Consumer and community advocate Catherine Hughes
As COVID-19 continues to sweep across the world, researchers are in a race against time to understand the virus and find effective treatments or, even better, a cure.
But the speed with which research projects have been put together has consumer advocates concerned that a vital voice will be missing from the mix – that of the community.
In response, The Kids Research Institute Australia’s Manager of Community Engagement, Anne McKenzie, last week tapped her extensive network of consumer and community advocates to rapidly draw together Australia’s first COVID-19 consumer reference group.
The group, made up of 20 senior experienced community advocates from Western Australia, other states and territories – many of whom have been advising on The Kids Research Institute Australia research projects for years – met via video conference for the first time this week.
Here, consumer and community advocate Catherine Hughes – founder of the Light for Riley campaign, chair of the Wesfarmers Centre of Vaccines & Infectious Diseases community reference group, and director of the Immunisation Foundation of Australia – explains why she leapt at the chance to take part.
Q. As a consumer/community member, how do you feel about COVID-19?
A. Like many members of the community, I'm worried about COVID-19 and the impacts it will have on my family and the wider community. I worry we will not be able to access healthcare normally this year, I worry that many people will die, I worry about the economic impacts of this disease, and I worry about the mental health of those who feel isolated, including our children.
Q. How did you come to be involved in the COVID-19 Community Reference Group?
A. Having lost a child to a different infectious respiratory disease (whooping cough), I've been paying close attention to the COVID-19 pandemic. I understand how devastating infectious diseases can be and am really interested in how different people respond to this pandemic. I've noticed so far that research in this area has been so rapid and urgent that we haven't involved much of the community's voice yet – so when this committee was formed, I was very excited to be invited to join and didn't have to think twice.
Q. Describe the kind of input you expect to have.
A. As a member of the new COVID-19 Community Reference Group, I'll be meeting with committee members via Zoom where we'll be able to have some strategic and collaborative input into COVID-19 related research. So far I've also been asked to take part as an investigator on a couple of COVID research proposals. I've done my best to review the proposals submitted to ensure there are appropriate levels of community involvement planned, that the research will have a meaningful benefit to the community, and that the research can translate into policies, recommendations or medical interventions that will benefit as many people as possible.
Q. Describe the role you believe research can play, and what is motivating you to take part.
A. I believe research is the foundation of good healthcare and good health policies. It's essential that we prioritise research at this difficult and unprecedented time, as we need to ensure that the actions we are taking as a community and government are based on good evidence. It's also imperative we minimise the human suffering caused by the COVID-19 pandemic, and prioritising research on suitable treatments and vaccines is our best chance of doing this.
Q. Why is it so important to have this kind of community input?
A. This is a disease that will effect every single one of us in some way, so it’s a real priority to ensure COVID-19 research is properly in synch with the needs of our community. The community cost of COVID-19 is so high, so it will be great to see consumers and researchers working together to ensure that research is going to be of maximum benefit to the community.
The group was pulled together by pioneering consumer and community involvement expert Anne McKenzie, Head of Community Engagement at The Kids. Find out why she felt creating this reference group was a matter of urgency.