PARADIGM: Results from survey on stakeholder expectations on patient engagement


Patient engagement in the medicine R & D process is largely underutilized, despite the benefits of co-creation in delivering health solutions that meet patients’ defined needs and improve health outcomes. The PARADIGM project have surveyed stakeholders' expectations, needs and aspirations when it comes to patient engagement, and results are now available!

There is a lack of consistent, systematic and sustainable metrics that reflect different stakeholders’ perspectives on process, outcomes and return on engagement measures. Unfortunately, prior initiatives in this area have not routinely included underrepresented groups such as young people, people with dementia and unaffiliated patients, along with a broad group of diverse stakeholders in the co-creation of workable solutions.  

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The Patients Active in Research and Dialogues for an Improved Generation of Medicine (PARADIGM) project’s mission is to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) and demonstrates the ‘return on the engagement’ for all players. More information on the PARADIGM website,  on Twitter and LinkedIn.


The two Innovative Medicines Initiative (IMI) consortia PARADIGM, Patients Active in Research and Dialogues for an Improved Generation of Medicine (co-led by the European Patients’ Forum and the European Federation of Pharmaceutical Industries and Associations) and PREFER, Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (co-led by Uppsala University and Novartis) have established a Memorandum of Understanding aiming to enhance the cooperation and collaboration between the two projects.

Read joint statement

Last modified: 2021-11-10