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

**Authors:** Anne‐Marie Gagné‐Julien, Phoebe Friesen

PMC · DOI: 10.1002/hast.70051 · The Hastings Center Report · 2026-03-16

## TL;DR

The paper argues that people with mental health experience should be meaningfully included in revising the DSM to avoid tokenism and improve inclusivity.

## Contribution

The paper introduces practical recommendations for improving inclusivity in the DSM revision process by addressing risks like tokenism.

## Key findings

- Current DSM revision efforts lack meaningful inclusion of people with lived experience.
- Advocates for inclusivity have overlooked risks like tokenism and poor uptake of input.
- Disentangling inclusion reasons can help address these issues in DSM revisions.

## 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.

## Full-text entities

- **Diseases:** DSM (MESH:D001714), -5 (MESH:D008232), schizophrenia (MESH:D012559), Depression (MESH:D003866), mood disorders (MESH:D019964), Mental Disorders (MESH:D001523), obsessive-compulsive disorders (MESH:D009771), addiction (MESH:D019966), Psychotic Disorders (MESH:D011618), DSM-V (MESH:D015419), mental distress (MESH:D012128)
- **Chemicals:** DSM (-)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## References

60 references — full list in the complete paper: https://tomesphere.com/paper/PMC12992670/full.md

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Source: https://tomesphere.com/paper/PMC12992670