when doing research

Consumers, carers, researchers and others do the research together – understanding what the data means and how it can be used. Revisit the key principles.

Expand all
Collapse all

This phase can involve:

  • finding participants (recruitment)
  • doing ethics applications
  • collecting information and results
  • working out what the research means together (sometimes called co-analysis)
  • trying-out different ways to work as a team
  • learning about each other’s skills and experiences
  • checking findings with participants
  • working through problems
  • evaluating how it went
  • checking back to the key principles
  • or something else.

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

  • Buddy up conventional researchers with consumers and carers to learn from each other. Respect each other’s expertise.
  • Consider ways to bring in design practices such as use of visual practice (e.g. drawing, photos, props), through probes, toolkits or prototypes [5,6,7], using culturally specific approaches [8] and by engaging designers with specific expertise (e.g. usability, instructional design, visual design, designing with Country). Invest in learning for researchers, consumers and carers.
  • Run meetings and workshops with care and hospitality so everyone involved can participate. Be flexible with meeting times (including out of standard work hours), places (away from clinical places) and formats. Give choices. Ensure accessibility and welcome.
  • Adapt ways of working and methods to be more accessible – for example, displaying data in a simpler way for interpretation.
  • Co-write regular updates on the results and on project progress for everyone involved the research. Even during quiet times or when you’re waiting for a decision to be made.
  • Notice the emotional impacts of the work on the team and on people with lived experience. Prioritise care and open conversations. Check in with each other, make space for positive impacts as well as grief and frustration. Practice collective care and make it okay for people with lived experience to step back when they need to.
  • Check in regularly with the team and one-to-one to make sure everyone feels comfortable with the decisions being made.
  • Have a structured project plan with room for flexibility.
  • Work with consumers and carers to interpret data and troubleshoot unexpected results.
  • Name the work together. Use creative prompts such as mood boards, cards and name generators.
  • Ask for and find opportunities for consumers to teach and present research.

Here’s what consumers and carers told us, and what we learned from other resources [1,2,3,4,9].

  • Have access to regular peer support.
  • Discuss different roles that work for different availability and skills.
  • Notice how the research is affecting you (in good and bad ways). Don’t do more than you want to.
  • Discuss flexibility in dealing with health difficulties, caring responsibilities, cultural business and other commitments.
  • 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.
  • Have someone to go to if there’s an issue and another person if you can’t talk to the key contact.
  • Give and get feedback regularly.
  • Be reminded about your value and your strengths (we know this matters to researchers, too).
  • Notice and share ways to make it easier to take part (for you and others).
  • Co-create regular updates about the project.
  • Get opportunities for learning, presenting and teaching.

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

check in
questions and actions to check how it’s going and what could change [download PDF]

talk about roles (editable)
An example of identifying roles for people with lived experience and tips for planning for success [Download Powerpoint]

other tools (not by us)
NSW Health & Beyond Sticky Notes – engagement and design method cards [PDF]

​​Auckland Co-design Lab – framing and enabling participation guide [PDF]

Tomitsch, M., et al. Design. Think. Make. Break. Repeat. [toolkit and templates]

Hemming, L., Pratt, D., Bhatti, P., Shaw, J., & Haddock, G. (2021). Involving an individual with lived‐experience in a co‐analysis of qualitative data. Health Expectations, 24(3), 766-775 [article]

Emma Blomkamp – shades of co-design [blog]

All of Us respectful engagement tools by NSW Health:

  • Don’t overlook the emotional impacts of the work on the team and on people with lived experience. Instead, prioritise care and open conversations. Check in with each other, make space for positive impacts as well as grief and frustration. Practice collective care and make it okay for people with lived experience to step back when they need to.
  • Don’t show consumers and carers the results after the data collection and analysis are finished, and then ask for feedback. Instead, do the analysis together [11]. Build skills in your team by providing training for consumers to collect/analyse data and interpret the results together.
  • Don’t make it difficult for consumers and carers to be involved in the team (e.g. through lengthy written applications and e-learning modules, or by using overly formal interviews). Instead, prioritise warmth, access and inclusion. Think carefully about what information is really needed and how to break down complex information.
  • Don’t assume everyone knows the words you’re using. Instead, explain technical terms in plain English, check if everyone understands the language used, and avoid or explain acronyms. Provide key terms.
  • Don’t re-write language about other people’s identities and experiences or focus only on what’s wrong with a group or individual. Instead, agree on language that’s honest about people’s needs and honours their strengths. Ensure words about people and their bodies are suggested by them, not people from outside a group – e.g. see [10].
  • Don’t hide issues or feedback from consumers and carers. Instead, schedule regular check-ins. Book time together well in advance. Be honest when there’s been a change, such as loss of funding or support, or negative feedback from community. Make time to process frustrations and create strategies together.
  • Don’t disregard policies and limitations that could impact the research and research team. Instead, be transparent with the team and find creative ways to work within and across systems.

[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] 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] 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

[5] Sanders, Elizabeth & Stappers, Pieter Jan. (2014). Probes, toolkits and prototypes: Three approaches to making in codesigning. CoDesign. 10. 10.1080/15710882.2014.888183.

[6] Langley, J., Wolstenholme, D. & Cooke, J. (2018). ‘Collective making’ as knowledge mobilisation: The contribution of participatory design in the co-creation of knowledge in healthcare. BMC Health Serv Res 18, 585. https://doi.org/10.1186/s12913-018-3397-y

[7] Blomkvist, Johan & Segelström, Fabian. (2014). Benefits of External Representations in Service Design: A Distributed Cognition Perspective. The Design Journal. 17. 10.2752/175630614X13982745782849.

[8] Sharmil, H., Kelly, J., Bowden, M., Galletly, C., Cairney, I., Wilson, C., Hahn, L., Liu, D., Elliot, P., Else, J., Warrior, T., Wanganeen, T., Taylor, R., Wanganeen, F., Madrid, J., Warner, L., Brown, M., de Crespigny, C. (2021). Participatory Action Research-Dadirri-Ganma, using Yarning: Methodology co-design with Aboriginal community members. Int J Equity Health. 2021 Jul 12;20(1):160. Doi: 10.1186/s12939-021-01493-4. PMID: 34247644; PMCID: PMC8274049.

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

[10] TransHub. (n.d.). Researchers as allies. Retrieved from https://www.transhub.org.au/allies/researchers

[11] Horner, L. K. (2016). Co-Constructing Research: A Critical Literature Review. Arts and Humanities Research Council AHRC. Retrieved from https://www.pure.ed.ac.uk/ws/portalfiles/portal/136742472/Horner2016_Co_constructing_Research_Lit_Review.pdf

go back – decide how to research

go to the next section – let people know the results