The National Oncology Alliance patient rights and roles webinar series – the not-for-profit perspective.
The power imbalance across the health system emerged as a strong theme in our opening webinar about patient rights and roles, hosted by the National Oncology Alliance, founded by Rare Cancers Australia.
Delivered yesterday, 14 July, by a panel of leaders from Australian not-for-profits in the cancer space, the discussion explored patient rights and patient centricity with many highlighting the gap between intent and tangible action.
“While we say ‘patient-centric care’, what does the word centric really mean? Until we actually have a better idea of what we’re actually asking for in that space, we might not move the dial to where we would like it to be,” Sharon Winton, CEO at Lymphoma Australia stated.
This missing link was further examined by the panel as they acknowledged that the different roles within the health system played a significant part in shaping its construct and the delivery of activities which truly prioritised patients.
“The challenge for clinicians and policy makers is to find the fine balance between what’s necessary and what’s needed from a patient perspective,” Mark Brooke, CEO at Lung Foundation Australia said.
“Having access to timely data, drives patient choice and drives patient knowledge, and until we address that power imbalance where the knowledge is contained by the health professionals who are at the peak of their game – and I’m not bashing health professionals when we say that – but the system needs to change so that we can have access to reliable, accurate information.”
Assumptions made during the treatment journey were seen to be a challenge when defining the rights and roles of those involved.
“It shouldn’t be a presumption and a patriarchy which says ‘you’ll do what I say because you’re my patient and I know best’. It’s got to be a conversation and a more engaged view,” Richard Vines, CEO at Rare Cancers Australia shared.
“It’s changing but it’s really hard to get health professionals to understand the innate power imbalance between you as a patient and them as a specialist. That desk across which you are sitting is a major power barrier and we have to find ways to break that down.”
This was also acknowledged from a nursing perspective.
“We need to make sure that the patient understands what’s being said. I think a lot of the time the clinician will be saying things, but they (the patients) really don’t understand what’s being said and the implications for it,” Meredith Cummins, Director of External Relations at Cancer Nurses Society of Australia said.
The imbalance is evident when looking at the youth space as well.
“It’s really vital that specialists and nurses are talking not only to parents, but they are also addressing the younger patient. They need to feel confident in what’s happening to their bodies and to them. They need to have some agency,” Peter Orchard, CEO at Canteen explained.
The discussion touched on many inequities found across the hospital system.
“Some hospitals that are large tertiary institutions have got access to navigators for every person who has been diagnosed with cancer. Wouldn’t it be amazing if they were available to all patients regardless of what hospital they attend, they are all taxpayers, they all have a right to the correct information,” Cheryl-Ann Hawkins, Chief Executive at Melanoma and Skin Cancer Trials (MASC Trials) commented.
Thank you to all our panelists for lending their strong voices to this important conversation about patient rights and roles.
If you would like to view the full webinar, click here:
Continue the conversation with us
This is the first webinar in our four-part series.
The next session will be on Wednesday 21 July at 1 pm and will dive into the rights and roles of Australian cancer patients from the perspectives of treating clinicians, with this exciting panel of experts:
- Dr Ian Irving, Clinical Haematologist and Icon Group Medical Director
- Dr Christopher Steer, Medical Oncologist at Border Medical Oncology at the Albury Wodonga Regional Cancer Centre
- Prof Clare Scott, Professor of Gynaecological Cancer at University of Melbourne
- Prof John Zalcberg, Professor of Cancer Research at Monash University
- Prof Grant McArthur, Executive Director of the Victorian Comprehensive Cancer Centre
We will explore the diagnosis, management and treatment journey as it stands, and the challenges and opportunities within it for patients and clinicians alike.
All are welcome and registration is free.
Don’t forget to pre-submit your questions for the panel when you complete the registration form, or you can send them to [email protected]
By Dr Amanda Ruth