Institutions increasingly invite people to contribute their lived experience. Government agencies appoint patients to advisory panels and call on communities for their views on policy. Health New Zealand employs peer support workers and universities seek lived experience in research. These initiatives acknowledge that lived experience matters. But there is a catch. In many cases, it is still treated as perspective or testimony rather than as a form of expertise. Research, professional training and technical knowledge continue to sit at the top of institutional hierarchies. Lived experience may be listened to, but it is rarely granted the same level of authority.
What Makes Lived Experience a Form of Knowledge?
This matters because lived experience is not simply a personal story. It is knowledge developed through ongoing learning that emerges from engagement with systems, institutions and the realities of everyday life. People navigating psychiatric systems develop understandings of coercion, risk and care that clinical training cannot fully capture. Disabled people develop expertise in access, interdependence and institutional workarounds often absent from policy. People living through poverty, racism, migration systems or violence develop deep practical knowledge of how institutions function, because life depends on it. This knowledge is not anecdotal. It is formed through sustained engagement with systems that shape everyday life – and it should be recognised as its own form of knowledge.
Challenging Knowledge Hierarchies
As lived experience becomes more prominent across healthcare, education and policy making, there are risks in not valuing it in the same way as research, professional and technical knowledge. A recent Health and Disability Commissioner report illustrates the tension. Drawing on complaints from disabled people (tāngata whaikaha) about healthcare between 2023 and 2025, it records familiar issues: not being listened to, being dismissed, facing barriers, and receiving care that fails basic rights. On one hand, this is lived experience made visible through formal systems. But on the other, it only reflects knowledge from those able to complain – people with the time, energy, system knowledge or confidence to navigate complaint pathways. Many voices are absent. Their experiences are not missing because they are less important, but because institutional routes are uneven and often inaccessible. Even when collected, lived experience is partial.
What Could Change if Lived Experience Were Treated as Knowledge?
It would reshape how knowledge is produced. Research would be built with communities, not just about them. Policy making would move beyond consultation towards shared authority. Healthcare would treat lived experience knowledge and trust as central. In practice, this would mean recognising people with lived experience as contributors of knowledge, from setting research agendas, to co-designing policy and leading university teaching. This reshaping is not about replacing other kinds of expertise but about questioning why some forms of knowledge are consistently treated as more legitimate, and what changes if that assumption is unsettled.
Knowledge Beyond Testimony
Modern research, higher education, government and professional organisations privilege credentials, technical language and professional distance. These signals shape what counts as evidence and who is seen as credible within institutions. Within this frame, lived experience is treated as testimony rather than analysis – emotionally powerful, but not equal in authority. We both draw on lived experience in our teaching and research, and in our own lives – one of us through experiences of mental and physical health challenges, the other through living with chronic pain and other health conditions. We draw on lived experience in ways that are sometimes explicit. As co-guest editors, we compiled evidence on the benefits and challenges of integrating lived experience into higher education teaching. We also both draw on lived experience in ways that are not explicit. It can shape how we interpret evidence, approach our work and understand institutions. Even in our contexts, lived experience requires judgement: what can be said, where and how.
The Risk of Extraction
Institutions tend to welcome lived experience most when it is contained, coherent, inspirational and not controversial. It is powerful in teaching, where it connects abstract ideas to lived reality. But this type of use creates a risk: lived experience is valued only for its emotional effect, not its critical insight. Recognition can then slip into extraction. People are invited to share painful experiences yet have limited influence over how they are used or interpreted. The Health and Disability Commissioner report shows both the value and limits of current approaches. Listening matters. But so does what institutions do with what they hear. The question is not whether lived experience should be included, but whether it will be recognised as knowledge in its own right. This could mean involving people with lived experience as co-investigators in research, recognising lived experience expertise in university hiring and promotion, embedding shared decision making in policy development, and paying lived experience contributors as experts rather than participants.
