The Cancer Survivorship for Primary Care Practitioners program is an educational program which is presented as a four week, part-time massive open online course (MOOC) to assist GPs and community healthcare professionals to support their cancer patients through all stages of the disease. The course was developed collaboratively with the University of Melbourne and the VCCC, and consumers were involved from the beginning.
Some were invited to help design content for the course and others featured in the course videos. At its one year anniversary, more than 2,000 people had enrolled in the program.
At the time, I wasn’t formally involved in any patient or consumer committees. I think it was Sue, my breast care nurse at Royal Melbourne who first told me about the program. Initially I was contacted by Michelle and Kyleigh from the VCCC Education team and they invited me to be involved. I was diagnosed with Stage 2 breast cancer and underwent surgery in April 2016, so it has been a few years now with no recurrence or spread.
Being involved in the Cancer Survivorship course was a good experience overall. I have a professional background in counselling so I could really see the value of having a balance of stories and experiences for professionals to learn from.
I am also on the organising committee for the VCCC Survivorship Conference. I’m not able to attend in person for meetings but I phone in each month, so it is good to be involved but it is not a huge commitment in terms of travel or additional workload. I appreciate being able to offer a perspective and I do think I add some value because of what I have been involved in professionally. This level of involvement suits me. I can decide to do as much or as little as I’m able, alongside work and family.
I enjoyed doing the filming. The camera guys were lovely and warm. But I did say no to holding up a photo of my kids. I was asked questions by a person off-camera, so it was fairly straightforward. We each contributed to a theme and I assisted with the Shared Care topic.
I do believe that organisations who seek consumer involvement are moving towards greater authenticity. I would say to anyone who wants to get involved to be as honest as you can. We need to guard against that feeling of needing to be ‘good’. In my own experience, I was aware of a little bit of self-censoring. There is a bit of a compulsion to say the positive. And that is not what cancer is about. I think that kind of narrative leaves out what is really hard.
Something like the MOOC has got a long lifespan. That’s something I didn’t really think about when I got involved. Some time later a physiotherapist colleague told me they had seen me on video. I was OK with that, but you need to think about your privacy concerns and whether something could be in the public domain that you would rather keep to yourself.
I really am open to thinking about anything. I didn’t specifically seek these programs out but all the same, I am glad I could be involved and make a positive contribution from something that was pretty terrifying at the time. I would really like consumer stories to be full and enriched and they need to be told in the right way.
