Grounded in the everyday experiences of living with Intracranial Hypertension (IH) and focused on addressing everyday harm and increasing safety, wellbeing, and community participation, this project aims to identify and rank research and support priorities for IH in Australia.

Funded through the National Disability Research Partnership (NDRP) and delivered in partnership with IH Australia, 'Nothing Without Us' will run from September 2026 to September 2027. The project is led by a collective of people with experiential expertise of IH in Australia.

Project Overview

People with IH live with a fluctuating, energy-limiting chronic illness-disability in environments that are often poorly equipped to support them. The safety risks people with IH face are systemic, spanning healthcare and disability support. This 'everyday harm' (Robinson, et al., 2026) accumulates in the day-to-day experience of living with IH :

• Over 80% of people with IH report doctors lack adequate knowledge (Moes, 2025; Witry, et al., 2021):

"if anything, their lack of knowledge causes more harm"

• More than 90% lack coordinated multidisciplinary care (Hasirici, et al., 2021; Jensen, et al., 2021), and where clinical guidelines exist, compliance remains consistently poor across care settings (MacKeith, et al., 2026).
  
• Disability support eligibility frameworks (including NDIS and DSP) disadvantage people with fluctuating conditions where disability and healthcare needs are relationally entwined (Moes, 2025; Thomas, 2007; 2012).
  
• Without clear care pathways, pwIH frequently have nowhere else to turn, resulting in high rates of emergency department presentations where treatment remains largely symptomatic and poorly evidenced (Hunt & Olivieri, 2023).
  
• Psychiatric symptoms may affect up to 86% of people with IH (de Oliveria, et al., 2021; Puustinen, et al., 2019), and people with IH face significantly elevated risks of death from suicide and accidental overdose (Hermes, et al., 2020).
  Self-managing without adequate resources further impacts mental health and quality of life.

People with IH in Australia have been largely excluded from the research, support and management decisions that directly affect them. This epistemic injustice is sustained by the persistent absence of research reflecting the social, environmental, and lived dimensions of IH. Where engagement of the IH experience has occurred, it has been limited and largely tokenistic (Moes & Kent, 2025). People with IH have called for this to change:

"We need a balance between clinical-based knowledge and people living with a chronic illness knowledge"

This project focuses on what people with IH identify as important, including unmet needs, barriers to support, and the changes that would make the biggest difference to their safety, wellbeing, and participation in community life.
 
Grounded in a critical disability studies framework and drawing on Kafer's political/relational model and Thomas's socio-relational model, this research understands IH as a chronic illness-disability shaped by the embodied experience and the social, structural, and systemic barriers that compound it.

The project will adapt the James Lind Alliance Priority Setting Partnership model, reoriented around safety, disability rights, and first-person perspectives.

Disability Leadership

A co-researcher collective of people with lived experience of IH will drive every phase of the research, including research design, data collection and analysis, and the way findings are shared and used. 

The collective will draw members from across Australia, including rural, regional, and metropolitan areas, and the research will gather perspectives from the broader IH community, ensuring the final priority list reflects the concerns and priorities of people with IH nationwide.

Beyond the research, this project aims to build research capacity and social capital within the IH community, positioning people with IH to lead and advocate for future change. 

Project Outcomes

The project will deliver Australia's first community-owned IH research priority list, a plain-English community report mapping barriers to safety, wellbeing, and community participation, and a peer-reviewed article documenting the priority-setting process and findings. 

The priority list is designed to move from evidence to action, providing a foundation for further community-led research into practical tools and resources to support people with IH to navigate healthcare, disability support and daily life. Co-researchers will be positioned to lead that work from the outset.