Consumer: Kathleen Wilkins has multiple roles
VCCC has a new process, providing financial recognition to people who contribute to research development, cancer care and cancer workforce education, when involved as active partners in our work.
Kathleen Wilkins is representative of the capable people who give their time and effort to supporting organisations like the VCCC. Kathleen is an active steering committee member, has consulted on an educational initiative and has been involved in communicating consumer perspectives alongside clinicians in a live webinar. All quite different roles – but easily interpreted and compensated when using the new VCCC consumer remuneration model*.
Contributes in many different ways
I am involved with the Hume Regional Integrated Cancer Services and heard about a consumer position on the VCCC Teletrials Steering committee. I put my name forward as I don’t think there is equity between regional and metropolitan patients when it comes to trials. I am aware that the VCCC is trying to overcome this inequity.
I lived in Melbourne most of my life before shifting to a regional area, so feel I have insight into how each operates having observed differences with clinicians in both areas. I feel as though I can play a role in drawing city and country closer together.
Development of training for healthcare professionals
Being on the VCCC Teletrials Steering committee has exposed me to some interesting work. A recent project involved storyboard development and the subsequent rollout of an online training module for clinicians and medical personnel in relation to teletrials. It was important to have a consumer perspective so that the training tool had relevance to patients, as they are the primary focus of teletrials.
The establishment of a teletrial seemed to be a barrier to some staff as it was felt there was too much work involved. I feel the online module and storyboard will allay some of these fears. I thought they were were well written, relevant and explained the teletrial process simply without being condescending.
Being involved in storytelling from a consumer perspective
It was an honour to be involved in the Monday Lunch Live online event. Public speaking is not something that phases me, however talking to yourself on a computer is a bit daunting. (Kathleen’s webinar was during the COVID-19 crisis as the healthcare community quickly adapted to communicating online).
Being able to put across the consumer point of view is important. As a consumer you don't always feel that the right people are hearing and listening to your point of view.
The live webinar gave me an opportunity to put our view and opinion out to a broad audience, I didn't realise how broad until after the session!
Many reasons to participate
Whilst I am very happy and appreciate being remunerated for my time with the VCCC. I do feel that receiving payment puts an expectation on the consumer to have more of an active part in meetings. This is not always easy as it takes a while until you feel comfortable speaking up and having an opinion. I would urge people wanting to be involved not to be put off. Your expertise is valued regardless.
I am also mindful that agreeing to take part in meetings, reviews or anything else could be misinterpreted as being in it for the money, which is certainly not something I consider when agreeing to participate. I am reassured that it is regarded simply as respect for the contribution made, which is great and probably not before time.
"I am reassured that it is regarded simply as respect for the contribution made, which is great and probably not before time."
Kathleen Wilkins, consumer
Hannah Cross is a VCCC program manager and says, “The value we gain from having people like Kathleen is immeasurable and I consider myself fortunate to work alongside her on the Teletrials Steering Committee. Until now we have been able to cover costs like transport and parking which is only fair. This next step of recompense enables us to cover more than just outgoings, it helps to recognise the expertise and commitment of our consumer relationships.”
"This next step of recompense enables us to cover more than just outgoings, it helps to recognise the expertise and commitment of our consumer relationships.”
Hannah Cross, program manager
Read more about the VCCC consumer remuneration model in the Consumer Engagement Toolkit.*
The model defines various consumer activities with segmented levels of participation for a consistent payment schedule across programs. In this case, Kathleen is remunerated as Partnership for her role on the Steering committee, as Involving when speaking at Monday Lunch Live, and Consulting for the online education module.