Sharing decisions happens from project start to finish when doing ‘co’ research (e.g. co-planning, co-designing, co-producing, co-analysing, co-evaluating or something else).

Co-designing involves co-deciding [5]

Shared decisions may include:

• setting research priorities
• deciding how to address research challenges
• naming the project
• identifying ethical considerations
• choosing when the team will meet
• choosing where and how often the team will meet
• deciding what the findings are
• deciding how the findings are shared
• identifying how the research will be evaluated.

Sometimes research is planned by researchers, people with lived experience and others before funding. Other times, people with lived experience will get involved after the project is funded [8]. Many research projects aren’t co-decided all the way through. So, use clear language to let individuals and groups know if they’re being asked to contribute to something (that someone else will decide on) or be part of deciding.

When making decisions in co-design and co-delivery it helps to:

• Understand decision-making as a process not a single event or meeting. So, that means giving everyone time to think in and outside meetings. Don’t force hurried decisions.
• Ensure there are several people with lived experience so people with lived experience aren’t outnumbered in decision-making. Aim for 50% of the team with lived experience.
• Identify and offer roles for lived experience at every level of the project, including the most senior governance roles (i.e. the board).
• Be honest about when people with lived experience will be involved in decision-making (e.g. before funding or after funding).
• Be honest about what can’t be co-decided and why. And what the constraints are (i.e. regulations and mandated protocols such as ethics).
• Talk about how different kinds of decisions will be made (e.g. day-to-day decisions versus decisions that impact the approach, communities or ethics). Talk about who will make different kinds of decisions (e.g. the Chief Investigator, the team, an advisory group, another group).
• Co-create decision-making criteria and other decision-making tools (e.g. criteria for decision-making, what to do when conventional researchers and lived experience researchers disagree).
• Understand if there are culturally specific decision-making protocols to follow, and, if there are, who can help if you’re not part of the community.
• Ensure everyone has access to the same information, (e.g. using digital systems everyone can access, onboarding new team members, having regular team meetings, sending information in different formats).

Researchers

Avoid making assumptions about what decisions consumers and carers can or want to be involved in. You might ask: Do you want to be involved in this decision? How can we make decisions together?

Knowledge gained by education or in paid work is often valued over knowledge gained through lived experience or through cultural knowledge. This is a power imbalance that sometimes means that some people are listened to more than others and their ideas are taken more seriously.

In co-design and co-production all knowledge systems are valued equally. Sometimes, a form of knowledge that hasn’t been equal might be prioritised to promote equity (for example, prioritising Indigenous knowledges or knowledge gained through lived/living experience).

Professional and academic knowledge is still important, and in co-designing and co-delivering research it should be used alongside other forms of expertise, including lived expertise, cultural expertise and expertise gained through day-to-day practice [12].

Valuing everyone’s knowledge equally early on in co-design and co-delivery of research can involve:

• staying curious
• taking time to understand the knowledge each person brings to the team
• taking time to explore differences of view
  agreeing early on how decisions will be made, especially when people with lived experience and conventional researchers don’t agree
• asking people whose knowledge has been less valued to speak first, before those with professional knowledge
• acknowledging power differences in whose knowledge is valued
• ensuring decisions are made considering lived and academic/professional expertise
• acknowledging that everyone on the team has something to learn and teach
• challenging claims that there is one ‘best’ way
• avoiding assuming others don’t have lived experience because they don’t disclose it
• valuing knowledge from practice outside of academia [12].

When co-delivering and sharing research, valuing everyone’s knowledge might mean:

• making time for skill and knowledge sharing
• ensuring research or professionals don’t have the only or final say (and, if they do, being transparent about why and how the decision was made)
• noticing whose knowledge is valued most and trying to create more equity
• regularly reviewing how successfully diverse knowledges are valued and incorporated into the research approach and outputs.

Relationships are a core ingredient to keep the ‘co’ happening throughout the project. Trust takes time and repair when it’s been broken. Co-design and co-delivery are easier with existing long-term relationships.

