Post on 11-Apr-2017
BUILDING A NETWORKWhat is a network?A group of interconnected people who interact with one another to
exchange information and develop contactsGovernment
Patients and families
Health professionalsAcademic
researchers
Industry
BUILDING COLLABORATIONWhat is collaboration?
Working with various stakeholder groups to jointly achieve a shared outcome
Policy options that facilitate
sustainable access to effective therapies
WHAT ABOUT PRISM?• An example of the importance of both
Network
Collaboration
Goal“To create a knowledge base for supporting the design of public
policies and processes that enable the development and introduction of health technologies for rare diseases which optimize both outcomes and the use of
healthcare resources in Canada”
Right drugs
Right patients
Right time
Right place
HOW HAS PRISM TRIED TO ACHIEVE THIS?• A multi-‐disciplinary, international team of people from all
stakeholder communities
• A combination of independent domain projects and integrated (multi-‐domain) projects
• Reliance on PRISM network
• Need for collaboration
PROJECTS RELYING ON PRISM’S NETWORK
•Analyses of orphan drug development costs and revenues
• Exploration of the use of revenue caps based on risk and capital adjusted costs
Industrial policy: R&D costs and incentives
•CF therapies case study, jurisdictional scan, and review of relevant scholarly methods work
•Analysis of the work of European groups within the Canadian context
Regulatory policy: Clinical trial design: Measuring efficacy and effectiveness
• International comparison of pharmaceutical access policies (including HTA and centralized drug reviews)
• Pan-‐Canadian jurisdictional scan of processes and availability of specific orphan drugs
Reimbursement policy: HTA
processes and coverage options
• Consider whether reliance on safety net programs is sustainable
• What about managed access programs ?
• Optimize the role of public insurance as a key player in creating a market for innovation
• Build on the work of European groups
• Need to examine willingness to accept uncertainty in benefits and harms
PROJECTS BUILT ON COLLABORATION
•Citizens juries to gauge public sentiment around access to high cost therapies that benefit small populations
• Involved multi-‐stakeholder panel sessions and trade-‐off exercises
Societal values to inform public
policies
•Workshops, focus groups and webinars involving patients and families
•Analysis of international experience with MAPs•Patient-‐led development of MAPs checklist
Patient-‐developed model for managed access programs
(MAPs)
•Workshop for provincial drug plan managers•Preparation of document containing PRISM related research findings around evidence, access and communications
Support to the inter-‐provincial working group
• It isn’t all about numbers
• It is about ensuring that the gain in quality of life is significant
• Views on MAPs are mixed – great idea, buthard to implement
• Checklist contains questions to ask when developing a MAP
• Continued provision of information that reflects the best available evidence to support the group’s work
WHAT HAVE WE LEARNED?
• Developing the level of trust needed to engage in meaningful multi-‐stakeholder work takes time
• We need to be innovative but also realistic in our approaches to industrial, regulatory and reimbursement policies
• We now have a shared and solid foundation of knowledge on which to build
WHAT HAVE WE LEARNED?• It isn’t all about
numbers• It is about ensuring
that the gain in quality of life is significant
• Views on MAPs are mixed – great idea, buthard to implement
• Checklist contains questions to ask when developing a MAP
• Continued provision of information that reflects the best available evidence to support the group’s work
• Developing the level of trust needed to engage in meaningful multi-‐stakeholder work takes time
• We need to be innovative but also realistic in our approaches to industrial, regulatory and reimbursement policies
• We now have a shared and solid foundation of knowledge to build on
MORE INFORMATION• It isn’t all about
numbers• It is about ensuring
that the gain in quality of life is significant
• Views on MAPs are mixed – great idea, buthard to implement
• Checklist contains questions to ask when developing a MAP
• Continued provision of information that reflects the best available evidence to support the group’s work
• Website address: www.prismfive.org
• Email: menon@ualberta.ca
THANK YOU!