Aim: Deliver a whitepaper detailing the pre-requisites and stakeholder expectations for a patient insights research platform (PIRP) as a structured, but purely observatory approach for collecting and analysing patient-based communication content from social media to inform HTA bodies on patient needs and experiences.
Project sub-committee leads: Anke-Peggy Holtorf (Health Outcomes Strategies GmbH), Andrii Danyliv (Novartis)
Aim: Gain a better understanding of patient participation in the organizational domain; identifying how, and on what topics, dialogue between patients/ patient groups/ citizens and HTA bodies is occurring and what facilitates it
Project sub-committee lead(s): Hervé Nabarette (AFM-Téléthon)
Aim: Aid reflection on the impact and mechanisms of patient involvement by trialling the use of a template to capture different stakeholders’ stories/experiences.
Project sub-committee lead(s): Aline Silveira Silva & Veronica Lopez Gousset (VLG Consulting)
Aim: Support providing patient groups with plain language information about medicines under assessment with a standardized template, completed by industry, and guidance for creating summary information (for local adaptation)
Project sub-committee lead(s): Susan Vallow (Novartis) & Heidi Livingstone (NICE)
Aim: Explore the current routes of patient involvement in LMICs. Collaborate with LMIC stakeholders to define LMIC-specific needs for patient involvement. Develop and adapt guidance and tools to support patient and citizen involvement in HTA in emerging economies.
Project sub-committee leads: Anke-Peggy Holtorf (Health Outcomes Strategies GmbH) and Jani Mueller (CMeRC)
Aim: Develop tools and resources to support HTA bodies involving patients in Early Dialogue/Scientific Advice for Work Package 4.
Project sub-committee lead(s): Neil Bertelsen (Neil Bertelsen Consulting)