This week representatives from OIFE attended two different online sessions connected to the Patient Engagement Open Forum, which is a series of virtual educational sessions on patient engagement. The Forum is hosted by PARADIGM, PFMD and EUPATI aims to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work.

Anyone can join

There will be six other sessions from July to November in 2020 and anyone who’s interested in patient engagement can attend.

Topics range from tools and recommendations for effective patient engagement, methods for monitoring and evaluation of impact and outcomes in patient engagement activities, and fair market compensation for patient input to interactive sessions on assessing good practices in patient engagement and more. This includes both patient representatives, professionals and industry representatives.

Session on patient experience in regulatory processes

OIFE president Ingunn attended the opening session on June 25th including the parallel session on patient experience data in regulatory processes where the objectives were:

  • Learn more about ongoing patient engagement efforts to inform regulatory decision making
  • Explore challenges and emerging good practices around the use of patient experience data in regulatory submissions
  • Prioritize Patient Experience Data (PED) challenges and emerging good practices in regulatory communication
  • Understand what areas can help move the needle internally for organizations and externally in collaboration with patient organizations, biopharma and regulators

Session on fair market value

On June 26th two representatives from OIFE attended the parallel session hosted by the National Health Council in the USA called “Patient engagement fair-market value calculator toolbox”. The toolbox provides different tools for patient engagement including a calculator, which can be used to estimate the value of the contributions from patient representatives and patient organizations when working with the industry. One of the tools the National Health Council has created is a toolbox to support sponsor-patient engagement. These tools include a publicly accessible, online fair-market value calculator, patient-friendly contract templates, compensation and contracting principles for engaging with patients, and other tools. The OI Foundation are members of the NHC and Tracy Hart (CEO of OIF) has been part of the development process of the toolbox.


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