The patient voice in psychiatry: not heard, co-creation, co-optation or parallel organisation?
Background A key ethical issue in psychiatry concerns the relationship with patients. A central dilemma is that experiential knowledge (regarding existential recovery) and professional knowledge (the framework of specific-medication-for-specific-brain-disorder) are not easily integrated into a practice of co-creation.
Aim To describe the status quo in health care and science.
Method Qualitative review.
Results Under the influence of critical psychiatry (‘antipsychiatry’), the recovery movement, the voice hearing movement and open science, the patient voice has gained influence while the scientific framework of academic psychiatry/psychology is critically re-examined. Co-creation in mental health services is limited whilst parallel development is more successful. For example, experience-based recovery academies are developing primarily in the domain of social care whilst evidence-based specialist treatment remains the norm in mental health services. There is, however, a growing call for co-creation around recovery-oriented work in the mental health sector, despite limited institutional readiness. There is also a growing movement of user research responding to epistemic injustice and driving patient-driven innovations – although sometimes on the basis of appropriation without source awareness.
Conclusion Experiential knowledge is growing as the theoretical framework of psychiatry is in the process of change. This creates the conditions for co-creation of a new values-driven psychiatry.