This phase can involve:

• co-presenting research at conferences and events
• making results summaries (e.g. in words, visuals, other languages)
• making creative outputs (e.g. art, exhibitions, zines, videos)
• creating campaigns for change
• doing public events with community groups
• influencing policy and decision-makers
• partnering with health workers and consumers to apply the findings
• co-authoring scientific papers and reports
• co-authoring policy briefs and recommendations
• checking how you did against the key principles

or something else.

Here’s what we learned from researchers and from existing resources [1,2,3,4,5].

• Decide as a team who you’re trying to reach (your audience or audiences) and how to engage them best (e.g. writing, events, something else).
• Notice how the findings feel to people with lived experience. Be sensitive about deficit-based and stigmatising language. Find and use strengths-based and trauma-informed language [4].
• Check in regularly with the team to make sure everyone feels comfortable with the decisions being made.
• Talk about how each person wants to be named (or not) in publications, other reports and on social media. Not everyone wants a public profile.
• Consider non-traditional dissemination (posters, zines, comics, videos, social media, flyers, podcasts, performances, infographics or something else).
• Consider working with artists from the communities you’re working with to explain the research process and/or the findings.
• Take time to explain the publication(s) to the team in plain English.
• Create and share pre-publication drafts with the whole team.
• Be flexible with different ways to give feedback (e.g. voice note, email, call, track changes).
• Consider how to continue ‘co’ into evaluation and implementation.
• Celebrate wins with the whole research team and others who have been involved. Reflect on growth across the team.

Here’s what consumers and carers told us and what we learned from other resources [1,2,3,4,5,6].

• Be involved in naming the research findings and deciding how to share the findings with different groups (e.g. health workers, policy makers, community members).
• Notice how the findings feel as a person with lived experience.
• Give feedback on language that might stigmatise, harm or embarrass consumers or carers. Have your feedback taken seriously and worked through.
• Communicate how you want to share your feedback on drafts (e.g. in writing, as a voice note, walking through it together, using a platform that everyone can access).
• Get information in different formats (images, video, written, by mail) before meetings (e.g. a week before a meeting, not the day before) to think and prepare.
• Be involved in sharing the results with the participants and with wider communities.
  Know how you’ve helped the work.
• Be involved in evaluating the research (if you want to be).
• Take time to celebrate the work and the team.

words to actions
six practical suggestions to put the key principles into action when doing research [download PDF]

evaluating how it went
questions to evaluate the process from the perspective of the people involved [download PDF]

other tools (not by us)

National Health and Medical Research Council – self-assessment of consumer and community involvement in research [PDF]

Australian Clinical Trials Alliance – writing in plain language [blog]

Australian Clinical Trials Alliance – plain language summary [word template]

There are free tools available to support accessible writing, e.g.
Hemingway Editor, Sydney Health Literacy Lab – Health Literacy Editor

• Don’t stop at a publication. Instead, consider ways to be part of making change and share your research so it has more impact and reaches people who can do something with it e.g. (events, social media, radio or tv).
• Don’t share the outcomes only with a restricted academic audience that communities can’t access. Instead, use Open Access journals and write a companion plain language and Easy English summary with every research publication or report.
• Don’t move on to your next project and forget to celebrate the work. Instead, pause and explore ways to celebrate together. It doesn’t have to be fancy to be meaningful.
• Don’t overlook the emotional impacts of the findings on the team and on people with lived experience. Instead, prioritise care and open conversations. Check in with each other, make space for grief and frustration, practise collective care and make it okay for people with lived experience to step back when they need to.
• Don’t present or publish findings without the endorsement of the people who were closely involved in the research. Instead, check in with each person. Acknowledge the contributions of all the team in their preferred way and develop a dissemination strategy/plan with assigned roles. Never include people’s names on research outputs without their permission.
• Don’t be dogmatic about how to share the findings or only consider traditional research outputs such as papers and posters. Instead, also explore art, events, videos, comics or other creative communications.
• Don’t pick the format for communicating your findings without discussing options. Instead, explore and agree on what different audiences you’re trying to reach and the outcomes you want. Be specific about your audience, rather than saying ‘all clinicians’ or ‘all consumers’. You’ll likely need different formats for different audiences, and to involve people with different communication skills.
• Don’t leave consumers and carers out of the evaluation of the research and creation of recommendations for next time. Instead, ensure consumers and carers play a role in the evaluation to share their experience and shape future work.

[1] 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

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

[3] New South Wales Health. (n.d.). Power in partnership. Retrieved from https://www.health.nsw.gov.au/patients/experience/all-of-us/Pages/power-in-partnership.aspx

[4] 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.

[5] 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

[6] Australian Clinical Trials Alliance. (n.d.). Consumers. Retrieved from https://involvementtoolkit.clinicaltrialsalliance.org.au/consumers