Why is Lived Experience Inclusion Essential to Mental Healthcare? Philosophers Weigh In

The emerging philosophy that positions former mental health patients as crucial contributors to the field is gaining momentum and scrutiny.

In a compelling new study published in Philosophical Psychology, Roy Dings and Şerife Tekin explore the philosophical underpinnings of a movement transforming mental health care. Focusing on the healthcare system of the Netherlands as an example, the article highlights the main conceptual and epistemological challenges of the movement.

Dings, a postdoctoral researcher at Ruhr-University Bochum, and Tekin, an Associate Professor of Philosophy at the University of Texas at San Antonio, engage in a nuanced debate on the role and recognition of ‘Experts-by-Experience’—individuals whose personal encounters with mental health issues provide them with unique insights into care practices.

The involvement of service users in mental healthcare has proven effective and ethical. In recent years, there has been an increase in the integration of experts by experience (exp) in mental healthcare. These experts are people who have personal experience with mental illness and can provide valuable insights beyond academic and biomedical knowledge. Despite its growing popularity, there has been little exploration, philosophically and practically, into the role and contributions of these experts in mental healthcare.

Although it varies across different institutions, there are a variety of roles that former patients can have in mental health care settings. For example, supporting patients, offering advice, performing research from an experiential perspective, distributing information, and contributing to policy making. There is still limited data on the subject. However, initial research has shown promising results regarding relationships between Exp and current patients, such as an increase in empowerment, fewer self-reported symptoms, and overall better quality of life.

The movement is based on the idea that those who have suffered, lived, and recovered from an illness gain a unique type of knowledge that they would otherwise not have if they had not experienced it. Based on the Netherlands example, experience-based-expertise is when an experience serves as the source of truth and leads to experiential knowledge that may be developed into the competence of experiential expertise.

The authors outline challenges to the movement relating to the ambiguity of the role and contributions of Exps and use a philosophical analysis to open the conversation for how the movement can fully realize its goals and have a positive impact.  

“The origins and properties of what can be grouped under the label of the Expertise-by-Experience (ExpEx) movement are complex, as it is not a homogeneous group with clearly defined shared goals and orientations. Rather, it contains many subgroups and movements, including but not limited to the Mad Studies Movement and the consumer/survivor/ex-patient/service user movement that have emerged at different times and in different places,” Dings and Tekin write.

“Yet, central to the development of the ExpEx movement is the reevaluation of the concept of expertise: Who is an expert on what? What special value do patients or Experts-by-Experience have for theoretical frameworks on mental disorders, mental health care, policy, and administration? How do and should Experts-by-Experience (Exp) interact with other experts in the context of scientific research.”

Dings and Tekin argue for a framework that acknowledges the subjectivity of patient expertise while fostering its integration into mental health care, policy-making, and organizational structures. Through this lens, they illuminate the intricate dance between personal experience and professional knowledge, challenging the philosophical status quo and championing a model that marries human rights with mental health research.

They begin with a thought experiment:

“Imagine the following hypothetical scenario: Sarah is often called an expert on depression: after all, she graduated from medical school and has a PhD in neuroscience. She knows all theories of depression, whether biological, psychological, or social. Thus, she knows all there is to know about depression – its genetic and neurological underpinnings, its developmental origins, its relation to stress, the role of particular neurotransmitters, and so on. Sarah has run many clinical studies; she has conducted numerous in-depth interviews with patients (and their families and friends) and has years of clinical experience treating patients diagnosed with depression. Yet, at some point, she herself becomes depressed. Does Sarah learn something new about depression after becoming depressed herself?”

Thought experiments in philosophy are often regarded as powerful tools that reveal our beliefs or thoughts about specific phenomena or experiences. In this context, the author uses a thought experiment to prompt an intuitive recognition that “Sarah, having lived through the depression, possesses knowledge that she did not have before her experience.” This insight forms the cornerstone of the article, probing into the unique and invaluable understanding Sarah gains from her firsthand encounter with depression.

Challenge I: How Experiential Knowledge Is Gained

The first challenge the authors address is what “experience” means and how it translates to experiential knowledge and expertise. Through a consideration of philosophical debates on the phenomenal aspects of experience, the authors make sense of the following conceptual problems.

It is not clear whether a person’s “experience” in ExpEx is about how they encounter something or if it is what they encounter that matters. The “experiences” often pertain to the process of recovery, which becomes unclear when considering experiences such as autism that do not operate under the same temporality as other experiences such as depression in terms of “recovery.”

