OBJECTIVES:

The NCPE initiated a review of the POSP in November 2017 to ensure a ‘fit for purpose’ patient engagement program is in place. One component of the review involved eliciting experiences and feedback from submitting patient organisations (POs).

METHODS:

A survey was developed using the online tool Survey Monkey™. A mixture of open and closed questions (n=16) addressed communications, timelines, ease of completion and areas for improvement. POs who had participated in the POSP between March 2016 and October 2017 were eligible for inclusion. Results were analysed in Microsoft Excel™.

RESULTS:

Surveys were sent to 12 POs of whom 6 (50%) responded. The majority of POs learned about the POSP and the specific drug assessment from a pharmaceutical company or other POs. The majority of POs (75%) considered 3 months sufficient time to submit the template. Deciding what information to collect, how to collect it, and communicating with the NCPE were identified as the most difficult aspects. POs used a variety of techniques and sources to gather information for the submission; 83% contacted the NCPE for assistance. When asked to rank suggestions for improving the process in order of preference, written guidance on completing the template (60%) and examples of completed templates (33%) were identified as the preferred options. While POs did not rate their overall experience highly on a scale of 1-100 (range 17-60), the majority (83%) stated that they would engage in the process again.

CONCLUSIONS:

The survey identified areas where refinements of the POSP are merited, including communication processes, and provision of guidance and support to POs. A large proportion of POs are willing to engage again with the POSP demonstrating the enthusiasm for HTA participation amongst POs. The NCPE is currently developing additional guidance around the POSP in response to the findings of the survey.