Lived Experience Network (LEN) formally Consumer Advisory Group

Consumer engagement and embedding lived experience is fundamental to the CRE program of research and translation. Current day the LEN Co-Chairs Dr Abbey Eeles & Loni Binstock are facilitating and guiding the group to ensure consumer priorities are meaningfully embedded in all research and translation projects.

CAG was established in early 2019 with the CRE Newborn Medicine. 

History

A systematic approach to consumer engagement in the CRE Newborn Medicine was established in early 2019 through the formation of a Consumer Advisory Group.  The Consumer Advisory Group meets with our researchers several times a year at the Royal Children’s Hospital in Melbourne and online to ensure that the CRE Newborn Medicine continues to carry out the highest quality research, specifically targeted to the needs of sick babies, their families, and the health professionals that look after them. You can read the Consumer Advisory Group’s Working Partnership Agreement here.

As leaders in implementing effective consumer engagement into a research program, Consumer Engagement coordinator for the CRE in Newborn Medicine team, Renae Allen, passionately advocated for more time and resources to be allocated to involving consumers in research studies when she was an invited speaker at the Melbourne Children's Knowledge Translation and Research Impact Training Seminar on Stakeholder Engagement at the Murdoch Children’s Research Institute (MCRI). Attended by over 70  number of researchers and clinicians from The Royal Children’s Hospital, MCRI and the University of Melbourne’s Department of Paediatrics, Renae detailed the ways in which the CRE Newborn Medicine has taken consumer engagement beyond just the requirements for many independent grant funding bodies, to a partnership model whereby the CRE researchers partner with consumers to set their research agenda, to inform protocols and to disseminate research findings. You can view Renae’s presentation here:

If you are interested in hearing more or getting involved in the LEN group, please email [email protected]