Patient voices in HTA: Rising interest meets persistent barriers

Pharma News: Interest in incorporating patient voices and lived experiences into health technology assessment (HTA) and informing payer decisions has surged. Despite this growing interest, information about the current impact of such data in HTA is limited.

A study conducted by the HTA International Patient and Citizen Involvement Interest Group involved forty members of HTA bodies and affiliated organisations from twelve countries, including Australia. The survey aimed to understand the role and integration of patient preference data in HTA processes.

According to the survey, 82.5% of respondents reported that patient preference data were formally considered as part of the HTA evidence review process. However, barriers to the broader and more meaningful integration of this data were evident, particularly regarding its weight and impact on final HTA recommendations for therapy funding.

“Although patient preference data enhance the quality of the committee’s discussion, it rarely has a direct influence on the decision (weight is still placed on published evidence from studies of effectiveness and safety),” said a member of an HTA body who participated in the survey.

Another respondent noted that the value of patient preference data “varies wildly according to each individual appraisal,” highlighting inconsistencies and the lack of meaningful integration.

In Australia, the Pharmaceutical Benefits Advisory Committee (PBAC) recommends methods such as Discrete Choice Experiments (DCEs) in their guidelines to capture utility weights and non-health benefits of medicines. While patient preference data are not systematically incorporated into the Australian HTA process, there have been instances where such data supported PBAC’s recommendations for new therapies. Additionally, other Australian HTA bodies, including the Medical Services Advisory Committee, have pushed for generating patient preference data in specific areas, such as genomic testing. A national co-designed preference project is currently underway to address this need for evidence.

Participants reported several barriers to submitting patient preference data in most assessments/appraisals. Alongside a lack of guidelines, time, resource, and cost constraints were the most frequently cited obstacles. Additionally, a lack of expertise and unclear impact of patient preference data were highlighted as significant challenges.

The survey revealed that patient preference data only have a moderate level of influence on the deliberative process and decision outcomes in their organisations. Consequently, guidance to increase the usefulness and impact of patient preference studies in decision-making is crucial. Most respondents believe these barriers can be overcome within the next 2–3 years in their organisations.

The study also highlighted a potential mismatch between resources and responsibilities. While 82% of participants believed that patient advocacy groups should be responsible for generating and submitting patient preference data to HTA, these organisations are typically the most resource-strained. Survey participants acknowledged that patient preference data require considerable costs and resources.

Recently, frameworks for patient preference information have been developed, including those from the Medical Device Innovation Consortium and the Innovative Medicines Initiative-PREFER project. Several HTA agencies have also begun including evidence from such studies in their guidelines.

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