustained resistance to epistemic oppression than further attention to general epistemic or evidential norms. This is because the zetetic initiative emphasises the ongoing exercises of epistemic agency by marginalised inquirers with lived experiences rather than their pre-existing experiential knowledge as a resource they could share with, or transfer to others. The notion does justice to the dynamic and creative aspects of epistemic advantage gained in circumstances of social marginalisation, in contrast to the static habits of thought that help maintain ignorance of social privilege, e.g., effortless belief that everything is as it appears to be.

Slide on empathy by Julian Kiverstein

The final talk of the day was by Julian Kiverstein who focused on the ameliorative project: how to improve the lives of people with mental illness. The starting point is that lived experience escapes operationalisation and psychiatric knowledge is based on operationalising mental disorders (e.g. in the DSM). So lived experience is the blind spot. One account Kiverstein challenges is that by Matthew Broome and Lucienne Spencer who criticise radical empathy as an appropriation. According to Kiverstein, radical empathy is not a case of appropriation but encompasses the skill of active listening, and the virtues of humility, curiosity, and diligence.

The discussion throughout the day was very inspiring and helped bridge different approaches to experiential expertise and different philosophical frameworks.

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.

International Network for Philosophy and Psychiatry 2025

Members of the Project EPIC symposium at INPP 2025 (from left to right):
Jodie Russell, Matthew Broome, Elisabetta Lalumera and Lara Calabrese 

From the 29th - 31st of May 2025, members of team EPIC attended the 26th annual conference for the International Network for Philosophy and Psychiatry at the University of Leipzig and delivered a symposium based around core chapters in our recently published, open-access book. The conference involved many parallel sessions with amazing talks from established academics and early-career researchers alike. We've provided a bite-sized summary here of our EPIC symposium.

Panel discussion

The symposium was introduced and chaired by Professor Matthew Broome, project EPIC co-investigator at the University of Birmingham (pictured far right), who introduced the project as a whole as well as some of the background to epistemic injustice and related projects himself and Co-I Lisa Bortolotti have worked on. The latter research involved qualitative investigations into epistemic injustice and voice-hearing and work on enhancing agency in youth mental health.

This lead neatly into the first talk of the symposium by EPIC research fellow Dr Jodie Russell at the University of Birmingham titled "Young People with Psychosis at the Intersection of Identities" (pictured below).

Jodie's presentation

Jodie explained to delegates some of the philosophical thought involving her investigation into epistemic injustice among young people with psychosis. She noted that her population of study are likely to have multiple intersecting identities, many of which may be marginalised. Jodie then introduced the phenomena of "intersectional invisibility" whereby individuals become structurally invisible with respect to one or more of their identities because of the other identities they belong to. This is due to the fact that having other group identities may make you an 'atypical' member of other group identities.

Jodie's hypothesis is that many of her participants are likely to feel intersectionally invisible; she notes that there are various demographic features of the population she's studying that make them unique. For example, the population of Birmingham is ethnically diverse, young and religious compared to the rest of the country. 

The city also has one of the highest incident rates of psychosis, and psychosis itself is over-represented by individuals from Black, Asian and Minority Ethnic (BAME) backgrounds. Moreover, the prevalence of psychosis among young people is relatively small compared to other mental disorders. When it comes to mental health research, then, Jodie suggests that it may be a challenge to recruit these participants and address epistemic gaps when potential participants might see themselves as not belonging in certain epistemic spaces (e.g. at universities, among other young people, or other people with mental disorder).

Lara's presentation

This talk was followed by Dr Lara Calabrese (pictured above), Research Fellow and EPIC Research Assistant at the University of Bologna, who discussed the results of her scoping review on epistemic injustice and dementia and outlined the next steps for her qualitative study. Lara noted that people with dementia are particularly vulnerable to epistemic injustice; this is because, in part, Lara notes, of the symptoms of dementia themselves. 

Under the traditional view of dementia, many symptoms are understood as meaningless and the result of brain damage rather than, as on the person-centred view, meaningful communications. Lara notes that many people with dementia are not involved in their won care decisions (as in Advanced Care Planning) and the diagnosis might not be communicated directly to the person with dementia themselves. Epistemic injustice, therefore, may interfere with many of the basic rights of people with dementia.

In Lara's scoping review of the topic, she uncovered 5 key themes: 

1. Theoretical models and perspectives that apply epistemic injustice to dementia
2. The exclusion of individuals with later stages of dementia from research
3. Institutional exclusion of certain individuals with dementia as representative of dementia
4. The ethical implications of epistemic injustice for Advance Directives for people with dementia
5. The impact of media representations of dementia

Elisabetta's presentation

The symposium was then drawn to a close with the final talk by Dr Elisabetta Lalumera (pictured above), Associate Professor of Philosophy at the University of Bologna and EPIC project partner. Elisabetta's talk, titled "Ameliorating epistemic injustice with digital health technologies", made the case for the promising use of artificial intelligence to overcome knowledge-based injustice often perpetuated by human clinicians and care-givers. She notes, for example, the use of technologies in healthcare already that have brought patient benefits, such as the use of self-tracking apps. Elisabetta notes, however, that there is still the possibility that technology can perpetuate epistemic injustices (which has been pointed out in the literature). 

Nevertheless, Elisabetta suggests that this might primarily be due to the application of assistive technologies themselves, rather than inherent bias; for example a patient's claims might be undermined because the assistive technology is given epistemic priority over patient testimony by the clinician themselves. She also notes an unequal level of transparency between patient and clinician when assessing the claims of assistive technologies because clinicians are likely to have a better understanding of how the technologies work. 

While much work needs to be done to address implicit biases in the data sets that AI are trained on, AI can nevertheless be a fruitful tool in the way that it is 'rigid' and applies the same criteria to everyone, regardless of gender, race and class. This technology should be used to support and validate, not replace the patient's experience.