Turning lived experience into impact: How Perry Cunningham is helping shape the future of health research

Curtin CREST program participant, Perry Cunningham.

Born with spina bifida, Perry Cunningham has spent his life navigating a health system designed largely by people who have never lived with disability themselves.

Today, he is helping change that.

Through Curtin’s Consumer-led Research Education and Support Training Program (Curtin CREST), Perry is using his lived experience to help researchers design better health projects – ensuring the voices of people with disability are not just heard, but embedded in the research that aims to support them.

The Curtin CREST program equips consumers and community members with the skills to partner with researchers and co-design health research projects, bringing lived experience into spaces traditionally dominated by academics and clinicians.

For Perry, discovering the program felt like a moment of clarity.

“I looked at the email and realised this was exactly what I needed,” he said.

“I was attracted to the flexibility of the course and how it combined scientific knowledge with lived experience. I instantly knew I was capable.”

Living with spina bifida means Perry has faced challenges many researchers will never personally experience. A brain shunt required to manage his condition has also caused some frontal lobe damage, making certain reading, writing and communication tasks more difficult.

But rather than allowing those challenges to define him, Perry has turned them into a powerful perspective.

“Many people think that to become a scientist you need a maths background or you need to be extremely academic,” he said.

“But you don’t need to be a doctor or a lawyer to contribute to research. There are so many pathways, and this course really does open doors.”

Funded by the Western Australian Government, Curtin CREST was developed by Curtin Involve and Curtin’s Consumer Research Lab in collaboration with the Department of Health’s Office of Medical Research and Innovation.

The program aims to educate and upskill consumers in the principles of research, empowering them to work alongside academics and stakeholders to co-design and lead health research that reflects real community needs.

Director of the Curtin enAble Institute, Professor Bronwyn Myers, says programs like CREST are transforming the way health research is conducted.

Director of the Curtin enAble Institute, Professor Bronwyn Myers.

“People’s lived experience contains incredibly valuable insights,” Professor Myers said.

“Sometimes individuals may lack confidence or feel they don’t belong in research spaces. This course helps people build the skills and confidence to speak the language of research, while also helping academics learn how to better engage with people who have lived experience.”

During the program, Perry faced a major personal challenge when a serious health scare required urgent surgery.

With the support and flexibility of the Curtin CREST team, he was able to pause his placement and continue once he recovered.

“This health scare completely depleted me,” Perry said.

“But the kindness and care from the staff motivated me to keep going and to reach for the stars.”

Today, Perry works as a lived-experience consumer researcher at Curtin, helping academics design research that is more inclusive, practical and grounded in real life.

“This role is incredibly rewarding,” he said.

“I can bring my real-life experience into the work and apply that to research that can positively impact other people.”

His story reflects a growing movement in health research – one where those who live with disability or chronic illness are no longer simply participants in research, but partners and leaders shaping the work itself.

For Perry, that shift has the power to transform not only research, but lives.

“Even if you have a high-level chronic illness or disability but want to advocate or contribute to research, just give it a go,” he said.

“The staff will support you with whatever you need.”

About Curtin CREST

The Curtin Consumer-led Research Education and Support Training (CREST) program is a free, fully online course funded by the Western Australian State Government. The program equips community members with the skills to partner with researchers and co-design health projects that benefit the wider community.

The CREST program is fully online and self-paced.

Register your interest for the next 2026 intake by emailing involve@curtin.edu.au.