People define co-design and co-delivery differently [1,2].

Because there isn’t one way to co-design and co-deliver research, this resource focuses on practical ways to work in partnership no matter what ‘co’ activity you use (e.g. co-plan, co- design, co-produce, co-analyse, co evaluate or something else). By co-design and co delivery, we mean researchers, consumers, carers and others:

• Working as a team
• Sharing decisions
• Valuing everyone’s knowledge equally
• Building relationships
• Recognising consumers and carers for their contributions
• Being honest and flexible

We identified these practices from many existing frameworks [2,3,4,6,7] and through conversations with consumers, researchers and co-design specialists. We call the list above our key principles. Read more about each principle.

A note on the key principles. We acknowledge many knowledge and value systems, especially those of Aboriginal and Torres Strait Islander peoples. We recommend the key principles as a guide for research co-design and co-delivery, not as a rigid set of rules or as a replacement for communities’ own language, world views, values or protocols.

Co-design and co-delivery involve consumers and carers in decision-making and belong to the ‘collaborate and empower’ levels within IAP2 [5]. 

We use terms from NSW Health’s All of Us Guide [6] and several terms of our own.

Consumer: People who use, have used, or are potential users of health services. Some consumers have formal roles (such as Consumer Representatives) – others don’t want to. All perspectives are valuable. No one can represent all consumers.

Carer: A person who provides care and support to a family member, friend or as part of a kinship system. Consumers and carers are different people with different perspectives.

Consumers and carers can be involved in different ways [2,5,8]. So, we talk about:

• Team. Consumers or carers who are part of the research team – for example, as Associate or Chief Investigators, co-investigators or Lived Experience Researchers, Research Assistants, or something else.
• Partners. Consumers or carers who support specific activities, such as committee members, but who are usually not part of the core team making decisions throughout the research.
• Participants. Consumers or carers who are part of the study or studies but generally don’t make decisions. Some participants may help to review and refine draft findings.

Lived or living experience: The knowledge you get when you have lived or are living through something. For example, a person with lived experience of mental illness brings their understanding and knowledge from their direct experience.

Researcher: Someone who does research. We recognise many kinds of expertise – through education, through lived or living experience, through work experience or through cultural knowledge. We use ‘conventional researcher’ to describe people who are not employed as lived experience/peer researchers [2].

Health worker: Describes anyone working in health and social care more broadly.

Power: Someone’s ability to do something – for example, set an agenda or decide what activities happen. Power is getting to decide who gets listened to.

Safety: Safety can be physical, emotional, legal and cultural. No one should be harmed by their experience of engagement.

Funders: Formal and/or legal entities that support health and medical research though funding, grants, sponsorship, donations and investments [7].

Tool: A tool helps you do something – for example, have a conversation, create a safety plan or plan a project with consumers, carers and communities. (Find tools throughout the section ‘work together from start to end’.)

Our design process identified five principles that build on NSW Health’s All of Us Guide [1] and other resources [3,4,5,6,7,8] to help researchers, consumers, carers and health workers co-design and co-deliver research. Read more on each principle here.

• Share decisions
• Value everyone’s knowledge equally
• Build relationships
• Recognise consumers and carers for their contributions
  Be honest and flexible

A note on the key principles. We acknowledge many knowledge and value systems, especially those of Aboriginal and Torres Strait Islander peoples. We recommend the key principles as a guide for research co-design and co-delivery, not as a rigid set of rules or as a replacement for communities’ own language, world views, values or protocols.

This resource is for:


• people working in a team on health and medical research – researchers, consumers, carers, health workers and anyone else involved
• anyone curious about how researchers, consumers, carers and others can co-design and co-deliver research
• people managing and/or funding health and medical research to understand:
  • what to support and encourage
  • what to look for when evaluating proposals, processes and research outputs.

This resource is for anyone doing research in active partnership (from start to end) with consumers, carers, researchers, health workers and anyone else who needs to be involved. This resource includes:

• questions to ask before you start research
• tips for each step of the medical research cycle
• what to do and what to avoid in co-designed and co-delivered research
• links to resources, tools and templates.

This resource isn’t about consulting or informing consumers, carers or communities. It is also not designed for, or about being a participant in research.

This resource doesn’t give information on:

• how to engage specific groups or individuals – for example, Aboriginal or Torres Strait Islander communities [9, 10, 11], within justice health, LGBTQIA+ health [12, 13], research with young people, children or other communities. We support calls for research with specific communities to be led by people from that community [9,10,11,12].
• the many types of research (e.g., public health, preventive health, translation, clinical research) or detailed information on specific research methods, tasks or processes (e.g. statistical analysis, co-analysis)
• how to engage patients in their own care
• how to implement research findings into clinical practice.

Individual tools have recommended citations.

You can cite this overall resource as: NSW Regional Health Partners, KA McKercher & Sue Muller (2024) Doing research together.

The National Health and Medical Research Council recognises that involving consumers and community members can add value to health and medical research and that consumers have a right and responsibility to be involved [14].

The Australian Code for the Responsible Conduct of Research [15], the main guide for responsible research practices, states:

“Appropriate consumer involvement in research should be encouraged and facilitated by research institutions and researchers.”

Here are two places to learn about the benefits:

• Why involve consumers? Australian Clinical Trials Alliance
• Why is consumer and community involvement important? National Health and Medical Research Council and Consumers Health Forum of Australia

We recognise:

• Not all research can be co-designed or co-delivered. Even when research is co-designed and co-delivered there will be people who are more and less involved.
• Working as a team (researchers, health workers, consumers and carers) isn’t easy. Attitudes, assumptions, systems and processes can get in the way [2].
• The culture of research is changing. And research culture needs to change faster to make it easier to work together.
• It’s important to remunerate consumers, carers and communities to help plan research before it’s funded [2,3,6].
• Finding budget for remuneration before getting research funded can be hard [2].
• It’s disappointing to plan research together and then not get the project funding.
• Poor experiences with research can stop people and communities from taking part again. Trust and relationships take time to re-build. Some communities have been let down by poor engagement or follow-through (e.g. no one came back to them). And some communities have experienced harm or stigma from research.

A lot of work has been done already. We build on different versions of the National Health and Medical Research Council (NHMRC) research cycle [9,16] and:

NSW’s Health’s All of Us Guide and Toolkit. In particular the six ways of working for respectful engagement

The Community Mental Health Drug and Alcohol Research Network’s Co-design Kickstarter

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

The National Health and Medical Research Council’s Keeping Research on Track II: A guide for Aboriginal and Torres Strait Islander Peoples about Health Research Ethics and AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research

The Australian Health Research Alliance’s handbook on involving consumers in health and medical research

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

And many more.