Sarah is a healthcare strategy consultant with over 15 years of experience spanning medical affairs strategy, patient engagement and communications. Sarah specializes in patient-centred strategy, with particular interests in behaviour science and embedding the patient voice into clinical development.
-Europe’s first JCAs, which examine how well new medicines work and how well they’re tolerated, compared with existing treatment options, have now been published. This provides an initial opportunity to examine how rare disease patient and caregiver perspectives are incorporated into the assessments. However, while patient voices are present in the reports, is there evidence that they influence the assessment itself?
In this working session, participants will:-
-Examine what the published rare disease JCAs reveal about the transparency and impact of patient and caregiver involvement
-Assess what "meaningful impact" looks like for patients involved in JCA decision-making during a roundtable discussion with our expert clinician and patient representative speakers
-Co-create recommendations to support meaningful representation of patient and caregiver perspectives in Europe’s JCA process for rare diseases and paediatric conditions