v1 RHP (When researching) (Copy)

This phase can include:

• Finding participants (recruitment)

• Collecting information and results

• Learning about each other’s skills and experiences

• Doing co-analysis and co-synthesis

• Evaluating how it went

• Working through problems

• Or, something else

Here’s what researchers told us and what we learned from other resources: 


• Buddy up experienced researchers with consumers and carers to support them, and have researchers also learn, too.

• Invest in research capability building for consumers and carers and your own learning about the lived and living experiences you’re studying.

• Adapt ways of working and methods to be more accessible, for example, displaying data in a simpler way for interpretation

• Schedule ongoing updates on the results and project progress with the team and anyone else involved in the research

• Have a structured project plan with room for flexibility

• Work with consumers and carers to help interpret and troubleshoot unexpected results

• Name the work together once you’re doing it, and use creative prompts such as mood boards, cards and name generators.

• Look for opportunities for consumers to teach and present, not only be taught.

Here’s what consumers and carers told us and we learned from other resources

• Have clear on expectations and know our limitations e.g. what we can and can’t do, need help with

• Have flexibility in dealing with health difficulties, caring responsibilities, cultural business and other things

• Have choices of different roles – some that involve a lot of work and some that don’t, with different levels of involvement

• Be asked for feedback and suggestions for improvements as we go, not waiting for a final evaluation to share our experiences of being part of the team.

• Get regular communication and updates about the project

• Have access to peer support from other consumers and carers doing research.

• Get opportunities for learning, presenting and teaching.

❌ Don’t only consider consumers or consumers for administrative tasks or roles. Instead, consider opportunities at all levels of the project team, including, where possible, opportunities to develop leadership skills.

❌ Don’t re-write language about people’s identities and experiences that you aren’t a part of. Instead, agree on language will be honest about people’s needs and honour their strengths. Ensure words about people and their bodies are suggested by them, not people from outside a group.

❌ Don’t only show consumers and carers the results and ask for feedback. Instead, build capacity in your team by providing training for consumers to collect/analyse data.

❌ Don’t hide things from consumers and carers. Instead, schedule regular check-ins/progress updates and book these well in advance. Be honest when there’s been a change, such as a loss of funding or support. Make time to process frustrations.

❌ Don’t assume everyone knows the words you're using. Instead, explain technical terms in Plain English, take time to check if everyone understands, explain acronyms and provide key terms where appropriate.

❌ Don’t disregard organisational policies and limitations. Instead, recognise the systems are not perfect. Be transparent with the team and find creative ways to work within and across systems.

❌ Don’t ignore lived experience/expertise. Instead, work with people’s strengths and explore how technical expertise and lived expertise can be best combined. That isn’t always easy. Stay with the trouble.*