Additionally, the authors approach issues with the classification of illness through a philosophy of science lens. The major challenges are with the reliance on DSM classifications for the basis of someone being an Exp, which requires a reified portrayal of a particular illness, and DSM classifications do not account for the complex and multifaceted experiences people who are diagnosed with the same disorder may have. Furthermore, the phenomenology of experience is complicated as people interpret themselves through the lens of their diagnosis.

Challenge II: Objectivity-Subjectivity Debate

The second challenge the authors point out is related to worry over the subjective viewpoint of individuals impacting the scientific process, which has a goal of maintaining objectivity.

In response, the authors apply tools from the philosophy of science that reframe the objective-subjective dichotomy. Tekin argues that the subjectivity of experience in psychiatry is an asset since patients understand the challenges associated with mental illness, they can report on responses to different treatments, they understand how illness might affect various aspects of their lives, and they understand how the scientific framing of their mental disorder affects the kind of interventions they receive.

Tekin has her own concept of objectivity, called “Participatory Interactive Objectivity,” which embraces patient inclusion, described as: 

“Psychiatry is a form of social epistemology, i.e., a collective enterprise shaped by a variety of scientific, medical, and testimonial practices that aims to develop knowledge on effective treatments for mental disorders. Building on the feminist philosophy of science, Tekin conceptualizes science as a community activity and takes this social feature of science to be necessary for the objectivity of scientific inquiry.”

Based on this concept of objectivity in psychiatry, not only is the perspective of former patients as experts helpful, but necessary.

Challenge III: Conflicts between Exps and Other Experts

The final challenge outlined in the article is that of addressing disagreements between Exp and other experts. Building off Tekin’s concept of Participatory Interactive Objectivity, this problem can be alleviated by embracing group discussion and disagreement, as decision-making should include patient experts, other experts, and current patients.

They acknowledge initially that the role of exp in mental healthcare settings is still being debated. However, a concrete notable advantage is that relationships between exp and patients may be mutually empowering. The disadvantages, on the other hand, are more philosophical in nature. In particular, the underlying assumptions of exp can create rifts between exp expertise and other expertise.

Dings and Tekin propose an enactive affordance-based framework to provide a clear understanding of the goals of the Experience-based Expertise movement. This framework aims to overcome current conceptual and epistemological challenges and pave the way for its growth.

An enactive framework takes the body, mind, world, and experience as an integrated whole and highlights the interconnectedness of the mind and social world. Affordances, defined as possibilities for action offered by the environment, can serve as a bridge between the subjective and objective and allow for an understanding of how a person’s lifeworld changes in the context of mental disorders and treatment. An affordance-based framework has the following impact on ExpEx:

“People who share a field of affordances or lifeworld have a common understanding that they communicate with others due to shared background. On this view, then, the expertise at stake in ExpEx does not rely on ‘knowledge’ in a more positivistic sense, but on a responsiveness to particular affordances. Having undergone a particular experience transforms one’s responsiveness to aspects of the social, material, and linguistic environment. This person’s field of affordances then matches (or approximates) the field of affordances of someone in the same predicament, enabling them to communicate in a way that someone who has not undergone the experience (i.e., with a very different field of affordances) could not.”

In other words, our perception of the world is shaped by the field of affordances we experience. This is not solely a subjective process but is grounded in our interactions with the social and material world. Instead of viewing experiential and scientific knowledge as binary opposites, the enactive affordance model views them as points along a continuum. It acknowledges that all knowledge is grounded in embodied experience while recognizing that experiences can be systematically studied and understood through scientific methods.

By acknowledging the legitimacy of both forms of knowledge, the enactive affordance model allows for a dialogue where experiential knowledge informs scientific inquiry and scientific methods contribute to a deeper understanding of individual experiences. This mutual informing can lead to more nuanced and effective mental health interventions that are grounded in the reality of patients’ lives.

The model encourages a collaborative approach to knowledge creation, where professionals and individuals with lived experience work together to co-create an understanding of mental health issues. This co-creation respects and utilizes the strengths of both experiential and professional knowledge.

The authors provide a compelling case for integrating lived experiences into mental health care, arguing that these personal insights offer invaluable perspectives that cannot be replicated through academic or clinical knowledge alone. They contend that individuals with personal experience bring a depth of understanding that enriches mental health practices, policy-making, and organizational frameworks. This approach not only aligns with human rights principles but also enriches the mental health research paradigm, bridging the gap between experiential wisdom and professional knowledge.

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Dings, R., & Tekin, Ş. (2023). A philosophical exploration of experience-based expertise in mental health care. Philosophical Psychology, 36(7), 1415-1434. (Link)