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01 Dec 2022

‘In the same room, on the same page’: consumers’ take on the 2022 COSA ASM

  • VCCC Alliance

The theme of this year’s COSA Annual Scientific Meeting – Equitable cancer care for all – offered a rare and unfiltered view into the raft of inequities still experienced by so many people.

Attending the conference were Jo Cockwill, Deputy Chair of the VCCC Alliance Cancer Consumer Advisory Committee (CCAC), and Wamba Wamba woman Melissa Sheldon, consumer representative on our Health Equity Steering Group.

We asked Jo and Melissa for their reflections on the conference.

Inequity is everyone’s problem

Melissa was particularly pleased there was such a shift in focus towards Aboriginal and Torres Strait Islander health.

“As a collective we seem to be on the same path, understanding health equity is not the same as health equality.”

“My highlight was participating in the round table session with health professionals, Cancer Research, and policy makers in the COSA breakfast session: Understanding cancer survivorship for Aboriginal and Torres Strait Islander people.”

Effective and clear communication was also a major focus – it is a significant barrier to equitable care and trial participation for CALD communities, but it remains a problem at the point of care when health literacy assumptions are made.

“We heard an example of a patient who thought she was getting better because her doctors had told her she was ‘progressing’. This is horrifying.”

“Doctors must make sure patients understand what they are telling them,” Melissa said.

“The way health information and services are provided to us as patients can affect what we know and what we do about our health.”

Jo Cockwill said it was inspirational to hear and meet so many people who are so passionate about positive change in the equity space.

“There were so many messages about moving forward passionately repeated in presentations and discussion but none as outstanding as the importance of co-design,” she said.

“‘Inequity in cancer health outcomes is everyone’s problem.’ I love this quote.”

“It’s not someone else’s problem – you are playing a role in oppression whether you like it or not by either contributing to discrimination or challenging it.”

The key take-outs from COSA 2022

  • When it comes to delivery effective cancer care for Aboriginal and Torres Strait Islanders, one size does not fit all.
  • Lack of system ownership – “it’s somebody else’s problem” – and inflexible workforce KPIs only compound inequities.
  • Meaningful metrics based on real and relevant data, co-design of health systems and cultural competency of staff are essential to move forward.
  • Lack of appropriate research and data into fear of regression with Indigenous cancer survivors, which means no evidence.
  • Survivorship follow-up is not acted on due to worry about the impact on family, the disease returning, and a lack of trust in doctors and the system.
  • Lack of transparency and historic lack of collection in Indigenous data gathering means valuable measurement is very difficult, but we have to start somewhere.
  • Measurement of specific Indigenous priorities, targets and indicators needs to happen urgently, and systems should include an identifier.
  • “What gets measured gets done”, so without accurate data into Indigenous cancer outcomes, the gap will widen.
  • CALD populations experience higher anxiety due to lack of understanding and difficulty communicating with medical staff.
  • Different CALD groups experience different issues, but an overall lack of data, lack of participation in clinical trials and lack of CALD-specific consumer input means these populations have great difficulty navigating the system.
  • Delays in diagnosis, treatment and inability to participate in trials, as well as poor health literacy and low socioeconomic status, all increase the gap for CALD populations.
  • In issues of racism and discrimination, clinicians are terrified to “get it wrong”. Forget political correctness; when in doubt, reach out and ask the patient. Systemic change is needed urgently.
  • Māori people in New Zealand have a far higher likelihood of advanced disease on diagnosis and consequently poorer outcomes and higher mortality.
  • There is a stark lack of research into Māori and Pasifika populations in the literature, meaning gaps continue to be misunderstood and unaddressed.
  • LGBTQI+ patients represent an invisible diversity with huge gaps in the data, as many hide their identity out of fear of discrimination or poorer care.
  • Evidence shows that there is a lower satisfaction with care and a higher rate of stress among LGBTQI+ cancer patients.
  • Body dysphoria is a common feeling amongst LGBTQI+ people – this is exacerbated with some cancer surgery and treatments and there is a general lack of understanding of this.
  • Some LGBTQI+ patients experience heightened anxiety due to a lack of recognition of and consultation with their partner by healthcare workers.
  • Privilege is connected to power in our society, meaning the privileged can create and maintain social norms, often to their benefit at the expense of others.
  • Privilege doesn’t mean that a person hasn’t experienced struggles in their life.
  • Privilege is fluid and contextual, and has deliberately been set up as taboo, allowing those in dominant groups to ignore embedded, and often invisible, forms of oppression.
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