About the Charter
EXECUTIVE SUMMARY

Introduction

This Charter represents a call to action from Irish patient organisations to the Irish Department of Health, the Health Service Executive (HSE) and the National Centre for Pharmacoeconomics (NCPE). It is an open invitation to these national agencies to explore how patients are currently involved in the process of assessing and reimbursing new medicines in Ireland, and how this can be improved.

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See which patient organisations have signed up to the charter

Over 35 irish-based patient organisations have signed up as signatories to this charter.  In addition, three international patient-led umbrella organisations have signed up as ‘friends of the charter’.  To see the list of organisations and their respective logos, click here.

The charter is divided into 6 major themes, which are highlighted below:

RIGHT TO APPEAL

Patients want a right to appeal Patients want to contribute to recommendation-shaping and decision-making. Patients should be invited to formally comment on draft assessment reports and reimbursement decisions prior to publication – thereby completing the in... Read More

EARLY ENGAGEMENT

Patients want early and sustained engagement across the process Patients in Ireland currently have limited patient involvement opportunities during the entire assessment and reimbursement process. Patients believe that there are missed opportunities and we cal... Read More

PATIENT & CLINICIAN EVIDENCE

Patients ask that patient + clinician evidence & input is systematically considered Patients have an in-depth knowledge of the impact of their condition and their treatment on their daily lives. Patients know the outcomes which are important and which can ... Read More

TRANSPARENCY & COMMUNICATION

Patients demand access to information and regular communication Patients need to be able to trust the decisions being made on their behalf. Patients denied access to a new medicine want to know that the assessors and decision-makers have arrived at their concl... Read More

EDUCATION & TRAINING

Patients need education, training and support to facilitate their involvement Patients are not scientists, economists or clinical experts, but they do have a unique and lived experience to share. Patients need education and training to ensure that their voice ... Read More

STRATEGIC COMMITMENT

Patients call for a strategic commitment to advance their involvement Patients are not an afterthought, patients are not another stakeholder, patients are not a box ticked. Patient involvement is an integral part of the work of national agencies engaged in the... Read More

Download a PDF of the charter

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