Patient advocacy leaders unveil key takeaways from HTAi congress

Pharma News: The HTAi congress in Seville convened global stakeholders in health technology assessment (HTA) to explore the future of HTA worldwide under the theme “A Turning Point for HTA?”. Yesterday, the Patient Voice Initiative (PVI) hosted a session, delving into key insights shared by patient advocacy leaders.

Leading the conversation was Ann Single, Vice President of HTAi, alongside a panel including Jessica Bean, Chair of PVI; Kris Pierce, Founder of SCN2A Australia and Co-Founder of Genetic Epilepsy Team Australia; Melanie Funk, Managing Director of Eczema Support Australia; and Karen van Gorp, Board Director and Deputy Chair of Melanoma Patients Australia and Chair of Cancer Voices SA.

Melanie Funk highlighted the critical role of patient involvement in HTA, stating, “Meaningful involvement takes time, money and resources, particularly the one resource that is finite and scarce within our very busy patient organisations – energy from the individuals involved. So if we are spending our scarce resources on HTA, it does mean that we might not be putting in as much effort that we want to be putting in other areas of support. We need to be clear that when we do work on anything with HTA, that it is having a measurable impact.”

Kris Pierce addressed the complexities faced by patient organisations in the HTA process, explaining, “There are challenges in the authentic, transparent involvement of consumers in the HTA process. A session survey saw 80% of attendees vote for patient organisations being responsible for the collection of patient preferences for HTA. While that is an important recognition of patient engagement, the burden of the work and funding requirements was swiftly turned back on patient organisations with minimal resources.”

Karen van Gorp emphasised the importance of early patient involvement in HTA, saying, “The need to involve patient views in early HTA is essential. There were great discussions on the need to measure patient needs, collect information, and store it.”

She also noted the lack of serious consideration regarding funding for data collection on patient preferences, sharing, “However, when I asked the question about who was going to fund the data collection on patient preferences I was told ‘you could get a grant and then invite us to do the work for you’. It is obviously something that has not actually been seriously contemplated.”

Jessica Bean spoke about the challenges of patient representation in HTA, stating, “We’ve all felt a little bit of an impostor syndrome when we’ve been invited to the room but we don’t really feel like we’re being given a microphone.

“Bringing more patients to HTAi means that we feel safe to share our true experiences of patient involvement. By doing that we’re not just benefiting the patient community, we’re also giving all stakeholder groups a better understanding of what it is to involve patients, what we need, and how to meet those needs.”

Reflecting on the broader implications, Ms Pierce noted, “There is a disconnect between the HTA work being done and the connection back to the pharma and biotech companies. There are opportunities to connect that better through the research that backs the processes, frameworks and best practice.”

The panel discussion underscored the necessity of consumer involvement in HTA, highlighting the need for better resources and funding to ensure that patient voices are not just heard but integrated and embedded into the HTA processes.

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