The Webinar Series
White Coats Foundation Presents
What is Consumer Led Research ?
The Webinar Journey & Purpose
Last year The White Coats Foundation ran a 2-part webinar series on “De-mystifying consumer and community involvement in research. As part of the outcomes of this series we produced a reflections paper and looked at the gaps/areas requiring further discussion and reflection. We sent out a poll to determine which areas were of greatest interest for inclusion in the 2022 White Coats Foundation Education webinar agenda. One of the top 3 topics was- ‘What is consumer-led research?
In our first webinar series we learned that consumer and community involvement is where consumers and the community actively work with researchers or research organisations to help shape decisions about health research priorities, policy and practice
But what is consumer-led research and how is it different to consumer involvement?
On Wednesday the 13th July we heard from a variety of stakeholders about what ‘consumer-led’ research means to them. The webinar included a discussion that opened the door to some different perspectives and ideas on what ‘consumer-led’ research means.
Watch the Webinar here
Our Co- Facilitator
Melinda Cruz is the mother of three babies born premature and the Founder of Miracle Babies Foundation; Australia’s largest and leading neonatal consumer group.
Melinda has a B.Sc (Genetics). In 2012, she was appointed as an Honorary Research Associate at the National Health and Medical Research Council (NHMRC) Clinical Trials Centre (University of Sydney, Medical School) and was the first parent to be an Associate Investigator on a NHMRC neonatal trial; LIFT.
As of February 2019, she is a Chief Investigator on the MRFF funded WHEAT (WithHolding or continuing Enteral feeds Around Transfusion) Trial. She is a trusted consumer expert to medical professionals seeking to improve care of premature and sick babies and impacts on the family. In 2014, Melinda joined the Perinatal Society of Australia and New Zealand (PSANZ) Consumer Advisory Panel and the PSANZ Clinical Trials executive committee.
In 2015, she joined the Australian Red Cross Blood Service Milk Bank Advisory Board. In 2016, she joined the NHMRC Clinical Trials Ready Development Committee and contributed to the dissemination of the results of the NHMRC BOOST II (ACTA Trial of the Year 1st Runner Up, 2017) and NHMRC APTS (ACTA Trial of the Year, 2018) Trials. In 2019, she was the inaugural winner of the Australian Clinical Trials Alliance (ACTA) Consumer Involvement Award.
Melinda has been instrumental in a number of other trials such as in assisting in obtaining a waiver of consent for the TORPIDO 30/60 Trial by presenting to the Lead Ethics Committee and in supporting parents in Australia during the Family Integrated Care (FiCare) Trial, published in Lancet Child and Adolescent Health in 2018, in which she is a co-author. To date, Melinda has been a co-author on a total of 16 publications in peer reviewed journals.
Melinda is a contributor to THRIVE Global, an international portal for health and wellbeing, in which she has published six articles to date, including a piece outlining the benefits of neonatal Point of Care Trials.