The National Centre for Pharmacoeconomics (NCPE) has a Patient Organisation Submission Process (POSP) enabling patients to communicate their experiences to the drug-reimbursement decision-maker. The NCPE proactively invites and supports patient organizations to make submissions to the decision-maker for ongoing health technology assessments (HTAs). We evaluate uptake of the POSP and determine whether submission trends differ by drug type.

We reviewed all HTAs completed by the NCPE since 2016 (when the POSP was first introduced) to present (data cut-off date 22 November 2023). Time trends in the proportions of HTAs for which a patient organization submission had been made to the NCPE were analyzed descriptively. We also compared the proportions of HTAs for which a patient organization submission had been made for (i) orphan versus non-orphan drugs and (ii) oncology versus non-oncology drugs.

The number of patient organization submissions made to the NCPE has increased over time. In 2016, 24 percent (6/25) of completed HTAs were associated with a patient organization submission compared with 50 percent (11/22) in 2023. The proportions of completed HTAs associated with a patient organization submission are comparable between orphan (38%; 24/64) and non-orphan drugs (29%; 34/117) (Chi²; p=0.245). The proportion of completed HTAs for which a patient organization submission had been made was lower for oncology drugs (14%; 14/97) versus non-oncology drugs (52%; 44/84) (Chi²; p<0.001).

Patient organization submissions to the NCPE have increased over time. The proportions of HTAs for which patient organization submissions have been made are comparable between orphan and non-orphan drugs. However, the proportion of patient organization submissions for oncology drugs is lower than the proportion for non-oncology drugs. The NCPE will continue to liaise with patient organizations to increase engagement with the POSP.