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)

PIRP Summary
PCIG-Bulletin

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)

Project Proposal 

Project Summary Presentation 

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)

Project Proposal 

Project Summary Presentation 

Patient Involvement Impact Perspectives template

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)

Summary of Information for Patients: International Template

Project Proposal

Project Summary Presentation 

Implementation and Adoption: Guidance for HTA bodies

Guidance for Industry

Guidance for Patient Organizations

Presentation for Patient Organizations

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)

Project Proposal 

Project Summary Presentation 

Aim: Share good practice and practical advice to foster the use of patient preferences research in HTA

Project sub-committee leads: Eric Low (Eric Low Consulting) and Simon Fifer (CaPPRe)

Project Proposal 

Project Summary Presentation 

PGIC Webinar Series – Session Recordings

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)

Project Summary Presentation

October 2018 Workshop Report

PARADIGM Project Deliverables