Pioneering health consumer advocate Anne McKenzie AM has been awarded NHMRC’s Consumer Engagement Award in recognition of an almost 30-year career during which she has helped thousands of Australian clinicians and researchers understand the value of listening to consumers.
I don’t wear my pearls very often anymore – I don’t have to.
Once upon a time they helped me feel ‘smart’ when I was getting ready to stand in front of an audience of experienced clinicians and health researchers to try to convince them why they needed to listen to consumers – often ordinary suburban parents just like me – before they made decisions that would affect people’s lives.
When I first dabbled with consumer advocacy in the early 1990s as a mum trying to speak up for my youngest daughter, who had been born with spina bifida, I didn’t even know what the phrase meant. I soon learned, however, that if I wanted to have a say and get the answers I wanted from clinicians and the health system, I would have to be persistent.
That refusal to take no for an answer has paid off. Three decades later – thanks to a lot of hard work and support from many, many others – I’m privileged to find I have become a sought-after voice when it comes to best practice consumer involvement in health and medical research. Amongst other roles I’ve been fortunate to be a member of numerous state and national committees/groups feeding into policy, practice and research decisions around some of our most challenging health and medical issues, including domestic violence, fetal alcohol spectrum disorder (FASD), disability, and vaccination.
My consumer engagement journey started small. In the mid-1990s I became the first Parent Advocate at Perth’s Princess Margaret Hospital and became involved with the WA Health Consumers Council. Later, I spent nearly two decades leading the gold-standard Consumer and Community Involvement Program at The University of Western Australia and Telethon Kids Institute.
These roles led to other opportunities, including senior consumer representative with the Consumers Health Forum of Australia, chair of the Health Consumers Council WA, advisory roles with the NHMRC, Federal Health Department and others, keynote speeches to international meetings, and roles on international working groups. Along the way, I built a strong network of community advocates across Australia, so that at any given moment I could connect researchers with relevant consumers to help guide their projects.
Over the course of my 20-year connection with the Telethon Kids Institute, I helped establish a series of consumer reference groups featuring ~400 community members. Their advice is regularly called upon by research teams, with the result that consumer engagement is now second nature across the Institute. I returned to Telethon Kids in 2019 as Consumer Engagement Manager, devising and launching Telethon Kids CONNECT – a unique program designed to recognise and reward community members’ contributions to research.
One of the things I’m proudest of over the course of my consumer advocacy career is the way I’ve not just helped researchers understand why consumers need to be involved in research, but given them the tools to make this happen.
It became clear to me very early on that there was a desperate need for formal training to ensure consumer engagement in research was undertaken in the best, most considerate and effective way. In 2007 I developed and nervously delivered my very first involvement training workshop for consumers. By 2009, in collaboration with UK colleague Bec Hanley, we had expanded the training in direct response to requests from researchers who wanted help in implementing consumer involvement.
My team and I have since delivered 155 face-to-face training workshops on best practice consumer involvement in medical research to more than 3,000 researchers and consumers across the country. When COVID-19 hit, we quickly transitioned to virtual workshops to keep the show on the road. At the same time – as research teams mobilised in response to the pandemic – we rallied our extensive network of experienced consumer advocates and established a national Community Advisory Group to provide input into rapidly emerging research projects.
Since April 2020 this group’s 22 senior consumer advocates, drawn from across Australia, have contributed to 24 local, national and international research projects, conferences and webinars, as well as the development of Federal Government priorities for future pandemic-related research. Their work has been recognised internationally as a best practice model for effectively and rapidly engaging the community in research during a pandemic, and will be used as a case study in the NHMRC’s Ethical Guidelines for future pandemics. I am incredibly proud of this group’s work – they personify the community’s genuine interest in having input into the important research happening across the globe.
Simultaneously, we’ve moved to ensure the long-term sustainability of our training program, working with the University of Queensland Australasian Cerebral Palsy Clinical Trials Network’s Centre of Research Excellence to develop a team of 11 trainers to deliver our workshops into the future.
I’m immensely humbled to have received the NHMRC Consumer Engagement Award, but know any success I’ve had is thanks to the very significant support I’ve received from others along the way – especially founding Telethon Kids Institute Director, Professor Fiona Stanley, Emeritus Professor D’Arcy Holman from the School of Population and Global Health at UWA, and current Telethon Kids Director, Professor Jonathan Carapetis.
These three senior champions helped me do things I didn’t know I could do, because I thought I was ‘just’ a consumer advocate. I try hard not to use the word ‘just’ any more, because thanks to that support I’ve learned what I’m capable of. That’s why even though I don’t need to wear the pearls anymore, I sometimes still do – to remind myself of how far I’ve come.