Doing research with lived/living experience: Benefits and challenges

Shaping research and policy

The phrase ‘nothing about us without us’, which is a long-established principle of disability rights advocacy, promotes the idea that those who are directly impacted by research and policy agendas have the right to be involved in shaping these agendas. The phrase is now used in a range of contexts to promote meaningful leadership by, and engagement with, lived/living experience communities, and represents a shift away from more paternalistic approaches to research ‘on’ groups that experience marginalisation, discrimination and disadvantage.

There are many benefits to seeking involvement of people with lived/living experience in your research. These include:

• Providing greater accountability to the groups and communities who the research is about and reducing the harms of extractive and exploitative research practices in over-researched communities

• Improving the researchers’ understanding of the research problem through capturing real-life experiences, which can lead to greater practical impact

• Enabling direct engagement with existing networks or advocacy groups, who are more likely to share their platform and endorse or disseminate the research, generating larger-scale impacts.

It is also important to consider the challenges of doing research with people with lived/living experience well. These include:

• Establishing a meaningful model of engagement may be difficult (and take time) if trusted relationships have not already been built with the community

• Involving people with lived/living experience of violence (including family and sexual violence), drug and alcohol dependency, homelessness, and similar hardships is likely to involve higher ethical risks, and require an HREC review, which has associated time/cost implications

• Involving people with mental health conditions including mental illness, or people with cognitive impairment or intellectual disabilities will require an HREC review, which has associated time/cost implications

• Implementing meaningful engagement strategies across the lifespan of the research project (including in design, implementation, and dissemination) will lengthen the timeframes required for each research stage

When faced with these challenges, some researchers may be unable to dedicate the time and resources required to ensure that the project has ethically and meaningfully engaged with lived/living experience communities. In such instances, a researcher may decide to:

• Undertake desk research and draw upon existing knowledge, applying what is relevant to their work and identifying where future research is required.

However, it is important to apply a critical lens to existing research, including whether and how the research has been shaped by people with lived experience.  

• Engage with professionals who work with lived/living experience groups as clients, such as case workers, health care workers, and mental health clinicians, to provide their perspectives based on their interactions during sessions/consultations.  

However, this approach has significant limitations, providing an imperfect ‘proxy’ for lived/living experience voices, undermining the rights of these groups, and risking reinforcing stereotyping and deficit narratives that may proliferate within professions.

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Alternative ways to manage the challenges of undertaking research with lived/living experience engagement include:

• Establishing a lived/living experience steering group/committee to oversee and approve key decisions throughout the research project (from design to completion). This can be supplemented by other practices such as employing community members as peer research assistants, noting that power imbalances need to be identified and addressed

• Partnering or collaborating with a lived/living experience self-advocacy organisation that can leverage existing ways of working to support the design and implementation of an appropriate model of engagement

• Slowing down the research agenda and focusing on embedding the processes/expertise within your organisation that will enable this research to be done in the future (e.g. hiring practices, planning agendas, authorship policies, networks and relationships).

More information

Melbourne Social Equity Institute Ethical and Equitable Digital Design Matrix for Community Engaged Research. University of Melbourne, Melbourne.  

Hodges, E., Leditschke, A., Solonsch, L. (2023). The Lived Experience Governance Framework: Centring People, Identity and Human Rights for the Benefit of All. Prepared by LELAN (SA Lived Experience Leadership & Advocacy Network) for the National Mental Health Consumer and Carer Forum and the National PHN Mental Health Lived Experience Engagement Network. Mental Health Australia, Canberra.

Byrne, L., Wang, L., Roennfeldt, H., Chapman, M., Darwin, L., Castles, C., Craze, L., Saunders, M. (2021). National Lived Experience Development Guidelines: Lived Experience Roles. National Mental Health Commission.

Guidelines for Co-Produced Research with Refugees and Other People with Lived Experience of Displacement (2023).  

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.

Lived Experience Australia and Community Mental Health Drug and Alcohol Research Network (n.d.) Safe Research Partnership with People with Lived and Living Experience Resources.