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Alicia-Sophie Koetter

Facilitating Patient Involvement in a Working Group

My interest in effective knowledge translation on human medicines led me to explore patient involvement in regulatory processes. Despite user testing efforts, understanding and finding relevant information on human medicines remains challenging. This prompted me to investigate the responsibility of regulatory authorities in approving human medicines, ultimately focusing on patient involvement within a diverse working group of patient representatives.

This group comprises patient representatives advocating for individuals with severe or rare diseases such as cancer, visual impairments, and sexually transmitted diseases. Each member brings unique motivations and experiences to the table, enriching the collective perspective.

To address challenges in these processes, the project introduces the Flourish Toolkit, designed to enhance clarity and enable effective management of the working group, fostering a space for learning from and with each other. The Flourish Toolkit combines a model that visually establishes common ground and clarity within the diverse working group. Alongside this model, a facilitator’s guide offers activities aimed at clarifying roles, responsibilities, and the impact of patient involvement within the working group context.

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