v1 RHP (Deciding what to do research on) (Copy)

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 other 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 participants [1]

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

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

• Trust consumers, carers and communities 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 consumers can or can’t play. You might find that your assumptions are wrong.

• Be honest if you’re the right person to lead 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 and how decisions will be made.

• Build relationships and get to know each other's skills and strengths.

• Learn what research has been done before, how it is or isn’t being used (and why)

• Take the time to decide on research priorities or focus areas 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

• Hear an acknowledgement of harms and let downs of past research

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 making time for people to think 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 just a few consumers or community members on a group of mostly researchers and healthcare professionals. Instead, aim for at least 50% of consumers and carers on the research team.

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

❌ 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 and know that consumers bring skills 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 in a chat or induction.