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Irish Platform for Patient Organisations, Science & Industry

IPPOSI

The goal of our organisation is to ensure that the voice of individuals with chronic and/or rare conditions is heard across the health innovation sector.

Lobbying Activity

Response to Health technology assessment - Joint clinical assessments of medicinal products

2 Apr 2024

As IPPOSI, we welcome the opportunity to provide feedback on the EU consultation regarding Joint Clinical Assessments (JCA) for health technology. Our response underscores the crucial role of patient involvement and transparency in decision-making processes. We emphasize several key points: Firstly, we highlight concerns regarding the selection process for patient representatives and stakeholders in JCAs. We advocate for clear, public criteria for selection, ensuring equal involvement of national and pan-European organizations. An open call for expressions of interest would facilitate a more inclusive and transparent process. Secondly, we stress the importance of transparency in evaluating potential conflicts of interest among patient representatives, with outcomes communicated publicly to maintain trust. Thirdly, we recommend public notification of upcoming JCAs and standardized templates for Member States to engage their national patient communities in scoping exercises. Involving patient representatives in scoping meetings and in early stages of the assessment is vital for ensuring the process is inclusive and representative. Furthermore, we propose the creation of lay summaries of JCA assessments to facilitate broader patient engagement and feedback. It is essential to involve the patient community in drafting these summaries to ensure they are understandable and relevant. We emphasize the need for capacity building within the patient community to effectively engage in the JCA process. Compiling annual reports on patient involvement in JCAs will help identify best practices and areas for improvement. Lastly, a Patient Advisory Panel may be a useful tool to establish to advise on many of the issues raised above, as well as to provide guidance on the general embedding of this new approach to assessment. The JCA process needs to grow trust and confidence among stakeholders and the public. The key to building support for this new approach to assessment within Member States is through partnership working with the patient community.
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