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Researchers, consumers, carers and co-design specialists made this resource (learn how).

We include tips and tools to help researchers, consumers, carers and health workers work as a team.

We suggest you start with the key principles before exploring the medical research cycle.

  • People define co-design and other ‘co’ things differently.

    Because there aren’t shared definitions for co-designing, co-producing and co-delivering research, this resource focuses on practical ways to work in partnership. In IAP2 language: collaborate and empower.

    By co-design and co-delivery we mean: 


    We call this list our key principles. Read more on the principles here.

  • We use the following terms from NSW Health’s All of Us Guide and have added several 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.

    Researcher: Someone who is involved in the doing of research. We recognise many kinds of expertise - through education, through lived or living experience, through work or through cultural knowledge. We use ‘conventional researcher’ to describe people historically employed as researchers.

    We recognise consumers and carers are involved in different ways and to various levels of depth. So, we talk about:

    • Team. Consumers or carers who are part of the research team, for example, as Associate or Chief Investigators, Peer or Lived Experience Researchers, Research Assistants or something else.

    • Partners. Consumers or carers who support specific activities, such as on committees, running workshops, but are not part of the core team and do not make 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 come back to help 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.

    Power: Someone’s ability to do something – for example, set an agenda or decide what engagement happens. 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.

    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. Access All of Us tools.

    Health worker to describe anyone working in health and social care more broadly.

  • This resource is for:


    • People working together 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 work better together.

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

  • This resource is for anyone wanting to do research in active partnership between consumers, carers, researchers, health workers and anyone else who needs to be involved.

    The resource includes:

    In 2024 we’ll add tools and templates

    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. 


    • 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.

  • The National Health and Medical Research Council recognise that involving consumers and community members add value to health and medical research and they have a right and responsibility to do so.

    The Australian Code for the Responsible Conduct of Research (2007) the primary guidance for institutions and researchers in responsible research practices, states:

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

    Here are some places to learn about the benefits of involving consumers and carers:

    • Why involve consumers? Australian Clinical Trials Alliance

    • Why is consumer and community involvement important? From the statement on consumer and community involvement in health and medical research by the National Health and Medical Research Council

  • We recognise:

    • 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. Attitudes, assumptions, systems and processes can get in the way. 


    • The culture of research is changing. And it needs to change faster to make it easier to work together. 


    • It’s important to remunerate consumers, carers and communities to help plan research. And we know that finding budget for remuneration before getting funding (read about our seed grants).

    • It’s disappointing to plan research together and 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. And a broader movement to decolonise research.

  • There’s been a lot of work done already on partnering in research.

    Regional Health Partners is located in NSW. So, we build on:

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

    Australian Research bodies:

five key principles to work as a team

Our design process identified five principles that build on NSW Health’s All of Us Guide [1] to help researchers, consumers, carers and health workers co-design and co-deliver research. Research in partnership means seeing and recognising consumers and carers as colleagues and partners, not only as participants [2].

  • Good relationships are core to effective co-design and teamwork.

    Building relationships can involve:

    • using cultural protocols to get to know each other and create connections

    • understanding each other’s skills, identities, learning goals, hopes and expectations

    • taking time to introduce ourselves and our relationship to the research

    • learning about and respecting life experiences different to ours

    • checking in regularly with each other

    • pre-briefing before and debriefing after research activities such as interviews, workshops or team meetings with conflict

    • keeping in touch during quiet times (such as waiting for funding, a decision, a publication)

    • repairing damage to relationships with time, consent and care

    • sharing with each other and broader communities what’s happening, closing the loop

    We don’t mean forcing anyone to disclose their lived or living experience.

  • Traditionally, knowledge gained by education has been valued over knowledge gained through lived and through cultural knowledge. In co-design, co-production and co-evaluation, we value all knowledge systems equally.

    Professional and academic knowledge is important and in co-design it should be used alongside other forms of expertise. Valuing everyone’s knowledge equally could mean:

    • ensuring decisions are made considering lived and academic/professional expertise

    • ensuring academics/ professionals don’t have the only or final say

    • valuing knowledge from practice outside of academia [4]

    • taking time to explore differences of view

    • noticing whose knowledge is valued most and trying to change that

  • Sharing decisions happens from start to finish when doing research together. This may include decisions such as agreeing on research priorities, the way the research will be done, how to address research challenges, naming the project, when the team will meet, where and how often., what the findings are, how the findings are shared and how the research will be reviewed.

    Co-designing involves co-deciding.

    When making decisions, it helps to:

    • Know what decisions have already been made
      such as by the funder, timeframe, budget or activities

    • Talk about how different decisions will be made and who makes them (e.g. the core team, an advisory group).

      Day-to-day decisions, for example, versus decisions that impact the approach, communities, ethics etc.

    • Ensure everyone has access to the same information

    • Give everyone time to think in and outside meetings, don’t force hurried decisions

    • Build decision-making tools together

    • Use simple language when we can

    Researchers

    Be cautious making assumptions about what decisions consumers and carers want to be involved in. You might ask questions like: do you want to be involved in this decision?

  • A lot of research is done within a professional role. Financial recognition and other forms of recognition (such as authorship, access to professional development, conferences etc) are already provided to most conventional researchers.

    If consumers and carers are core team members, partners or study participants, we need to recognise their time, strengths and support needs to ensure they can stay involved and that we're not exploiting their labour [6].

    As NSW Health notes [3], recognition is both financial and non-financial. Non-financial recognition doesn’t replace financial recognition. Recognition might mean:

    • employment

    • ad-hoc payment for activities (such as co-facilitating, reviewing)

    • public, group or community recognition

    • developing new skills (such as facilitation and leadership)

    • presenting or writing things together (co-authoring)

    • getting a character reference for a job or scholarship

    • something else.

    As Health Consumers Queensland point out: 'When consumers are not paid, you will only attract consumers who can afford the time and expense of taking part’ [7]. A lack of payment often leaves out people with caring responsibilities, casual workers who need to take time off work, people on a low income and others.

    Watch consumers, carers and health workers discuss recognition here. 📺

    Consumers and carers

    You have a right to decide what recognition you do and don’t receive. Other consumers and carers have that right, too. If you can volunteer, ensure you’re not pressuring other consumers or carers to do the same. Volunteering isn’t accessible to everyone.

    Researchers

    • Ask consumers and carers about what recognition means to them and offer choices. Don’t make assumptions [3]

    • Ensure consumers and carers are not out of pocket working with you (e.g. parking expenses).

    • Ensure consumers and carers are acknowledged throughout the work including in publications, with their consent.

    • Make sure payment processes are prompt and fair [8].

  • In research, being honest starts with letting everyone know what can and can’t be co-decided and then continuing that honesty into:

    • Sharing constraints (e.g. who can get paid and how, what roles are available to which team members, what kinds of research activities can and can’t happen, grant rules, etc.)

    • Sharing honest feedback with each other about what is and isn’t working

    Many consumers and carers have busy lives and we know researchers and health workers do too. So, being flexible can mean:

    • Having meetings outside of traditional work hours to ensure consumers, carers, health workers and communities can take part

    • Offering information in different formats (e.g. Easy English, visual, summaries, by video or something else)

    • Offering different forms of recognition across the team based on individual needs and situations.

    Watch consumers, carers and staff discuss honesty here. 📺

    Researchers

    Don’t say your work is co-designed or co-delivered if it’s not.

Go to: Before you begin your research

 

Please remember, you’re looking at a draft 📝