Illuminating Lived Experience

The lived experiences of people involved in care – from informal and formal care workers to the people they support – is foundational to the Australia Cares project. To learn from the ways people with lived experience are included in co-design and research methods, the Sydney Policy Lab initiated reflective research that has resulted in a Lab Note on Illuminating Lived Experience (pdf, 1MB).

Through a series of interviews, dialogues and collaborative writing processes, co-authors explored tensions between different approaches and core concepts underpinning lived experience methods and shared examples of those methods in practice.

Illuminating Lived Experience poses questions that may help guide researchers and policymakers seeking to engage people with lived experience and three core principles we believe are required for such engagements.

The Lab Note aims to encourage researchers to be creative in the ways co-design and lived experience are approached while being true to the critical roots of participatory methodologies. Rather than prescribing methods, the principles and practices developed are offered as a guide – a starting point for play.

Guiding questions for engaging lived experience

Co-authors distilled three questions that can guide research design and elicit reflection and action from researchers and policymakers engaging lived experience:

1. How are we ensuring our relationship practices with persons and communities are reciprocal and not extractive?
2. How are we including people from diverse communities, at their discretion, as active and equal members of our research teams in ways that allow them to exercise agency and autonomy?
3. How are we collaboratively identifying and evaluating tangible evidence our collaborators benefit from their involvement and the research outcomes?

Three core principles

Through this project, three core principles and values emerged as foundational to engaging people of diverse experiences.

1. Commit to critical reflection and ongoing learning at personal and institutional levels.
2. Commit to sharing power and ensuring people with lived experience and communities are involved and in the lead throughout the research lifecycle. Involve people in inclusive and generative ways, wherever possible on terms they decide.
3. Commit to involving the cultures and institutions engaged in this work to properly and ethically value, respect and benefit people and communities of diverse lived experiences in long-lasting ways.

Lab Notes

Illuminating Lived Experience is the first publication in the Sydney Policy Lab’s new series of papers on methodology: Lab Notes. The series will focus on how community-centred policy is made, sharing the thinking and techniques that shape how our collaborators work. The Lab looks forward to sharing more in the months to come.