OBJECTIVES

The NCPE publish technical summary reports of all the HTAs conducted as part of the drug reimbursement process in Ireland. The need for clear communication with patients was identified through public consultation on the NCPE Patient Organisation Submission Process. A Public Summary (PS) document, written in plain English and designed to accompany the technical summary report, was proposed to meet this need.

METHODS

An iterative qualitative approach was taken to developing the PS. Expert advice and editorial input from the National Adult Literacy Agency (NALA) was engaged. NALA provide plain English editing, training and writing services in Ireland. A one-day in-house training course in the principles of plain English was undertaken. Key information required in the PS was identified through internal NCPE consultation, NALA review and patient involvement (PI). PI was operationalised through an online moderated forum, with survey questions based on a technical summary report and a draft version of the proposed PS.

RESULTS

Idebenone for Leber’s Optic Neuropathy was selected as the case study. Key information identified for a PS included (a) a description of the NCPE role, (b), the information considered by NCPE when making HTA recommendations, (c) the recommendation itself, (d) the reasoning for the recommendation, and (e) next steps in the decision making process. A plain English description of the drug indication and the disease was provided. Plain English descriptions of the standard NCPE HTA recommendations were developed with NALA. The proposed text was reviewed and edited by NALA, and the idebenone PS was awarded a NALA Plain English Mark. Based on the idebenone PS, a template for future HTAs was created.

CONCLUSIONS

Patient Organisations consider clear communication from HTA agencies essential. The use of Plain English summaries, developed in conjunction with literacy experts and patients can improve understanding of HTA methods and outcomes.