Lived experiences matter in mental health research

Close up of wattle flowers
5 September 2023

Mental health research should not be conducted in isolated Ivory Towers – it needs to be inclusive and relevant to people with mental health conditions, also known as consumers, and the people who care for them. This philosophy of elevating and valuing these lived experiences is core to ACACIA: The ACT Consumer and Carer Mental Health Research Unit, also known simply as ACACIA.

The ACACIA research group is made up entirely of people with lived experience, and was created to investigate issues that are important to mental health consumers and carers in the ACT. The group also works with service providers and policy makers to drive change that improves mental health care. This very successful model of translational research is celebrating ten years in operation in 2023.

“People with lived experience, such as myself, are the ultimate beneficiaries of this research. We have a unique insight into what is needed from research, translation, the service sector, and from the system,” says project lead, Associate Professor Michelle Banfield.

Over the past decade their research agenda has addressed questions established by the lived experience community, such as the need and establishment of non-clinical spaces for people in emotional distress or suicidal crisis, and the implementation of peer workforce roles across ACT and NSW. A current project includes investigating how the use of language is strongly tied to mental health stigma.

“Another good example of our work on lived experience priorities is helping set the research agenda in medication research,” says Banfield.

“It's not that people don't want medications necessarily, but they do want to understand the best medication for their circumstances, gender specific effects, or long-term effects of being on medication.”

“And it's largely ignored, because the clinical community wants to sweep these kinds of things under the carpet. So we help elevate these concerns and make sure they are heard in the medical research environment.”

Their projects also challenge established research pathways. Banfield maintains that some of the assumptions built into existing processes don’t adequately consider people with lived experience.

“The way we frame research can end up excluding quite a large proportion of people from contributing to it. For example, randomised controlled trials can be problematic with regard to inclusivity as they need to be designed for precise measurement, and tend to be better for treatments that are easy to measure. So we end up with a strong evidence base for the tiny proportion of people that works for, but there are a whole lot of people that it doesn’t.”

“On the other hand, our research tends to be observational, and focus on people’s experiences. It usually uses qualitative methods as that’s how people with lived experience tell us they want to participate.”

A principal feature of the work undertaken by the ACACIA team is embedding engagement with its advisory group, peak bodies, and mental health consumers and carers, from the start of every project. Importantly, this engagement also includes policy makers and service providers to aid in the translation of evidence into action.

“Our research is done in partnership with as many of the stakeholders as we can. We deliberately connect with policy, and our projects are always designed to influence the system as we go,” says Banfield.

“We connect with the ministers, public servants, and health professionals right the way through our projects, because if you wait until the end it’s too late. And this connection also aids in elevating our lived experience voices by bringing them directly to these tables.”

This connection with lived experience, and translation from research to practice makes the ACACIA initiative highly successful. Banfield and her team are excited to be celebrating ten years of research and service to the mental health consumer and carer community.

“We are challenging the system of mental health research, and we've managed to keep doing it for 10 years,” says Banfield.

“We’ve not taken the time before to look back and really acknowledge, appreciate, and celebrate all the work we have done.”



Please help Banfield and ACACIA team celebrate this ongoing achievement at the 10 year celebration: ACACIA: The ACT Consumer and Carer Mental Health Research Unit, between 10am – 1pm on Friday 8 September. Find out more.

By Liz Drummond.