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Image is a photo of all the attendees and organisers of the BMS Patient and Parliament Summit 2024 standing outside of Parliament House, Canberra on a sunny day. The building facade is curved and white with tall rectangular pillars. The metal-frame Austrailan Coat of Arms sits on the roofline of the building and the sky is visible through it.

Amplifying Patient Voices in Parliament

Amplifying Patient Voices in Parliament

We recently attended the Patient and Parliament Summit in Canberra and are excited to share our summary with you.

Published 21 December 2024

Image is a photo of all the attendees and organisers of the BMS Patient and Parliament Summit 2024 standing outside of Parliament House, Canberra on a sunny day. The building facade is curved and white with tall rectangular pillars. The metal-frame Austrailan Coat of Arms sits on the roofline of the building and the sky is visible through it.
The attendees and organisers of the BMS Patient Parliament Summit 2024 outside Parliament House, Canberra.

Rosemary Ainley (our Senior Editor and Advocacy Manager) and Annie McPherson (our guest patient representative) were pleased to have participated in the third annual Patient and Parliament Summit in Canberra, hosted by Bristol Myers Squibb Australia (BMS Australia).

The theme of the summit, ‘Partnering for Patients’, put a spotlight on the importance of early and continuous engagement of patient communities in shaping our healthcare systems. The value that patients can bring to health technology assessment (HTA) through engagement with policymakers, clinicians, industry and other health stakeholders was a key focus of the summit.

Health technology assessment is the process by which medicines, medical devices and medical services are assessed by the Australian Government before they are subsidised through the Pharmaceutical Benefits Scheme (PBS), Medicare or other Government programs.

The summit connected patients and over 25 patient organisations directly with parliamentarians, to share their lived experience and discuss strategies to embed the patient voice in healthcare planning and reform.

Shaping Healthcare Together Roundtable 2024

The BMS Australia Shaping Healthcare Together Roundtable is an annual event that brings together representatives from a cross-section of patient advocacy groups to discuss ways we can use our collective voices to improve our healthcare system at the highest levels.

The groups represented people with a range of chronic conditions including cancer, heart disease, lung disease and more. We were proud to represent our CreakyJoints Australia arthritis community and our GHLF Australia community, which supports people with related or lesser-known conditions such as psoriasis, osteoporosis and thyroid eye disease.

Image is a photo of a group of people sitting around several round white tables. They are looking at a presenter standing between a poduim and a large white screen with an image projected on it. The walls of the room are brown and the ceiling and curtains are white.
The BMS Shaping Healthcare Together Roundtable 2024 gets underway.

The welcome and introductions were conducted by senior members of the BMS Australia team, Owen Smith, Hayley Anderson and Rosie Yeo. Janelle Bowden, the Managing Director of AccessCR, gave us an overview of the major themes important to the engagement of the patient community in HTA.

Next, we were privileged to hear from Jo Watson, the Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC) and Chair of the Health Technology Assessment Consumer Consultative Committee. Ms Watson gave us an update on some of the reforms currently happening across the HTA bodies.

The roundtable members went on to consider when and how we can engage more effectively with the Australian Government and industry stakeholders in the HTA process. As this is a broad area, this roundtable focused on how the medicines access environment can be improved to best serve Australian patients.

Why the patient voice matters in health technology assessment

The PBAC is the government body responsible for deciding which medicines and medical products are made available for free, or at a substantial discount, through the PBS. They analyse the benefits of each proposed product plus the risks and costs associated with them to decide which products will have the most benefit for the most people.

The PBAC also takes community feedback on broader factors into account during this process. These factors might include:

  • Whether new medicines could improve people’s quality of life, including their ability to work or socialise.
  • The extent to which improved symptoms of a new medicine would also improve a person’s mental health.
  • Whether existing medicines are difficult for some people to access or use.
  • If there are no effective existing medicines, could a new one increase life expectancy?
  • What might happen to a person if they don’t get access to this medicine.

By looking beyond product data, the PBAC can make more holistic decisions about which medicines to subsidise. For example, even if a high-cost medicine only benefits a small group of people, knowing how big a difference access to that medicine would make to the quality of life of those people could influence the PBAC to subsidise that product through the PBS.

Patients can provide feedback to the PBAC by writing their own submissions or contributing comments to submissions written by patient organisations such as ours.

Healthcare reform

Our HTA system is outdated and needs urgent reform, with delays in accessing new medicines through the PBS having a profound impact on individual patients. The HTA Review Accelerating Access to the Best Medicines for Australians Now and into the Future, released in September 2024, made 50 recommendations for reform that will:

  • Address inequities in access.
  • Improve timely access to medicines.
  • Improve engagement.
  • Invest in HTA capability to make it adaptable and future-proof.