Building relationships early in co-design and co-delivery of research can involve:

• exploring what team members and partners want from research and from their involvement in research
• understanding each other’s skills, strengths, values, identities, learning goals, hopes and expectations
• taking time to introduce yourself and your motivation for doing research
• following cultural protocols to get to know each other and create connections
• taking time to be face-to-face (where possible)
• learning about sensitivities (e.g. language to use and not use, histories, struggles, current advocacy) particular to a community or life experience
• learning about, and respecting, life experiences different to yours.

When co-delivering and sharing research, a focus on relationships might involve:

• having one-to-one conversations with team members, partners and participants ahead of meetings and research activities to build connections, understand strengths, access and safety needs and hear things that might not be said in a group
• pre-briefing before and debriefing after research activities such as interviews, workshops or team meetings (not only when something has gone wrong)
• making time for people with lived experience and researchers to connect with each other, outside tightly packed agendas
• keeping in touch during quiet times (such as waiting for funding, a decision or feedback on a publication)
• noticing opportunities to connect people with similar interests
• noticing opportunities for further skill development and new projects that align with people’s interests and skills
• repairing damage to relationships with consent and care
• sharing with each other and broader communities what’s happening, closing the loop.

Because research is usually done within a professional role, financial recognition and other forms of recognition (such as being a named author, access to professional development, access to conferences) are usually already provided to researchers. Consumers and carers usually don’t have access to the same resources and financial recognition, even when they help with research.

If people with lived experience are part of the research team or partners, recognising their time and costs to participate within and outside meetings helps them be and stay involved. We need to avoid exploiting their labour [9]. In co-design and co-delivery, consumers and carers often take on substantial roles and should be represented across all levels of the project including governance.

As NSW Health notes, recognition is financial and non-financial [1]. Non-financial recognition doesn’t replace financial recognition. As Health Consumers Queensland points out: ‘When consumers are not paid, you will only attract consumers who can afford the time and expense of taking part’ [10]. This often leaves out people with caring responsibilities, casual workers who need to take time off work, people on a low income and others.

Recognition might mean:

• getting paid employment
• receiving ad-hoc payment for activities (such as co-facilitating, reviewing documents)
• getting public, group or community recognition (such as media, awards)
• learning new skills or getting education
• being named as co-author
• co-presenting
• getting a character reference for a job or scholarship
• having nourishing food at a meeting or workshop
• something else.

Instead of assuming how someone wants to be recognised, ask them. Not everyone wants public recognition or to use their full name. Check in before making decisions (e.g. about who to name on a publication or who will present at a conference).

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 want to volunteer your time, make sure you don’t pressure other consumers or carers to do the same. Volunteering isn’t accessible for everyone.

Researchers

Do:

• Ask consumers and carers what recognition means to them and offer choices.
• Ensure consumers and carers are not out of pocket working with you (e.g. parking and travel expenses, buying technology, getting childcare).
• Ensure consumers and carers are acknowledged throughout the work including in publications, with their consent.
• Make sure payment processes are accessible, prompt and fair [11].

Don’t:

• Don’t make assumptions about how consumers, carers and others want to be recognised.
• Don’t overlook the time people spend preparing for meetings or reviewing things out of session [1].
• Don’t wait for consumers to ask for recognition before offering it. Power differences can stop people from asking for recognition [1].

Be honest

When planning and starting research, being honest can mean:

• naming the work honestly [13] (While some projects will involve co-design and co-delivery, other projects might be limited to community consultation or involve a mix of activities with different levels of involvement. Don’t promise co-design if you’re not involving people with lived experience in your team and in your decision-making. As Emma Blomkamp notes – there are many shades of co-design [14].)
• 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, the grant rules, timelines that must be followed)
• acknowledging power imbalances (such as whose knowledge is seen as most legitimate, differences in identity, uneven access to resources, differences in job security)
• being clear about the time required and the potential benefits, risks and emotional impacts of the work
• being honest about what support can and can’t be provided
• being honest about set priorities and potential/real barriers in the broader medical research/health/other systems
• being honest about remuneration rates and processes.

By honesty, we don’t mean forcing people to disclose their lived experience. We know there are many reasons someone doesn’t disclose their lived experience, including safety risks.

