Dáil Éireann Debate, Thursday - 10 February 2022
391. Deputy Colm Burke asked the Minister for Health if he has made an assessment of the impact of the Patient Organisation Submission Process in the National Centre for Pharmacoeconomics in achieving its aims of improving patient involvement in the health technology appraisal process; and if he will make a statement on the matter. [7127/22]
View answerThe National Centre for Pharmacoeconomics (NCPE) are committed to transparency in their work and to clear communication to all stakeholders. They have provided a submission process for Patient Organisations since 2016 and undertook a major review of the process in 2018. This review included a public consultation with Patient Organisations.
The Patient Organisation Submission of Evidence Template is a document that enables patient organisations to provide patient and carer input to the assessment of a particular medicine. The purpose of the submission is to identify important aspects of the medicine that are:
- not identified or well presented in the published literature; or
- not well captured in quality-of-life measures or other outcome measures that have been used in clinical trials and other research studies; or
- not well known and/or understood by experts in HTA and decision makers.
The submission is also an opportunity to identify the priorities and preferences of patients and what the added value of a particular medicine may be to them. This information is then used as part of the HTA of the medicine.
Since the current Patient Organisation Submission Process was launched in 2018, the proportion of HTAs for orphan drugs where patient organisation submissions were received has increased every year. The NCPE advise that it currently has seven ongoing HTAs for drug treatments for rare diseases/orphan indications. A patient organisation submission has been submitted or is planned for all seven of these HTAs.
To support this process, the NCPE deliver a 10-week long patient education module annually, in conjunction with the Irish Platform for Patients' Organisations, Science & Industry (IPPOSI), entitled “Understanding the Principles and Practices of Health Technology Assessment”. This aims to equip patients and their representatives with the background information and knowledge to actively participate in HTA decision making processes in Ireland.
The NCPE also provide ongoing support to patients and organisations throughout the submission process, particularly focusing on smaller or less experienced organisations with fewer resources available to facilitate participation in the process.
The NCPE have also created a dedicated section on their website for patients, which includes information on the submission process, the drug reimbursement process and how to interpret NCPE recommendations. Updates on the NCPE website in respect of all steps in the HTA process are provided in real time from the date the rapid review is commissioned.
In 2019, the NCPE also engaged the National Adult Literacy Agency (NALA) to co-design Plain English summaries of full HTA reports, which detail the recommendation and next steps in the reimbursement process.
