1、Clinical Trials Ontario conference6 November2024Stuart Nicholls,on behalf ofPascale Nevins,Grace Fox,Shelley Vanderhout,Jamie Brehaut,Kelly Carroll,Dean Fergusson,Beatriz Goulo,Alicia Hilderley,Colin MacArthur,Beth Potter,Maureen Smith,Anne Spinewine,Charles Weijer,Monica Taljaard,Recognition and re
2、muneration of patient partners in clinical trials,PPI,patient engagement,consumer engagement“Research done with or by patients and the public,not to,about or for them.It is about working collaboratively with patients and the public and sharing decision-making”(UK)“The idea is for patients,researcher
3、s,health care providers and decision makers to actively collaborate to build a sustainable,accessible,and equitable health care system to bring about positive changes in the health of people living in Canada.Engaging patients is thus an integral component in the development and implementation of all
4、 elements of SPOR.”(Canada),Patient and Public Involvement(PPI)in clinical trials,World Medical Association(2024).World Medical Association Declaration of Helsinki:Ethical Principles for Medical Research Involving Human Participants.JAMA Published online October 19,2024.:E1-E4.World Health Organizat
5、ion(2024).Guidance for best practices for clinical trials.Geneva,Switzerland,World Health Organization.,“This patient engagement should be a norm and embedded in an appropriate manner in all trials;it is not an optional extra”(WHO,2024),Demonstrating PPI is valued,Patient or Public(PPI)Partner Recog
6、nition,Remuneration,Recognition,Reimbursement,Reimbursement of out-of-pocket expenses from engagement(e.g.accommodation,travel costs),Offering something of monetary value in exchange for their engagement(e.g.honorarium,salary),Offering goods or services in exchange for patient partnership(e.g.co-aut