RHP (Key Principles)

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.