Have your say on the rights and roles of Australian cancer patients

The National Oncology Alliance (NOA), founded by Rare Cancers Australia, is developing a report that will provide recommendations to Cancer Australia, and the Federal and State Governments on how the rights and roles of cancer patients should be a reality in their lived experience and care.

We maintain that patient rights are fundamental to human rights, and this should be meaningfully embedded within our health system.

Through re-visiting and highlighting the rights patients believe they do or should have in an era of personalised approaches to diagnosis, treatment and management, we hope that the roles patients can play in their own health care journeys, and more broadly within the health system, will become evident.

As a result of the work NOA did last year through the creation of the Vision 20-30 report, Cancer Australia has made a commitment to develop an Australian Cancer Plan over the next two years - the first in our country’s history. NOA is taking this opportunity to provide recommendations that will enhance this plan based on patient interests and perspectives on their rights and roles - but we need your help.

We hope that the report stemming from our work, entitled “Realising the rights and roles of Australian cancer patients”, will help cement the voice of patients, as well as create opportunities for them to play a more prominent and influential role in shaping cancer care.

Have your say

To inform this report, and to ensure our approach is truly person-centred, we want to hear from as many Australian cancer patients and their carers as possible about:

• What you think the fundamental rights of cancer patients are? Or what you think they should be?

• Have these rights been a reality in your cancer journey? 
  • If yes, how? 
  • If not, why not and when in the journey was this apparent?
• In your opinion, who needs to do better?
• Do you feel empowered, informed and supported?
• Have there been times in your journey where the way you have been treated has been less than acceptable? 
• Have you had access to the treatments/technologies/clinical teams/support teams you need when you needed them?
• Have you had sufficient financial support to meet your needs during diagnosis and treatment?
• Is there anything that you think needs to change?
• What roles do you think patients can play in their own health care journeys?
• What roles do you think patients can or should play within the health care system?

Patients and carers answering from the patient's perspective are invited to respond.

Please use the questions as a guide to understand the type of information we are seeking. You may respond to as many or as few of the questions as you like.

Your perspectives can be written or provided via video. All views submitted will not be reproduced or shared without first seeking permission.

Please send your perspectives to PO Box 440, Bowral, 2576 or by email to noa@rarecancers.org.au by 30 June 2021.

Your answers to these questions will help inform and shape a body of work that will be shared broadly to raise the profile of patients' voices and their contribution to cancer health care in Australia.

For any questions, please email us at noa@rarecancer.org.au