More than a story? The roles and influence of people with lived experience within integrated care

More than a story? The roles and influence of people with lived experience within integrated care

HSCU was pleased to host Professor Robin Miller from the University of Birmingham recently, as he challenged a room of attentive researchers, clinicians and professionals to consider how we can best support “citizen leaders” – those with lived experience who share their stories – when undertaking our work.

The seminar was the first of a series being run by the Consumer Engagement Committee for the School of Public Health and Preventive Medicine, chaired by the HSCU’s Associate Professor Darshini Ayton.

Monash University FMNHS staff and graduate research students can watch the seminar on our intranet.

Prof Miller offered insights from his study, which documented the experiences of citizen leaders of integrated care within twelve countries, and challenged the room to consider opportunities for greater engagement of people and communities within strategic activity, including their different roles, their use of stories as a tool for change, and how the many system barriers could be addressed in practice.

Prof Miller began with the importance of “telling stories” and how those stories fit within our cultural fabric.

“Stories help paint a picture, give a sense of identity, tradition, and a shaping of others’ and our own interpretations,” Prof Miller said. “They are a real part of human identity and connection.”

The room heard about the importance of supporting those with lived experience to share their stories of accessing health and social care systems, and how we should view these interactions as the foundations of a long-term relationship between community and research, that must be open and honest, supported and nurtured, to build a sense of trust and therefore make a difference.

He encouraged the inclusion of “citizen leaders” and meaningful programs of community and consumer involvement to be standard in all new research, to ensure the voice of those impacted by the changes we are striving to implement, is front and centre.

Prof Miller is an applied academic with an international reputation in relation to integration, leadership and implementation within health and social care. He is the Joint Editor in Chief of the International Journal of Integrated Care, a Senior Fellow of the School for Social Care Research, and the coordinating lead of the Universitas 21 Social Work Community of Practice. He is also the UK lead for the Demonstrator model of the Centre for Improving Adult Social Care Together.

Read Prof Miller’s paper, Builder, Expert, Disruptor, Leader: The Many Roles of People with Lived Experience.