The contribution of patients, patient groups, and patient experts provides tangible value to other stakeholders and society that should be fairly compensated.
Currently, there is no transparent and consistent system in place for financial compensation that reflects the level of individual contribution and expertise of patient partners. But it’s time to change that.
This survey is open to all stakeholders who are relevant to patient engagement and involvement in medicines research, development and delivery phases and lifecycle. By completing the questionnaire, you will help create a complete picture of various stakeholder points of view and inform the various projects addressing this issue (the survey it is currently closed, if you hace any questions, please contact the PFMD team).
Representatives of the industry including The European Federation of Pharmaceutical Industries and Associations (EFPIA), National Health Council (NHC) and Workgroup of European Cancer Patient Advocacy Networks (WECAN) are already leading the fair market value narrative for patient expertise and PFMD extends its support to synergise their efforts.
Compensation in the context of this survey means honoraria or other payment by third parties (not patient organisations) for individual tasks such as advisory boards, presentations, providing feedback, reviewing complex documents, etc.
Reimbursement of out of pocket expenses such as travel cost, accommodation, meals, etc. do not count as financial compensation for these tasks or for expertise.
SYNaPsE Community Manager
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