RHP_before you start

Our design process identified five key principles that build on NSW Health’s All of Us Guide to work as a team to co-design and co-deliver research:

• Share decisions

• Value everyone’s knowledge equally

• Build relationships

• Recognise consumers and carers for their contributions

• Be honest and flexible

You might think and talk about: 


• What do the principles mean to me? To us?

• What am I/we doing well already?

• What do the principles mean to the people and broader communities we’re working with? What would they add?

• How might we use the principles at the start? Throughout?

• How will we be accountable to using the principles?

• What do I/we need to learn? Un-learn?

We all make assumptions about each other, what to do and how we’ll do it. It helps to recognise our assumptions and challenge them.

Here are some questions to help to move closer to co-design. You don’t have to answer all the questions.

• What is our understanding of co-design and co-delivery in research?

  Is the research suited to co-design and co-delivery with consumers and carers?

• Am I/we open to different perspectives and changing how we work?
  E.g., our approach, priorities, meetings, processes

• How will we involve consumers and carers in priority setting and planning?

• What time and budget do we have to involve consumers and carers?
  What rules from our institution and/or the grant exist? Are there limits on how we can recognise consumer ’ and carers’ time and co-authorship?

• What discussions have we had about each other’s roles, skills and interests? Consumers and carers included.

• Am I/we seeing consumers and carers as participants, colleagues, partners, or something else?

• How will I/we manage this work around other commitments, such as teaching or clinical work?

• What’s worked before? What didn’t work?

• Am I/we the right people to be leading this work? Who can help us?

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

• What do consumers and carers need to be part of the team? What do they say?

• Is this a community previously harmed or let down by research? Will knowing that change our approach?

Here are some questions for consumers, carers and communities to decide:

• whether to take part

• how to take part

• what support to ask for

You don't have to answer all the questions.

About the purpose of the research

• Why do researchers want to involve people with lived experience?

• Is the research needed? Could research benefit me/us? Could it harm me/us?

• What ‘s my understanding of co-design and co-delivery in research?

• What decisions have been made? E.g. on priorities, timeframes, reporting, roles in the research team or something else

About your role

• Am I ready to use my lived experience in research?

• 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 other consumers and carers part of the team? Will I be the only one?

About your time

• What roles can I do with what’s going on in my life?

• What will I/we get out of doing this?

• Does the recognition seem fair? How does it compare to how other people on the team are recognised?

About the support available

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

• What support is available? E.g. technology and tech support, peer support, training, mentoring, supervision

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

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

Make decisions about your involvement

• What questions do I want to ask about this? Am I comfortable with the answers?

Funders and organisations have an important role in creating the conditions for researchers, health workers and consumers to work together, for example, by making sure there are resources and accountability for co-planning, co-designing and co-producing research. 



Here are some questions for funders and organisation leaders: 


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


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


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

• How have we communicated that? 


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


• How are we investing in the skills and leadership development of consumer and carer researchers? Also often called ‘lived experience researchers’

• Are we making space for community- or culturally-specific projects and design practices, i.e. for Aboriginal ways of knowing, being and doing?

• How will we carry the values of co-design into project monitoring and evaluation? E.g. through using co-evaluation, by hearing directly from the communities involved

Here are some structures and mindsets that consumers, carers and researchers told us enable consumers and carers to be and stay part of the research team:

• Plan and budget for meaningful roles, co-authorship and remuneration for consumers and carers from the start. 


• Take time to build relationships and meet regularly as a team – schedule these meetings in early and stick to them. 


• Understand that consumers and carers usually don’t have access to the same resources as researchers. Consider what resources you have that you can share. 


• Ensure there’s a diversity of experiences and identities represented in your research team, consumers and carers included. Focus on intersectionality (what’s this?) 


• Make peer support available for everyone involved. And support to learn about planning, doing and sharing research.


• Be willing to change processes and ways of working. Flexibility is important


• Make sure lived experience/expertise is valued equally to clinical and academic experience/expertise.