Patients call for power shift

16 July 2021

Access to all the information on their condition, choice of healthcare providers and longer appointment times are among the initiatives patients are pushing for in a bid to gain greater control of the management and treatment of their own chronic and life-threatening conditions.

In the first of a series of four webinars hosted by the National Oncology Alliance (NOA), the heads of patient groups Rare Cancers Australia (RCA), Lung Foundation Australia, Lymphoma Australia and Canteen participated in a panel discussion on the rights and roles of patients.

RCA’s Richard Vines said terms such as patient centricity and patient care were “bestowed” upon people who otherwise had a reasonable right to expect that society would meet their needs in a predictable and generous way. He called for government, industry and clinicians to stop perceiving patients in a “patriarchal way” and to recognise them as citizens with rights.

“It’s a really important shift that we need to explore,” Vines said. “A lot of what we know as patients was shaped in the pre-internet, pre-social media era of the eighties and nineties. We’ve got to come back and question this.”

The panel questioned the role of healthcare providers in having all of the information and power to make decisions for their patients, with Vines saying clinicians should not decide what information patients were given and the options presented.

“There shouldn’t be a presumption in the patriarchy that 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,” he said, arguing factors such as longer appointments shifted the power imbalance back to the patient.

“It’s too rushed. We need time to sit and chat and tease out of people things like what their priorities are and how much they are prepared to invest in treatments that might save their life.”

Lymphoma Australia’s Sharon Winton described the notion of patient centricity as “tokenistic” and argued informed patients could better navigate the system while the less informed struggled.

Lung Foundation Australia’s Mark Brooke called for ‘navigators’ to help guide patients by discussing information and options available to ensure they were fully informed.

“If you want to be able to drive reform then you need to put information back in the hands of patients so they can make informed decisions about where they are treated and who they can be treated by,” he said.

“Having access to timely data drives patient choice and drives patient knowledge. The system needs to change so we can get reliable, accurate information and when we get that, we can make decisions about who treats us and how.”

“As patient advocates holding systems, clinicians and ourselves to account to good standards is not unreasonable,” he said. “… If the system doesn’t have a rights perspective at the centre of it, then how do we ensure that the policy levers, the settings, the necessary investment are the right levers that allow patients to live a life.”

Canteen’s Peter Orchard said a national data collection mechanism was key to patient-centred care.

“Accountability is critical so we don’t fall back on anecdotal situations where it’s much harder to make policy-based decisions,” he said.

All.Can Australia co-chair Bill Petch has also called for a ‘navigator’ to help patients find their way through the system in a statement published on the All.Can website.

“While it is great to see that patient-centric health services get attention at the national level, the existing nursing and navigator models target only a small number of more common cancers and don’t have the capacity to solve many problems patients are facing,” he said. “By flipping the approach and putting the patient first, we will gain their support as well as a powerful force advocating for change.”

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