RHP (When researching)

This phase can include:

• Finding participants (recruitment)

• Collecting information and results

• Doing co-analysis and co-synthesis

• Learning about each other’s skills and experiences

• Evaluating how it went

• Going back to check findings with participants

• 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 learn from each other.

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

• Thinking about how to run meetings and workshops with care and hospitality in a way that enables the participation of everyone involved.

• 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 research, not only be taught.

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

• Have clear 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 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 that’s honest about people’s needs and honours 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 skills 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, 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.*