Why Democratize Psychiatric Research? A Call for Participatory Approaches

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Phoebe Friesen outlines six critical reasons why participatory research in psychiatry is essential for ethical and epistemic progress

Phoebe Friesen’s latest article in Philosophy, Psychiatry & Psychology underscores the urgent need for participatory research in psychiatry. By focusing on the lived experiences of service users, Friesen aims to shift the conversation towards a more inclusive and ethical approach to mental health research.

She writes:

“I hope to shift the discussion away from an exclusive focus on the impact of participatory mental health research, and toward a broad array of justifications that underscore the importance of including those impacted by research in the process itself. Building on decades of rich discussions of why ‘nothing about us without us’ matters in the field of psychiatry, this paper aims to illuminate the justifications underlying participatory research in psychiatry and how these justifications might shape participatory methodologies.”

Friesen argues that the integration of experiential expertise in psychiatric research addresses significant gaps and biases inherent in the field. She identifies six key features—three epistemic and three ethical—that support the necessity of participatory research. These include the irreducible value of patient experience, the extent of disagreement and uncertainty in psychiatry, and the value-laden nature of psychiatric knowledge. Ethically, she highlights the preponderance of harm in psychiatric history, denials of agency, and the constant struggle for power. Friesen’s work aligns with the growing global call for rights-based and holistic approaches to mental health care, emphasizing the transformative potential of inclusive research practices

There is a significant shift in mental health research where the lived experiences and expertise of service users are increasingly recognized as valuable. However, an insufficient understanding of why it is crucial has resulted in challenges that hinder meaningful collaboration.

Including lived experience experts has demonstrated the potential for profoundly impacting the mental health field, particularly in light of current debates and controversies surrounding research and treatment. Their involvement and contributions include leading research and programs, advocating for the rights of those most affected, and creating and promoting alternative service options and treatments.

Friesen warns, however, that there is insufficient philosophical analysis of why psychiatry should be democratized in this way. Thus, she responds to the question, paying specific attention to the timing and rationale behind participation research.

Understanding the reasons why is crucial, as they guide the nature of involvement in specific research projects and mitigate well-documented problems, such as tokenism and role confusion. She hopes this understanding can inform the conduct of participatory research and bridge the gap between a purely epistemic focus on impact and a broader recognition of who should have a say in psychiatry.

The following six epistemic and ethical features underscore the importance of engaging in more inclusive research:

Epistemic Features

  1. The Irreducible Value of Patient Experience

 Unlike other areas of medicine, psychiatric diagnostics and measurements rely on patient reports of their internal states. Thus, patients’ subjective experiences are central to research in psychiatry and warns that failing to involve patients increases the risk that outcome measures don’t represent patient interests.

Friesen writes:

“Measures of mental health are derived from patient reports and, if accurate, ought to correspond with them. This means that psychiatric research cannot occur without the voices of patients; the question is whether those voices will be treated as objects of inquiry or as contributors to that inquiry.”

  1. The Extent of Disagreement and Uncertainty in the Field

Many fundamental questions, commonly agreed upon in other areas of medicine, remain unanswered in psychiatry, and several substantial disputes exist in the field.

Friesen argues that these disagreements suggest that including service users is essential for “the success of the scientific enterprise as a whole” and that “it is important to allow diverse voices to contribute to the potential hypotheses and theories that will be contenders in the scientific process.”

Especially since the field’s narrow vision is exacerbated by funding’s influence, involving service users can identify problematic assumptions.

  1. The Value-Laden Nature of Knowledge in Psychiatry

There is a significant gap between available data and generated theories in psychiatry, which allows values and biases to influence it. Therefore, it is vital to engage diverse contributors to uncover and address flawed assumptions in theories, methods, and approaches within the field.

Acknowledging the role of values in psychiatry is crucial as it exposes the often overlooked subjective and directional aspects of research.

Ethical Foundations

  1. The Preponderance of Harm

There is a well-documented history of abuse within psychiatric research and practice. For example, numerous conditions are linked with reinforcing oppression, such as schizophrenia, borderline personality disorder, and gender dysphoria. Additionally, there is a heightened suicide risk for inpatient patients and police violence against those experiencing mental distress.

Friesen writes:

“Participatory research, when successful, can help to rebuild trust, rebalance power relations between those being researched and those doing the research, and help to ensure that such harms are not repeated in the future.”

  1. Denials of Agency and Epistemic Injustice

Psychiatric diagnoses are entangled with denials of agency, decision-making capacity, and rationality, which contribute to epistemic injustice within psychiatric care and the creation of psychiatric knowledge.

Irrationality and cognitive deficits, built into the very definition of mental disorders, quickly lead to excluding the contributions of psychiatrized individuals, even in the context of participatory research, if those contributing are not heard or valued.

  1. The Constant Struggle for Power

Movements such as the anti-psychiatry movement, recovery movement, consumer/survivor/ex-patient movement, mad studies movements, and mad pride all demonstrate the sociopolitical battle to recenter power in the field of psychiatry, as they are also struggles related to identity, recognition, and rights.

Friesen warns that within participatory research, service users can appear to be given a role in decision-making, but the authority remains in the hands of those traditionally in charge. Thus, she suggests participatory research governance, where those impacted by research are given a role in determining when and how it occurs.

In conclusion, Phoebe Friesen’s exploration underscores the critical shift towards integrating the lived experiences of service users in psychiatric research while addressing challenges and ethical imperatives that affect its success. She concludes her work with a list of questions derived from the above features, which may guide a researcher in considering the epistemic and ethical dimensions of the project:

“Is power truly distributed? Is the community involved the appropriate one? Are those involved diverse or merely an agreeable subset of patients? Are there opportunities to ask questions and identify assumptions or biases in the methodology or other aspects of the research?”

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Friesen, P. (2024). Why Democratize Psychiatric Research? Philosophy, Psychiatry, & Psychology31(2), 117–133. https://doi.org/10.1353/ppp.2024.a930487 (Link)

 

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Ally is pursuing a master's in interdisciplinary studies through New York University's XE: Experimental Humanities & Social Engagement. She uses the relationship between anthropology, public health, and the humanities to guide her research. Her current interests lie at the intersection of literature and psychology as a method to reframe the way we think about different mental states and experiences. Ally earned a bachelor's degree from the University of Minnesota in Biology, Society, & Environment.