Each year at around this time, we put a call out for participants in our Consumer Involvement in Research training courses. You may (or may not) have heard about the program in the past and wondered “Is that something I could do?” Anyone can participate in the training. The term ‘consumer’ refers to anyone who has been affected by cancer, either directly or indirectly, as well as members of the public who may not have had any experience with cancer.
So, why involve consumers in research? At Cancer Council NSW we value the views of the community in the research we conduct and fund. To ensure our research is relevant and meets the needs of the community, we ask all researchers applying for Cancer Council NSW funding to involve a community member, or ‘consumer’, throughout their project. Our in-house researchers also include consumers in their project advisory committees.
And, that’s where our Consumer Involvement in Research training comes in. Our free annual training courses are designed to equip community members with the skills needed to become involved in cancer research. Graduates of the course can get involved by partnering with researchers to provide a real-world perspective on their work.
To give you a first-hand account of what the training involves and what it’s like to be a consumer in research, we caught up with one of our most recent graduates, Ash Lester.
Why did you want to become involved in cancer research?
Having been diagnosed with a rare cancer as an adolescent, I was really surprised and a little bit frustrated by how little the doctors knew about my cancer and the limited treatment options available. Hearing frequent reports in the media of potential research breakthroughs in the most common cancers added to this frustration, as it seemed very little research was being done into less common cancers.
After becoming involved in researching rare cancers, it was eye opening to discover how expensive research actually is and the limited funds which are available. It really hit home just how important it is to ensure that the research that’s carried out is relevant to patient’s needs and has a real potential to benefit them. It was this realisation that led to my decision to become involved as a consumer, in the hope I could help to ensure that the research being done is relevant and has the potential to benefit patients.
What did you have to do to complete the training?
The training involved completing a four-part online training course and attending a half day workshop at the Cancer Council’s office in Sydney. The online training was easy to complete and provided lots of useful information, while the workshop provided a great opportunity to hear from experienced consumers and get a better understanding of the different roles consumers can play, depending upon the type of research being carried out.
What did you enjoy most about the workshop?
The opportunity to hear from experienced consumers about the roles they had worked in, the impact their input had had upon research projects and challenges they had faced in working with researchers. As an additional benefit, I also really enjoyed meeting other people doing the training and hearing their stories.
What consumer roles have you been involved with since completing the training?
I’ve been involved with three quite different research projects to date, each at different stages. The research ranges from investigating the need for screening in patients at risk of anal cancer, to developing devices to detect radiation levels for patients undergoing radiotherapy, to testing of a new immunotherapy drug in the lab. For two of the projects, my involvement has been at a later stage of planning, and the role to date has involved providing input on new or further research grant proposals and assisting the researchers to translate information about their project into plain English. The most recent project is in the very early stages and I have been able to provide input into the research design and focus.
What are some of the challenges involved with being a consumer in cancer research? And how can you overcome them?
The main challenges I’ve faced are researchers being unfamiliar with the diverse ways a consumer can contribute to their research, and researchers involving me in a project at a late stage rather than during the planning phase. To assist in overcoming these challenges I’ve become more proactive in asking questions, making suggestions and informing researchers of different things I can assist them with.
Can you offer any advice to people looking to become involved as consumers in cancer research?
Do the Consumers in Research Training and register with Cancer Voices. Cancer Voices help match researchers and trained consumers based on the nature of the research project and the experience and skills of the consumer. All of my consumer roles have arisen as a result of referrals from Cancer Voices.
This year’s face-to-face Consumer Involvement in Research workshop will be held on Friday, 20 September. See more information and register online.