RHP (Before you start) v2

Consumers and carers usually don’t have access to the same resources as researchers.

Consumers and carers being and staying part of the team involves:

• Being honest about what’s already been decided and what can be done together

• Creating meaningful and funded roles.

• Recognition and remuneration for their time in and outside of meetings

• Time to build relationships and meet regularly as a team

• Flexibility with meeting and other activity times

• Access to peer and community support as well as learning about research.

What else should we add here? Tell us.

• Are we willing to hear different perspectives and change our priorities, approach and processes?

• How much time and budget do we have/can we access for meaningfully involving consumers in the research team?

• What assumptions are we making about consumers and their roles, skills and interests?

• Are we the right people to be leading this work? Should it happen now?
  For example, xxx

• What else is happening for consumers, carers and communities right now?

• Are we showing up to a community who have been harmed or let-down by research?

• What else?

We know consumers, carers and communities want to spend their time on research that makes a difference, respects them and sees them as a whole person (not only an illness or single identity).

Here are some questions that consumers, carers and communities might want to ask:

About purpose

• Why do the research team want to involve consumers, carers and communities?

• Why is this research needed? Could this research my community? Could it harm us?

• What decisions have already been made? For example, priorities, timeframes, reporting

About roles

• What roles are available for me in the research? For example, being on a committee, being a Chief Investigator, or something else.

• Am I being asked to give advice, be part of the team or something else?

• Are others consumers and carers going to be part of the team? Or, will I be the only one?

About your time

• Can I do that role with what’s going on in my life? What support is available to me?

• What value will I get out of this? Does the payment seem fair?

About support

• What will I need to be part of the team and to do the work?

• Can I ask for support and flexibility (e.g. earlier/later meeting times, longer to-do tasks, have a buddy or something else)

• Will my knowledge, identity and strengths valued be understood and respected?

Make a decision

• What questions do I want to ask about this? Can I ask them? And, once I have, am I comfortable with the answers?

Funders play an important role in creating the conditions for researchers and consumers to work together. And making sure there are resources and accountability for co-planning, co-designing and co-producing research.

Here are some questions for funders:

• How will our rules and requirements impact researchers, consumers and carers’ ability to work together from start to finish?

• How can we make it easier for consumers to be part of research teams?

• How will the people we fund be supported and accountable for involving consumers, carers and communities in respectful, inclusive and meaningful ways?

• What is our understanding of co-planning, co-designing and co-producing research?

• Is there space in our definition for community-specific design practices e.g. how Aboriginal communities want to work. How are we resourcing and communicating that?

Be curious etc.