News & Trends - Pharmaceuticals
Patient Voice Initiative and Medicines Australia reveal key insights from HTA Review

Pharma News: Experts gathered to discuss the progress of the Health Technology Assessment (HTA) Review at an intriguing session during the ARCS Australia conference yesterday. The session featured Elizabeth de Somer, CEO of Medicines Australia, and Ann Single, Coordinator of the Patient Voice Initiative and Chair of the Health Technology Assessment international (HTAi) Patient and Citizen Involvement Interest Group (PCIG), and was chaired by Katrina Lapham, Director of Strategic Market Access and Policy at Biointelect.
Ms Single stressed the importance of addressing central issues in HTA, particularly the time taken to access treatments and the causes of delays. She expressed a strong interest in accelerating access to certain treatments and urged for transparency in the system, stating that patient communities should be involved in the reform process. “Partnership with patient communities is a critical part of reform because traditional evidence often lacks crucial knowledge,” Ms Single highlighted, emphasising the need to bridge the gap and ensure equity in the HTA system.

Ms de Somer underscored the significance of the HTA review, explaining “Consumers want to be involved in the decisions about them. One of the phrases that Richard Vines from Rare Cancers Australia uses is ‘Nothing about us, without us’. The community today is far more informed about choices, and what choices they want to make for their own healthcare.”
Health Industry Hub raised an important question regarding measuring the impact of the patient voice during the HTA process. Ms Single responded by emphasising the significance of transparent documentation.
“I believe the critical point is that stakeholders can see how patient input is considered in the HTA process,” Ms Single explained. “Measuring impact is an ongoing discussion, but transparency is crucial. Patient narratives and outcomes should be at the forefront of reform.”
The panel also discussed the challenges of changing the discussion from cost containment to a broader understanding of the economic contribution and societal benefits of access to innovative treatments. Ms de Somer highlighted the need to shift the focus from pricing negotiations to patient-centric decision-making. “Patients shouldn’t have to wait while the industry and the government argue about the price of life-saving treatments. Let’s prioritise patient access and discuss pricing separately,” she argued.
The discussion also touched on the need for better engagement between industry and patients. Ms de Somer stressed the importance of actively involving patients throughout the process, from regulatory submissions to clinical trials, to ensure a better understanding of patients’ needs and values.
Furthermore, the panel highlighted the lack of public awareness and understanding of the HTA process in Australia. Ms de Somer emphasised the need for greater community awareness, citing a personal example involving her parents in the UK where the National Institute for Health and Care Excellence (NICE) and its evaluations are more widely understood and recognised by consumers.
“Community understanding of HTA is still lacking in Australia. We need to bridge the gap and educate the public about the decision-making process and the availability of treatments,” she explained.
The conversation turned to the key opportunities related to diversity, inclusion, and equity in the HTA review. Ms Single responded, saying, “Equitable access is one of the key objectives, and we try very hard to describe the areas where we thought inequity was most likely to exist. But we also hope that the consultation survey questions will bring awareness to inequity that may not have been captured. There’s a great opportunity to involve the community and collaborate with HTA experts to address this issue.”
Recognising the importance of patient voices for the diverse communities, Ms Somer noted, “We rely on organisations like Patient Voice Initiative, Consumer Health Forum and Humanise Health to be the voice for those who cannot actively engage. We must ensure that even the quiet ones are heard. Creating a community that understands the healthcare system will enable individuals to support advocacy efforts.”
The discussion then shifted to the broader view of value within the Pharmaceutical Benefits Advisory Committee (PBAC). Ms Single stated, “Value in health technology assessment can be perceived in three ways: societal values reflected in guidance, inherent values in pathways and processes, and the values incorporated after deliberation or within the evidence. Patient communities play a crucial role in understanding and shaping these values.”
Expanding on the topic of value, Ms de Somer expressed, “Patient impacts that are not adequately captured in clinical evidence should be taken into account. It should be transparent, universal, and predictable. Patients deserve to know upfront when and how these will be valued.”
The panellists further discussed the potential for international work sharing arrangements to establish progressive evidence requirements and standards. They highlighted the benefits of sharing resources and resolving common challenges but emphasised the need for caution to maintain sovereign decision-making in a diverse global landscape.
Ms de Somer shared her aspirational goal, stating, “As soon as medicines are approved by the TGA, they should be made accessible to patients in a funded capacity. We want this industry to thrive so it will encourage companies and new medicines to come into Australia first and early. We want Australia to be a first launch country – it’s slipping down the launch pad. We need to make sure that Australian patients are not waiting for every other jurisdiction to have worked out what they’re going to provide and fund before it even comes to Australia.”
When addressing the question of quick wins in the HTA review, Ms de Somer cautioned against focusing solely on easy tasks. She said “The Health Minister is willing to take it on, and he knows that it’s going to take time to achieve change. We work in an industry where real innovation takes a long time. Let’s stay the course and keep working towards change that makes a difference to people’s lives.”
Concluding the panel, Ms Single highlighted the willingness of patient communities to participate in reforms. She said “Our patient communities have never been so ready to take part in the HTA reform – with good knowledge, good experience, and good ideas about how we do that.”
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