OBJECTIVES: Within health technology assessment (HTA) appraisal, the voice of the patient provides an opportunity to offer unique insights into the patient experience, unmet need, and advocacy for access to novel therapies. Inclusion of the patient perspective in HTA appraisal reflects the ethical principles of respect for autonomy and justice, ensuring that the interests and rights of patients are considered in the decision-making process. In Ireland, the National Centre for Pharmacoeconomics (NCPE) calls for submissions from patient organisation (PO) groups following a full HTA submission from an applicant. This research aims to identify the number and trends of PO submissions submitted to the NCPE.

METHODS: HTA assessments completed between 2021 and 2024 were compiled into a database and technical summary reports reviewed. Descriptive statistics were used to quantify the number of PO submissions received overall, within oncology-specific, non-oncology, and rare disease indications.

RESULTS: Of 84 HTA submissions with completed NCPE assessment reports, 44% (n=37) contained a PO submission, and 56% (n=47) were without. The number of PO submissions in 2021 was 12 followed by a drop in 2022 to 9. PO submissions increased to 13 in 2023, with 3 submitted in 2024 to date (May 2024). Of all PO submission received, 30%, 35% and 35% were for oncology, non-oncology and rare diseases indications, respectively.

CONCLUSIONS: The results show a numerically increasing trend in PO submissions to the NCPE since 2019. This highlights the growing involvement of patient advocacy groups participating in the HTA process. Additional analysis will focus on examining the trend prior to and after 2018 following the NCPE public consultation and implementation of strategies to refine the PO submission process using a linear regression model. Moreover, more detailed analysis within each indication group will be explored to understand if these influence the number of PO submissions submitted.