Leading with Lived Experience across the research life cycle

By Catherine Brasier, Dan Chamberlain and Sarah Wilson.

How can researchers and people with Lived Experience expertise effectively and authentically work together in Lived-Experience-centred research?

Along with colleagues, we have developed a structured approach, namely the “Wellways Six Steps of the Research Life Cycle,” which is shown in the figure below and described, along with 16 key actions. The aim is to help researchers and people with Lived Experience expertise to “work it out together.”

People with Lived Experience expertise demonstrate deep understanding of the following elements to drive their input:

1. their own personal experience of the issue at hand
2. their understanding of other people’s Lived Experiences
3. Lived Experience values and practices
4. the history of the Lived Experience movement – including the impact of the systemic and social factors.

Our work is informed by Lived Experience that is a significant and life-changing direct experience of mental health challenges, distress or trauma. It acknowledges the unique insights and awareness that come from these experiences of adversity and healing. It encompasses experiences of:

1. accessing mental health and wellbeing services (ie., consumer Lived Experience); and
2. supporting someone who experiences mental health challenges, distress or trauma (ie., family, carer, supporter and kin Lived Experience).

Our approach, however, is likely to be relevant to a wider range of Lived Experiences.

Six steps of the research life cycle

The six steps of the research life cycle are:

1. Connect and identify: Who do you need to collaborate with to identify your research question and create an optimal research team?
2. Power and decision making: How will your study implement Lived-Experience-centred power and decision-making processes?
3. Method: What methods and research processes will you use to answer your research question in a Lived-Experience-centred way?
4. Data collection: How will Lived Experience values and methods inform how you collect the information to answer your research question?
5. Data analysis: How will you work with people who have Lived Experience to make sense of the information that you have collected and decide what it means? How will people with Lived Experience be involved in checking that this interpretation reflects the perspectives of the research participants (eg., sensemaking and member checking)?
6. Sharing: How will you share the findings and recommendations from your research project with study participants, the community and other key stakeholders?

Specific actions

We have designed 16 actions that may be useful, while recognising that each research project is unique and may require modifications.

Connect and identify actions:

1. Create a Lived Experience intention and impact statement, addressing questions such as: Why is Lived Experience important to this research project? What roles and input will people with Lived Experience have at each step of this project? 
2. Harness community and industry relationships, addressing: Who do you need to connect to build the relationships key to your project? Bring together people from industry and community whose connections / relationships are key to your project.
3. Identify a research question and validate that your research question is important to your community by defining the research gap according to Lived Experience priorities, needs and values.
4. Form a Lived-Experience-centred research team by articulating how Lived Experience and intersectional expertise will be integrated throughout the research project.

Power and decision-making actions:

5. Embed Lived Experience and intersectional expertise throughout the project by mapping opportunities to integrate Lived Experience and intersectional leadership and wisdom throughout the research project.
6. Create a plan to ensure that your research project is accessible and inclusive by articulating how you will embed access and inclusion throughout your project.
7. Create a Lived-Experience-centred research culture and processes that unite the team by creating a Lived Experience and participant-centred research plan.
8. Create a plan to support the mental health and wellbeing of all members of the research team.
9. Create a plan detailing how the research team shares power and makes decisions by understanding how power impacts your research team.

Methods actions:

10. Develop a research method that is rigorous and Lived-Experience-centred by brainstorming five things that you have developed in the other actions which should be reported in the methods section.
11. Explore Lived Experience and participatory research methods by identifying the three best examples of co-production, co-design or participatory research that relate to the research question.
12. Explore expert advisory and decision-making groups, committees and governance groups addressing questions such as: What is the purpose of your Expert Advisory / Decision-Making Group? Will members be contributing to decisions (ie., Expert Decision-Making Group) or only providing advice (Expert Advisory Group)?

Data collection action:

13. Create a Lived-Experience-centred data collection plan addressing questions such as: What are five ways (or more!) that people with Lived Experience could be active members and leaders in this project’s data collection and what support, mentoring and training is required?

Data analysis action:

14. Create a Lived-Experience-centred data analysis plan addressing questions such as: What are five ways (or more!) that people with Lived Experience could be active members of this project’s data analysis and what support, mentoring and training are required?

Sharing actions:

15. Create a Lived-Experience-centred dissemination plan addressing questions such as: Who will we share our findings with? How? When?
16. Report your research project in a way that is Lived-Experience-centred and rigorous by addressing questions such as: Which guidelines and standards should inform how the research team reports and communicates? How will the research team tailor reporting so that consumers and families, carers, supporters and kin feel respected, heard and valued? What are three good examples that could guide the research team?

Conclusion

What has your experience been as a researcher or someone with Lived Experience expertise? Do the six steps and 16 actions resonate with you? Is there anything you would add? How would you evaluate the impact of engaging people with Lived Experience as leaders and active contributors in your research project?

To find out more:

Brasier, C., Kolovos, D., Scott, A., Lyall, C., Conlon, A., Jonas, R., Lilac, J. L., Little, J., Schirmer, J., Trewin, R., Joseph, C., Zirnsak, T and the Collaborative Centre team. (2024). Working it out together: A concise workbook for Lived Experience-centred mental health and wellbeing research practice. The Victorian Collaborative Centre for Mental Health and Wellbeing and Wellways Australia: Melbourne, Australia. (Online):  https://vccmhw.vic.gov.au/projects/working-it-out-together

Most of this i2Insights contribution is taken verbatim from this report, which has worksheets, exercises, references and additional information.

Use of Artificial Intelligence (AI) Statement: Artificial intelligence was not used in the development of this i2Insights contribution or the work on which the contribution is based. (For i2Insights policy on artificial intelligence please see https://i2insights.org/contributing-to-i2insights/guidelines-for-authors/#artificial-intelligence.)

Biography: Catherine Brasier PhD focuses on supporting better connections between people with Lived Experience, research and service delivery / development. She is the National Manager of Evaluation and Research (Lived Experience) at Wellways, one of Australia’s largest mental health, wellbeing and carer service providers. She is also an Adjunct Research Fellow in Social Work and Social Policy at La Trobe University in Melbourne, Australia. She draws on her experience of mental distress and personal recovery, plus her experience as a mental health worker.

Biography: Dan Chamberlain PhD is a post-doctoral Research Translation Officer at the Victorian Collaborative Centre for Mental Health and Wellbeing in Melbourne, Australia. He is a transdisciplinary researcher, with expertise in social network analysis.
Photo credit: Sam Biddle.

Biography: Sarah Wlison PhD is the Chief Executive Officer of the Victorian Collaborative Centre for Mental Health and Wellbeing in Melbourne, Australia. She has a sustained track record in research translation embedded in co-design with people with lived and living experience, and is passionate about translating research into practice and bringing lived, clinical and research expertise together to create a mental health system that truly works for people. She is a Fellow of the Australian Academy of Health and Medical Sciences and the Academy of Social Sciences in Australia.
Photo credit: Sam Biddle.