How do researchers involve the community in their work?
By Cancer Council NSW
Cancer Council NSW invests over $18 million into cancer research every year. To make sure that the research we fund and conduct has real-world benefits, we involve members of the community in our work. These ‘consumers’ help us choose what research we fund and shape how that research is conducted. Consumers have typically been personally affected by cancer and understand the health system, so they offer researchers a really valuable and unique perspective.
What’s been your experience working with consumers?
Involving consumers in my research has been so much more than “oh, can you help me with my research project?”. It’s been an enlightening, personally rewarding and positive experience.
I’m currently researching Lynch Syndrome and have been working with a consumer called Susan Morris. Susan is the Executive Director of Lynch Syndrome Australia, so she carries the Lynch Syndrome gene and has experienced cancer herself. Her knowledge and insights have greatly improved my research. My working relationship with Susan has evolved such that I would now consider her a friend; seeing her experiences first-hand has made me even more passionate about my work.
What’s your research about and how have consumers shaped your work?
Lynch Syndrome is a genetic condition that increases your chances of developing cancer. People with Lynch Syndrome have a 1 in 2 chance of passing it on to their children.
The good thing is, you can easily test for Lynch Syndrome, which enables doctors to prescribe personalised treatments. But taking the test can often be a difficult and complex decision. As you can imagine, when a person is told they’re at risk and is recommended to take the test, the possibility of testing positive can be overwhelming. And when someone finds out they have the condition, they can often feel anxious about letting family members know they may also be at risk and to consider taking the test too.
So, part of our research involves interviewing people to identify what might hold someone back from getting tested. For example, if you have children, are you more likely to choose to not take the test? How can we support people through the process of getting tested and explaining it to their children?
Susan has been instrumental in ensuring our research methods are ethical and appropriate. Drawing on her lived experience with Lynch Syndrome and cancer, she recommended that we interview members of the general public first – posing the questions as hypothetical scenarios. Once we gain some more experience here, we might move on to interviewing people who’ve had cancer or Lynch Syndrome in the future. We hope that this work and our wider research program will ultimately improve the way patients are supported and cared for in the future.
How do you meet consumers?
It’s common for researchers and consumers to be matched up by the Translational Cancer Research Network (TCRN) or Cancer Voices NSW. That’s how I was connected with a consumer named Mary Potter for a past research project. And when I was working with Mary, she introduced me to Susan, so that was more of an ad hoc, but really worthwhile introduction.
What advice do you have for researchers new to involving consumers in their work?
It’s crucial for researchers and consumers to find an arrangement that works for both of them. So, I’d recommend meeting and getting to know each other a bit before diving in. What are your goals? What are your interests? Do you have a meeting place that works for both of you?
It’s also very important that researchers proactively communicate about what they’re looking for. For example, if you’re developing a research proposal, ask the consumer if they would be happy to review it, tell them the kind of feedback you’re looking for, and find out early on how much time they’ll need. This will all make it clear what the commitment will involve and when it’ll end.
What are some challenges of involving consumers in your research?
As a researcher, I have expertise in a particular area. But, often, consumers want to see other types of research be conducted or want to see results more quickly. As a researcher navigating these types of situations, you’ve got to be up front about your particular skills and research interests. You should also speak up about things like ethics processes, which can be stringent and take time. This prevents misunderstandings. You can also connect your consumer to relevant people to help them advocate for other research they’re interested in.
Why has your relationship with Susan worked so well?
If you want to look at it pragmatically, our working relationship is successful because it benefits both of us. Through working with me and Cancer Council NSW, Susan has been able to help shape Lynch Syndrome research. In turn, Susan’s given me opportunities to present at Lynch Syndrome Australia conferences and meet people from the Lynch Syndrome community.
From a more personal point of view, I consider Susan a friend. Overall, working with her, getting to know her and seeing her go through some really difficult times with cancer… I now have a personal passion for researching Lynch Syndrome and making sure that the health system can make use of the discoveries we make.
We hope this blogpost has lifted the lid on how cancer researchers involve consumers in their research. Without consumers, scientists like Natalie couldn’t make the real-world difference that they do.