Researchers urge institutions to treat lived experience as expertise

Researchers Snita Ahir-Knight and Hazel Godfrey are calling for institutions to treat lived experience as a form of expertise, not just as personal testimony. Their argument matters as health agencies, universities and government bodies increasingly ask patients, disabled people and communities to help shape services and research.

Writing in The Conversation, Ahir-Knight and Godfrey said institutions now make more space for lived experience through patient advisory panels, public policy consultations, peer support roles in Health New Zealand and university research projects. But they said that participation often remains lower in status than academic research, professional training or technical knowledge.

The researchers define lived experience as knowledge built through repeated contact with systems and everyday conditions. People who have dealt with psychiatric services, disability barriers, poverty, racism, migration processes or violence can develop practical understanding of how institutions operate, they said.

Ahir-Knight and Godfrey said that kind of knowledge can reveal issues that formal training may not fully capture. They cited examples such as disabled people’s understanding of access and workarounds, and people using psychiatric systems developing insight into coercion, risk and care.

Health complaints show both value and limits

The researchers pointed to a recent Health and Disability Commissioner report on complaints from disabled people, or tāngata whaikaha, about health care between 2023 and 2025. According to Ahir-Knight and Godfrey, the report described problems including people not being heard, being dismissed, encountering barriers and receiving care that did not meet basic rights.

They said the report shows how formal complaint systems can make lived experience visible. At the same time, they warned that such systems reflect only the experiences of people able to use them.

Ahir-Knight and Godfrey said many people lack the time, confidence, energy or knowledge needed to pursue complaints. For that reason, they argued, institutional collections of lived experience can be partial even when they are valuable.

From consultation to shared authority

The researchers said the issue is not whether institutions should include lived experience, but whether they give it real weight. In their view, research should be developed with communities, policy should move beyond consultation, and health care should treat lived experience, trust and knowledge as central to decisions.

They said lived experience could shape research agendas, policy design and university teaching. They also argued that people with lived experience should be recognized as knowledge contributors rather than treated mainly as participants who provide stories.

Ahir-Knight and Godfrey said universities, professional organizations, government agencies and research systems often privilege credentials, technical language and professional distance. Those norms, they argued, influence who is considered credible and what is accepted as evidence.

The researchers also warned that institutions may prefer lived experience when it is orderly, inspirational or emotionally moving. That approach can leave people sharing painful experiences without much control over how those experiences are interpreted or used, they said.

Ahir-Knight and Godfrey said lived experience should not replace research or professional expertise. Their argument is that institutions should question why some forms of knowledge carry more authority than others and should create roles, pay structures and decision-making processes that recognize lived experience as expertise in its own right.

This story draws on original reporting from Medical Xpress.