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.
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:
- Care I am confident in
- Care in my journey through healthcare
- Early Engagement
- Education & Training
- Jury Recommendation 1
- My Care Experiences
- Patient & Clinician Evidence
- Right to Appeal
- Strategic Commitment
- Transparency & Communication
RIGHT TO APPEAL
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 involvement circle from process start to finish. Patients should be able to challenge the process and we call for an appeal process to be developed to ensure an oversight framework is in place for final assessment and reimbursement decisions.
EARLY ENGAGEMENT
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 call for the patient voice to be represented across the entire process to ensure that the methodology employed and the values used are truly patient-centric. Patients can help with early scientific advice, assessment scoping, evidence development, early access and much more. Patient perspectives should inform the methodology employed and the values used by assessors and decision-makers.
PATIENT & CLINICIAN EVIDENCE
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 offer a real improvement in their quality of life. Collecting and incorporating “patient-based evidence” into assessments results in better decision-making. Clinicians also have important information to share, including ‘real-world’ observations about how patients respond to a medicine. We ask that patient and clinician evidence & input complement scientific and economic evidence.
TRANSPARENCY & COMMUNICATION
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 conclusions as a result of a transparent, accountable and evidence-based process. Patients want to have access to information; they want to know who makes decisions, how, and when. Patients want to be kept informed about developments and to be notified of the various opportunities to provide input and to become actively involved.
EDUCATION & TRAINING
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 is heard and represented. Patients need support to navigate the technical language and terminology, as well as to understand the methodology and measurements used. We ask that national agencies dedicate the resources needed to ensure that patients have the knowledge and the skills they need to interact with medicines assessment and reimbursement process.
STRATEGIC COMMITMENT
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 assessment and reimbursement of new medicines. Patients can be advisors, implementors, commentators. Whatever the role, we ask that our contribution is valued and that our added value is publicly recognised. We want the benefits of our involvement to be measured, and we hope that our partnership evolves as new opportunities arise.