In a study that could change how psychosis medication is prescribed, the lived experience community and clinicians are being involved early, thanks to AEPCC facilitation.
Professor Kelly Allott, who is leading the study, explained the vital role of early consultation.
“Involvement of key stakeholders from the outset optimises the chances of funding and study success. Prior to receiving a grant it can be challenging to facilitate this consultation, but AEPCC is making it possible.”
Lived experience consultation via social media
AEPCC used its Psychosis Understood Instagram account to consult with the lived experience community.
“The insight from this consultation was that we needed to add supported decision-making to our decision-making model,” Professor Allott said.
“As a result, we are developing a world-first hybrid decision-making model that includes shared and supported decision-making principles.”
“This means that when it comes to prescribing medication, the person receiving care has the right to choose, and their preferences should take priority, even if that involves risk. The healthcare practitioner must provide information about the options, the pros and cons of each option, and the likelihood of these outcomes happening to their client. The person receiving care should receive information in ways they can understand and be supported to make and be involved in decisions.”
Advisory group develops outcome measures and a decision-making model
AEPCC turned to social media again to recruit lived experience members for an advisory group. Thirty applications were received from across Australia. The advisory group was established in September 2024 and is made up of four clinicians, four caregivers of a young person with psychosis, and seven young people (aged 18-29) with lived experience of psychosis.
Professor Allott explains:
“The advisory group is informing the study design, including co-developing the study’s primary outcome measure. Quality of life has been incorporated into this measure, which would have been missed if we had not involved the lived experience community early.”
“The group is also co-developing the hybrid shared and supported decision-making model that will be used in the trial.”
Clinician survey informs training package
To broaden consultation, clinicians have also been surveyed about their training needs for shared and supported decision-making. The results are informing a training package for clinical sites delivering the hybrid decision-making model as part of the trial.
What’s next?
Choices aims to apply for funding in the first half of 2025 to pilot the acceptability and feasibility of the new decision-making model and outcome measure in clinical sites across Australia.
Why is AEPCC facilitating this study?
AEPCC chose to facilitate the Choices study because it was developed under the psychosis sector research priority: ‘What treatments deliver the best long-term outcomes for people with early psychosis?’ AEPCC established this priority following extensive consultation with the sector.
If you would like to get in touch with the principal investigator, Professor Kelly Allott, please email [email protected].
