IAPO to take over the Patient Research Exchange Program

Wednesday, 29 March 2017

IAPO will take on the management of the Patient Research Exchange (PRE) platform from Novartis. This is in effort to allow IAPO member organizations to fully engage with the pharmaceutical industry through research and ‘be the change they wish to see in the pharmaceutical world!’

The Patient Research Exchange is a resource that facilitates communication among patients, patient advocates, patient organizations, and all other relevant stakeholders about patient empowerment in research that will result in:

  • Better understanding of opportunities for patient engagement in research
  • Closer collaboration between patient advocacy leaders across all diseases around the world
  • Appropriate alignment and optimal positioning of patients in research
  • Increased effectiveness of patient engagement through shared learning based on practical experiences
  • Identification for all stakeholders of opportunities for patient collaboration in research

It was founded by a group of patient advocates from patient organizations across a broad range of conditions and geographic regions to foster mutual learning and collaboration.

This is in line with the fact that international pharmaceutical industries have now woken up to the reality that innovative consumer product manufacturers are pursuing a strategy to tailor their products to fit with the life-styles of their customers. They have started bringing patients into the heart of their drug design and clinical trials programmes.  Slowly, the old attitude that finds the molecule first and then fits it to  a patient group’s needs is disappearing and being replaced by patient engagement approaches that assess what it is that the patient needs, and how can we build a transparent, trusting and accountable  partnership to meet that need.  

This new win-win approach, that provides the patient movement with great opportunity but also responsibility, means that we need to fully engage with the pharmaceutical industry.

With IAPO managing the Patient Research Exchange, an editorial board comprised of members of the steering committee manages the Patient Research Exchange. We hope to use this asset differently to enhance IAPO’s Research Unit and 2017 Member Engagement and Empowerment Plan.

We will soon be inviting all our members and stakeholders, including the many state and non-state actors engaged in research and clinical trials, to share experiences and evidence bases to shape the future of patient-centric clinical trials and drug development.