“ Don’t just make a noise. Tell the committee why it will make a difference. Be specific.
Committees like PBAC can use patient knowledge to make more informed recommendations. ”
– Jo Watson, PBAC Deputy Chair and Consumer Representative
Why is your voice important?
When governments make decisions about investing in healthcare and new treatments, they take into account the cost. However, decisions are not made based on price alone. Instead, they try to maximise the benefit to the community by choosing treatments that are good value. Evidence from clinical trials and economic models provides information about the value of a treatment.
weighing up outcomes
Good value means different things to different people. For example, a researcher may value an outcome of treatment differently to a doctor who in turn, may value it differently to you. This is why decision-makers need your input when they are considering investing in a new treatment or changing the way treatment is provided.
make better decisions
Decision-makers need to know what matters most to patients and carers like you and learn from your insights about how and when a treatment may best be used. They want to know if treatments have value beyond clinical trials and if they will make a difference to patients’ daily lives. Patient and carer input can help them understand the true value of a treatment and make better decisions.
Your voice may make a difference
HEALTHCARE DECISIONS INCLUDE:
What medicines are made available for free or at a reduced price through the Pharmaceutical Benefits Scheme (PBS)?
What prostheses private health insurers must pay benefits for under the private health insurance rules?
The committees that help the Australian Government make these decisions rely on evidence and expertise to make sense of the evidence. Experts include health professionals, researchers and people like you who live with a condition or disease or care for someone who does.
Sometimes health consumers and their carers are called ‘lived experience experts’ because they know the day to day reality of living with a disease, having treatment (or not), and what matters most.
“ It is crucial to hear our voice because we carry a unique perspective as real people with real lives that matter. We are only one piece of the puzzle, but we help to complete a complex picture. Without our voice, decisions are being made that do not totally reflect what is important to those of us it affects… Our voice can help guide key decisions & provide insights that are not otherwise possible. ”
– Lisa Briggs, lung cancer patient advocate