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March 19, 2026The Hastings Center Report3 citationsOpen Access

Why Should People with Lived Experience Be Included in the DSM Revision Process?

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AGAnne‐Marie Gagné‐JulienPFPhoebe Friesen

Key Points

  • To explore the necessity of including individuals with lived experience in the DSM revision process and address challenges related to tokenism and inclusivity.
  • Analyzed the psychiatric research and policy landscape regarding DSM revisions.
  • Identified challenges in current inclusivity practices.
  • Proposed practical recommendations for improvement.
  • Recognized that current DSM inclusion efforts are inadequate.
  • Identified risks such as tokenism in mental health contexts.
  • Suggested strategies to enhance the participation of individuals with lived experience.

Abstract

Increasingly, scholars and advocates are recognizing the importance of including individuals with lived experience of mental health issues in the development of psychiatric research and policy. Here, we hope to contribute to discussions regarding the specific context of the Diagnostic and Statistical Manual of Mental Disorders (DSM) revision process. We argue that this process is not inclusive enough, but also that those who have advocated for better inclusivity have not been responsive enough to the risks reported from other inclusive mental health contexts (in research, practice, and policy). In particular, tokenism and lack of uptake of input from people with lived experience are likely to loom large in relation to DSM efforts at inclusivity as well. In light of this, we suggest that disentangling the reasons for inclusion can help to overcome these problems, and we offer practical recommendations for a more inclusive DSM revision process.

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Cite This Study

Gagné‐Julien et al. (2026) studied this question.

synapsesocial.com/papers/69bb9336496e729e629812e5https://doi.org/10.1002/hast.70051
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