The HTA Review and other recent reviews were also a key focus of the Patient and Parliament Summit.

Patient meetings with MPs

The second day of the summit was held at Parliament House in Canberra. In the morning, most of our guests had the opportunity to meet with their local Member of Parliament (MP). Each used this time to share their lived experiences with their MP to highlight the importance of the patient voice across the health system and demonstrate that patients are their own best advocates.

Image shows two photos. On the left is a photo of Annie McPherson. She is wearing a sleeveless pastel pink summer dress and holding a white cardboard frame in front of her. The frame has a square cut-out so her head and shoulders are visible through it. The text on the frame reads, "Patient & Parliament Summit. #Partneringforpatients Proudly supported by Bristol Myers Squibb". Their are tiered rows of seats behind Annie. On the right is a photo of a room full of people sitting around rectangular white tables. Many of the people are engaged in one-on-one meetings around the tables. The walls of the room are white with some areas clad with a light timber with a vertical grain.
L to R: Annie McPherson at the Patient and MP meetings, Parliament House, Canberra; Patient and MP meetings taking place, Parliament House, Canberra.

Our summit guest, Annie McPherson shared her views on this topic.

“It’s so important that people living with chronic conditions are heard. The lessons learned from their lived experiences and perspectives can be integrated into the patient’s journey in health services as well as enhance policies, treatment development and research.”

Patient Showcase

The Patient Showcase held in the afternoon was a highlight of the summit. Each organisation had a stand where we displayed our promotional literature and had the opportunity to talk to the Showcase guests about the work we do to help people with chronic conditions.

The event was supported by several parliamentary friendship groups and Parliamentary Friends of Medicine co-chairs, Dr Mike Freelander MP and the Hon Dr David Gillespie MP both gave supportive speeches.

Joint Australian of the Year, Prof Richard Scolyer AO gave an engaging keynote speech, sharing his experiences as a leading melanoma researcher and as a patient undergoing game-changing brain cancer treatment.

We were all encouraged to hear the Hon Mark Butler MP, Minister for Health and Aged Care, address the Showcase and announce the formation of an Implementation Advisory Group to develop a roadmap for sequencing the government’s response to the HTA Review recommendations.

Overall, the 2024 BMS Patient and Parliament Summit was a huge success. We look forward to contributing to the HTA reform process in any way we can and to joining our fellow patient organisations at the 2025 Summit.

Image includes three photos aligned horizontally. On the left is a photo of the Joint Australian of the Year, Prof Richard Scolyer AO, standing at a podium and giving a speech. He is wearing a suit, white shirt and tie. There are BMS Patient and Parliament Summit 2024 banners behind him and flowers on either side of the podium. In the centre is a photo of Rosemary Ainley (left) and Annie McPherson. They are standing in front of a tall GHLF Australia banner. They are on the lawn with some trees behind them in a courtyard of Parliament House, Canberra. They are wearing summer clothing and have big smiles on their faces. On the right is a photo of Rosemary Ainley (right) meeting Prof Richard Scolyer AO and his wife Katie Nicoll. They are standing under a tree in a courtyard of Parliament House, Canberra on a sunny afternoon.
L to R: Prof Richard Scolyer AO presenting at the Patient Showcase, Parliament House, Canberra; Rosemary Ainley (L) and Annie McPherson proudly representing GHLF Australia at the Patient Showcase, Parliament House, Canberra; Rosemary Ainley (R) meeting Prof Richard Scolyer AO and his wife Katie Nicoll at the Patient Showcase, Parliament House, Canberra.

Help us make a difference

Learn more about the PBAC process and how you can make a difference in the advocacy section of our Thyroid Eye Disease Education and Advocacy Hub.

“It is the lived experience stories like ours that help organisations gain a much better understanding of the people and community they want to help. Becoming a health consumer advocate is one of the most rewarding and empowering things I have ever done.” — Annie McPherson

See our previous PBAC submissions and discover how GHLF Australia advocates for Australian patients more broadly on the Advocacy page of our website.

You can also contribute to our advocacy efforts by responding to one of our surveys or becoming a GHLF Australia member.

Become a GHLF Australia member

You’ll receive our exclusive newsletter full of facts and tips to help you live well with chronic illness and make informed decisions about vaccinations. We’ll also send you updates on our activities, events and advocacy opportunities. For more information, see our Join us page.

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