V1 RHP (About)

A resource for anyone wanting to do research in true and active partnership with others. By others, we mean consumers, carers, researchers, health workers and anyone else who needs to be involved.

It includes:

• Questions to start well

• Tips for each step of the research cycle

• What to do and what to avoid

• Links to other resources

In 2024 we’ll add tools and templates

This resource is for two main groups:


• People working together on research - researchers, consumers, carers, health workers and anyone else involved.

• People funding research. To help them understand what to support and encourage. And what to look for when evaluating proposals and research outputs.

We aim to improve collaboration between researchers, consumers, carers, health workers and others by:

• Helping you to ask the right questions before you start and throughout

• Making sure consumers and carers have access to the same information as researchers and health workers

• Understanding what is needed across the research cycle

• Giving practical tools and suggestions 


While we didn’t create this resource for broader health improvement and redesign projects, we think many of the principles and processes can also be applied there.

People define the terms co-design and co-production in different ways.

Because there aren’t shared definitions for research yet, we focus on how we* want to work together. We draw on many different practices to help us do that. These practices include co-design, co-production and co-evaluation, but we aren’t limited to those things.

We focus on: 


• Working as a team

• Sharing decisions

• Valuing everyone’s knowledge equally

• Focusing on relationships

• Recognising consumers and carers for their contributions

• Being honest and flexible

Read more about our principles below


*By we, we mean Regional Health Partners, researchers, consumers, carers, health workers, communities and other partners.

• Not all research can be co-designed or co-produced. And even when research is co-designed and co-produced, there will be people who are more and less involved. 


• Working as a team (researchers, health workers, consumers and carers) isn't easy. Sometimes attitudes, assumptions and processes get in the way. 


• The culture of research is changing. And it needs to keep changing to make it easier for researchers, consumers, carers and health workers to work together. 


• It can be hard to remunerate consumers, carers and communities to help plan research without funding (read about our seed grants). 


• It’s disappointing to plan research together and then not get the project funding. 


• Trust and relationship building takes time and needs time. Some individuals and communities have been let down by poor follow-through (e.g., no one came back to them). Or experienced harm or stigma from research.

• There are community and culturally-specific ways of doing research that must be honoured and a broader movement to decolonise research.

This resource isn’t about consulting or informing consumers and carers (see our levels of involvement diagram).


We don’t give information on:

• How to engage specific groups or individuals – for example, Aboriginal or Torres Strait Islander communities, within justice health, LGBTQIA+ health, research with young people, children or other communities. We support research with specific communities being led by people from the cultural group or identity. 


• Why consumers or carers should be part of research from start to finish. This information is already available


• The many different kinds of research (e.g., participatory action research, or detailed information on specific research tasks or processes (e.g. statistical analysis).

• How to engage patients in their own care.

This resource isn’t frozen in time. Each time you return to this resource, you might find something we’ve changed as we learn.

Start where you are.

If you’re part way through a project and you haven’t involved consumers and carers, can you start? If you start late know there might be frustration and plan to take time telling the story of how you got to where you are.

We made one resource for researchers, consumers, carers and health workers. We did this to make sure everyone has access to the same information. You’ll find shared and separate sections throughout.

We made it easy-ish to read. If consumers and carers don’t equal access, it’s difficult to share power or share decision making. We’ve tried to keep the language clear with minimal jargon. This is to make sure many people can use it and understand it. If you notice places where we could make words or instructions clearer contact us.

We made a website instead of a written document. Written documents go out of date quickly. So, we’ve created a web resource instead. If you’d like a printed version, xxx

There has been lots of work done already on partnering in research.

We use the National Health and Medical Research Council (NHMRC) research cycle and build on:

• NSW’s Health’s All of Us Guide and Toolkit

• The Agency for Clinical Innovation’s (ACI) Co-design Toolkit

• Australian Clinical Trials Alliance (ACTA) Consumer Involvement & Engagement Toolkit

• Co-design Kickstarter by the Community Mental Health Drug and Alcohol Research Network

• And many more

We align with…

The Australian Health systems’:

• National Safety and Quality Health Service (NSQHS) Standards for Partnering with consumers in organisational design and governance.

• National Clinical Trials Governance Framework Component 5: Partnering with consumers.


Australian Research bodies:

• National Health and Medical Research Council (NHMRC) Statement on Consumer and Community Involvement in Health and Medical Research 2016.

• The Principles for consumer Involvement in research funded by the Medical Research Future Fund.

We match our language to NSW Health’s All of Us Guide [link]

We explain our Core Principles below