This paper reports findings from a critical analysis of the meaningful engagement of people with lived experience of Intracranial Hypertension (IH). It is increasingly recognised that people who live with rare disease, chronic illness and disability should be involved in the research about their conditions and in the decision-making that determines the associated management and treatment practices about their lives. This is a missed opportunity for research in IH, with community and individual expertise often overlooked or engaged in minimal or tokenistic ways, whereby involvement is superficial and lacks meaningful impact (Majid, 2020). 

We contend this is often related to poor definitions of what meaningful engagement might entail, which belies the intention of nothing about us without us in disability research. Of 246 publications about IH between 2000 and 2025, a tiny minority of 14 publications reported on studies that engaged with the people who have the condition being studied, assessed here in line with The International Association of Public Participation Spectrum (IAP2 International Federation, 2018). The IH community has shown in past research that they are keen to work with and embrace research projects in this area, but we find this is rarely and poorly utilised. We note a high level of token, rather than meaningful, involvement in the IH research. 

There is enormous opportunity for a greater level of community and individual engagement in this area of research that encompasses a more diverse range of experience from the community beyond the current focus on those in Western countries who largely speak English. We conclude with a call for an expanded research agenda in this area and note parallels that can be made with broader disability and chronic illness research. More inclusive and genuine approaches to meaningful engagement in IH research are urgently needed, working towards a shared understanding of IH.