OBJECTIVES: To explore the barriers/enablers to patient engagement in health technology assessments (HTA) in Ireland. Recently, there is an increased focus on patient involvement in HTAs. In 2016, the Irish National Centre for Pharmacoeconomics launched their patient organisation (PO) HTA submission template. POs in Ireland have also made calls to be more involved in all stages of reimbursement decision-making. However, little is known about the resources required for POs to contribute to HTAs, and whether resource capacity influences evidence submission rates/overall engagement in HTAs. This research explores POs current resource capacity, their ability to complete HTA evidence submissions, and elicits their opinions regarding the value placed on patient engagement by assessment bodies.

METHODS: A mixed method, cross-sectional survey of Irish POs (n=76) was conducted via an online questionnaire. Descriptive and summary statistics were employed to analyse quantitative data points. A detailed thematic analysis methodology was also implemented to analyse open-text questionnaire responses.

RESULTS: 86% of respondents have >100 members. The average annual reported PO budget was €777,083. 71% of POs were aware of the patient HTA submission template. 57% of respondents who had an opportunity to submit evidence, did not do so. 14% reported they were aware of an opportunity to submit but were unable due to time/resource constraints. All POs who contributed to HTAs stated it was time consuming and impacted their other responsibilities. 71% of POs thought it necessary to be provided with more detail on how reimbursement decisions are reached. Overall, POs felt their contributions to HTAs were under-valued.

CONCLUSIONS: This research shows that patient engagement in HTAs is relatively low, even for large, well-resourced POs. Engagement could be improved if POs were provided with further supports including increased training, better communication channels with assessment bodies, and increased transparency regarding how patient submissions are weighted in the overall HTA submission process.