What's Important to Us in Health Research? Establishing National Health Research Priorities Through a Co-Design Process
For a long time, research about disability has been controlled by people who don't have disabilities. This means researchers often overlook what is important to the people the research is focused on.
What we wanted to find out
This report, from researchers at the Centre, is about following a co-design process to find out what health issues matter most to people with intellectual disability in Australia. We wanted the findings to help guide which health research topics should be prioritised in the future.
We also wanted to show that inclusive and creative research methods can help people express their ideas.
What we did
We wanted people with intellectual disability to lead and shape the project, so we followed a co-design approach to the research. Co-design means people with and without intellectual disability worked together throughout the project.
The project had 2 parts:
- Interviews with 16 researchers with intellectual disability about their experiences and views on health research
- A national art competition where 49 artists with intellectual disability submitted 60 artworks about the question: "What health issues matter most to you?"
The art-based research (ABR) method was chosen because it is inclusive and allows entrants to communicate in different ways using different types of art.
What we found
The ABR method was a good way for people with intellectual disability to tell us about which health issue matters most to them.
Based on themes from both the art competition and interviews, we were able to identify which health research areas should be prioritised based on what matters most to people with intellectual disability.
We found three overarching themes:
- Lived experience, narrative and identity
- Person-centred care, autonomy and self-determination
- We are only just scratching the surface, understanding there is a lot more to know about the unmet needs of people with intellectual disability.
Other themes include:
- Wellbeing
- Communication and health literacy
- Accessible and inclusive health system practices
- Health promotion and medical conditions
- Arts-based research
Prioritising the research areas in order of importance will require further work.
The findings also offer clear guidance for inclusive research approaches.
