hearts4heart CEO Tanya Hall knows heart disease better than most in Australia’s healthcare space, she was born with it.
Having worked across multiple charities in her professional life, Tanya saw help that was available for those who suffer from other illnesses such as cancer, but she felt support for Australians living with heart disease needed to be strengthened.
“I was born with heart disease and have lived with heart disease all of my life,” Ms Hall said.
“However, when I was going through a particularly difficult time, I felt isolated and wanted to connect with others going through a similar experience, but soon realised that there wasn’t anything available.”
“I wanted to be involved in the shared decision-making of my own health, but there was limited information that I could draw upon.”
Cardiovascular disease (CVD), the umbrella term that includes heart and blood vessel diseases, is one of the world’s biggest health challenges, with 1 in 6 people in Australia self-reporting as living with CVD.
Tanya was surprised by how many people were going through this challenge alongside her.
“I had asked ambulance drivers, cardiac nurses and cardiologists if there were many people like me going through a similar thing. I was shocked that given the prevalence of arrhythmias and of other heart conditions, that there wasn’t anything available. So, I thought to start something myself.”
What originally started as a website to connect people with cardiac heart issues quickly grew into one of the most well-known patient advocacy groups in the cardiovascular space, facilitating national awareness weeks, as well as providing peer support and education to patients.
Importantly, Ms Hall also states hearts4heart is the only cardiac consumer organisation involved in health policy.
“Patient-led advocacy is vital for driving meaningful change in healthcare. It brings the lived experiences of patients to the forefront, humanising healthcare issues and influencing policy, research, and practice in ways that truly address patient needs,” Ms Hall said.
“By empowering patients to participate in shared decision-making and holding institutions accountable, patient-led advocacy ensures that reforms are both practical and patient-centred.”
“This advocacy also shapes research agendas and raises public awareness, leading to innovations and improvements that enhance the quality of care and equity across the healthcare system.”
Patient advocacy has a proven track record of playing vital roles in fighting for funding from government. Individuals acting as a group are able to push towards a unified goal.
The patient advocate role is to highlight the impact for patients without having a commercial agenda.
These collaborations can accelerate research, bring innovative solutions to market, and ensure that patient needs are met with the latest treatments.
But as a patient advocacy CEO, Ms Hall strongly believes that there is a fundamental need to maintain transparency and align goals to ensure that patient interests and outcomes remain the top priority.
“Ultimately, working together with industry can create a more compelling, evidence-based case for change, leading to more effective and sustainable improvements in healthcare. We cannot initiate change on our own and need better collaboration between stakeholders.”
In discussing the importance of patient advocacy, Ms Hall was clear in her advice to industry: ignore patient groups at your own peril.
“Treating patient organisations as an afterthought poses significant risks for industry and peak organisations,” said Hall. “It undermines credibility and trust, as the public may perceive them as out of touch with patient needs.”
“This approach also leads to missed insights, resulting in ineffective solutions that fail to address real-world issues that patients experience. Excluding patient voices weakens advocacy efforts, reduces policy influence, and can spark negative public perception.”
“Ultimately, sidelining patient organisations jeopardizes the success and impact of healthcare initiatives, making it crucial to involve them from the outset. A unified voice is essential to make change.”
The next few months will involve a lot of advocacy for hearts4heart, with a Protheses List Review underway examining funding pathways for cardiac services, as well as the push to extend MBS funding for Heart Health Checks for a further two years.
In light of these two big fights, Hall is as focused as ever.
“In 2023, the Federal Health Minister extended the Medicare Heart Health Checks by a further two years. However, without a permanent solution, this poses a significant risk to people living with heart disease.”
“The Department of Health has now opened public consultation, and without action, these items are set to expire again on June 30, 2025.”
“It is essential that the MBS Heart Health Check is extended to allow the eight million at-risk people to receive the intervention and support needed to prevent fatal and non-fatal cardiovascular events.”
More information on Tanya Hall and hearts4heart can be found at hearts4heart.org.au/
London Agency provides a range of services to support patient advocacy groups. For more information on how we can support your advocacy, click here.
