Community engagement specialist Anne McKenzie
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, Ms McKenzie explains how the new COVID-19 Community Advisory Group will work and why it is so important to ensure the community voice is included in coronavirus research efforts.
Q. What will the group’s job be? What will they be able to contribute to the research?
A. Their roles will be varied but will mainly concentrate on providing a community perspective to the research – for example making suggestions about how research can be conducted when people are not easily able to come into the Institute, and asking questions about who the research is targeting, and how people from Aboriginal and ethnic communities are being included. This will ensure researchers have these perspectives in mind when developing projects under intense time pressures.
Q. Things are moving so quickly, with COVID-19 research projects springing up all over the world – why is it so important to take the time to ensure the community voice is part of those projects?
A. The community is the ultimate end user of any research, and if we want them to be on board with the results of research, it’s vital they feel connected to what is being done. The Kids has worked hard over the past 20 years to ensure that this has become standard practice for our researchers, and we currently have about 400 community members on reference groups attached to research projects across the Institute.
Q. Describe how you have pulled together this community reference group, and how it will work.
A. I was really concerned that a lot of COVID-19 research was being rapidly developed, both in Australia and elsewhere, without any apparent input from the community, so was pleased when, a little over a week ago, I was approached by a senior researcher for some help in communicating with the community about COVID-19-related issues. He wanted advice on how he could speak to people about potentially contentious issues like the rationing of intensive care beds and equipment, should that became necessary, as well as consent issues relating to data collection.
Given the Institute’s longstanding commitment to community engagement, I was confident we could find people to provide considered, sensible advice and input. Usually it takes about 6-8 weeks to advertise for people to be involved in research projects and get to the point of a first meeting. This time, we needed to act quickly to ensure a community voice in this fast-moving space. That same night I invited 21 people from every State and Territory in Australia, both to answer this particular researcher’s request and form an ongoing group to support COVID-19 research. By the next day, 20 had accepted the invitation – the other was unavailable. Just a week later we’ve already held four meetings, with more scheduled with researchers across Australia who will be collaborating on The Kids’ coronavirus research.
Q. What kind of experience and expertise do these consumer and community involvement representatives bring to the table?
A. The people we invited to be part of the COVID-19 Community Advisory Group have ‘lived experience’ – either through themselves or their family – covering a wide range of health conditions and ages. Many are already serving on high level committees at the Institute, with some also involved in other State and national consumer advocacy roles. They are informed, connected with a very wide range of community groups, and able to speak up and ask appropriate questions.
Q. How will you make sure their contribution counts?
We truly value this generous commitment to community engagement, especially since group members are volunteering their time. We’ll be making sure we get feedback from researchers about how valuable the community input was, how it is being used, and how it might be improved, so advisory group members know it’s not just a token process and can make sure they’re providing the best possible support to the researchers.
Hear from 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 – about why she leapt at the chance to take part in the COVID-19 Community Advisory Group.