When co-delivering research, honesty can mean:

• sharing honest feedback with each other about what is and isn’t working
• acknowledging our limitations, what we don’t know or can’t do
• sharing issues and delays, including reasons why the work has stalled
• being honest where there hasn’t been sufficient diversity of participation, or priority groups have not been heard in the research
• holding each other accountable for unhelpful or harmful ways of working
• sharing what did and didn’t work to support the next research project
• being honest about the challenges created by co-design and co-delivery.

Be flexible

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 community can take part
• slowing down or changing plans to increase community involvement (such as changing a venue that isn’t safe or comfortable for community, or providing space for community events/protocols such as mourning or celebration).
• changing processes so that people with lived experience can become part of the team and access the same information as the rest of the team
• making sure there’s more than one person with lived experience in the team, to make space for others to step back when they need to, including for health reasons, cultural reasons or due to the emotional impact of the research
• asking about access needs ahead of workshops and meetings
• offering extra help with tasks that may be inaccessible for consumers and carers (such as using grant systems on a mobile device)
• giving options for people to take part and contribute outside of meetings
• 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 individuals needs and situations (e.g. some people with lived experience may not be able to receive payment but do want to access education).

After the research is done, being flexible can mean:

• working with people with lived experience to make presenting accessible – for example, by pre-recording their presentation
• exploring ongoing roles, such as in co-evaluation, campaigning or implementing the findings
• using partial names or pseudonyms for team members who don’t want to be identified but who still want recognition.

[1] New South Wales Government, Ministry of Health. (2023). All of Us: Six ways of working. Retrieved from https://www.health.nsw.gov.au/patients/experience/all-of-us/Pages/six-ways-of-working.aspx

[2] NSW Agency for Clinical Innovation. (n.d.). Co-design Toolkit. Retrieved from https://aci.health.nsw.gov.au/projects/co-design

[3] Bellingham, B., Elder, E., Foxlewin, B., Gale, N., Rose, G., Sam, K., Thorburn, K., River, J. (2023). ‘Co-design Kickstarter’, Community Mental Health Drug and Alcohol Research Network, Sydney.

[4] Medical Research Future Fund. (2023). Principles for Consumer Involvement in Research Funded by the Medical Research Future Fund.

[5] McKercher, K.A. (2020). Beyond Sticky Notes. Doing co-design for Real: Mindsets, Methods, and Movements, 1st edn.

[6] International Association of Public Participation [IAP2]. (2007). IAP2 Spectrum of Public Participation.

[7] Western Australian Health Translation Network. (2021). Involving Consumers in Health and Medical Research: A practical handbook for organisations, researchers, consumers and funders. Retrieved from https://wahtn.org/wp-content/uploads/2021/09/WAHTN-CCI-Handbook_29092021.pdf

[8] Lamb, K., Dembele, L., Nina, F., Hegarty, K. (2023). An Australian Framework for the Ethical Co-production of Research and Evaluation with Victim Survivors of Domestic, Family, and Sexual Violence. University of Melbourne: Australia.

[9] Jacob, E., Boucher, S. E., FitzPatrick, B., & Hainsworth, K. R. (2023). Challenges in Co-designing Digital Interventions: Learnings from a randomized controlled trial for young adults with Type 1 Diabetes. Journal of Pediatric Nursing, 65, e138-e144. https://doi.org/10.1016/j.pedn.2022.11.002

[10] Health Consumers Queensland. (n.d.). Recruiting: Paying consumers.

[11] Consumer Leaders in Health Collective. (2022). Statement of Aims.

[12] Centre for Community Child Health. (2019, May 6). Theme 4: Evidence for Innovation. [Blog post]. Retrieved from https://blogs.rch.org.au/ccch/2019/05/06/theme-4-evidence-for-innovation/

[13] Beyond Sticky Notes. (2023). Model of Care for Co-design Expansion Pack.

[14] Blomkamp, E. (2024). Shades of Co-Design. Retrieved from https://emmablomkamp.com/blog/shades-of-co-design