RHP (Decide what to research)

This phase can include:

• looking at existing research strengths and gaps

• finding out what matters to individuals, communities and health workers

• holding forums and having one-to-one conversations

• exploring and setting priorities (what matters most)

• exploring the outcomes consumers, carers, researchers and funders want

• talking about roles

• creating partnerships

• getting letters of support from potential partner organisations

• or, something else

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


• See consumers and carers as colleagues and partners, not only as participants [1]

• Think and act like a team from the start (that includes consumers, carers and health workers).

• Think about how to run meetings and workshops with care and hospitality in a way that enables the participation of everyone involved. Be flexible with meeting times, format and offer choices.

• Don’t call something co-design that isn’t.

• Trust consumers, carers and communities advice and knowledge about what’s needed.

• Build a shared view of strengths, needs and research priorities (this takes more than one meeting).

• Share your assumptions - for example, about what roles you’ll do, roles consumers can or can’t play. You might find that your assumptions are wrong.

• Acknowledge harms and letdowns of past research even if you weren’t involved.

• Think about whether you’re the right person to lead or take part in the project.

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

• Know about how much input we can have

• Know what roles are available to us and what’s expected of us.

• Decide how decisions will be made together

• Have time to build relationships and get to know each other's skills and strengths

• Have warm and friendly interactions with researchers.

• Have choices for when and where to meet as a team

• Take the time to decide on research priorities or focus area together

• Ask us instead of making assumptions about what we can do or need.

• Be honest with ourselves about our own abilities and other commitments

To avoid tokenism:

❌ Don’t give a presentation on what you want to do and ask for consumer or community support in a single meeting. Instead, make time for consumers and carers to be involved in setting priorities and making decisions. This usually involves several sessions and might involve take-home community-friendly material for people to think about outside meetings.

❌ Don’t name the work before you’ve done it. It’s tempting to come up with a name for your work before you’ve started it or ask people for ideas. Instead, use a placeholder name and then think deeply about what fits the project and community once the work is underway.

❌ Don’t have one consumer or community member on a group of mostly conventional researchers and healthcare professionals. Instead, aim for 50% of consumers or carers on the research team.

❌ Don’t ask consumers to speak for their communities. Instead, know that each person can only speak for themselves unless they’ve been endorsed as a spokesperson for their community. Involve a range of people.

❌ Don’t only include outcomes set by funders and research. Instead, ask consumers and carers what outcomes matter to them, too.

❌ Don’t assume consumers and carers can only advise and review things (and can’t play other roles in the team). Instead: talk openly about roles. Acknowledge that consumers bring skills to the team and can learn new skills.

❌ Don’t go straight from first ideas to research proposals without checking what's been done. Consumers and carers often won’t know about what research exists already. Instead, learn together about where research is needed. That might involve sharing existing research with communities that they don’t have access to or know about. And have communities share community-led research and insights with you.

❌ Don’t assume consumers and carers only have lived experience/expertise and don’t have professional or research skills. Instead, ask and be curious. You might ask about other skills consumers and carers bring to the team in a chat or induction.