Transcript Slide Presentation - of RP Fighting Blindness

Patients’
Perspective on HTA
and Off-label use
David Head MBA
Chief Executive
RP Fighting Blindness
25th Annual
EuroMeeting
4-6 March 2013
RAI, Amsterdam
Netherlands
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RP Fighting Blindness
Context: What is RP Fighting Blindness?
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UK Charity
Patient Organisation
Research Funder
Provider of Patient Information
Provider of Patient Support
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Retinitis Pigmentosa
Context: What is RP?
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Retinitis pigmentosa – a genetic condition
Degeneration of retinal cells
Progressive sight loss
Currently not preventable or curable
Orphan Disease affects 2 – 3m worldwide
Off label prospects
Devices and drugs in clinical trials
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Straw Poll
Not very scientific but ….
• Have you ever heard of
Healthcare Technology Assessments?
93% said no
• Have you heard the term "Off Label Use“
84% said no
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Industry Stakeholders
Regulators
Patients
Patient
Organisations
Pharma
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Patient Decision Making
Pain
Friends
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Patient Perspective
• Video embedded here
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Patient Perspective
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Patient Organisation Priorities
The Obvious Suspects
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Expediting trials and approvals
Access to therapies
Safety
Risk benefit decisions
Real life and quality of life issues
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Summary
• No patient population perception on HTAs
and off-label use
• Patient Organisation and Experts are a
different kettle of fish
• These are self-selecting groups
• Work is needed to build trust in pharma
and regulators, but patients trust their
healthcare professionals
• Note: My perspective is inevitably tainted
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Old Stakeholder Map
Pharma
Regulators
Patients
We are all people first
Pharma
Regulators
Patients
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Patients’
Perspective on HTA
and Off-label use
David Head MBA
Chief Executive
RP Fighting Blindness
25th Annual
EuroMeeting
4-6 March 2013
RAI, Amsterdam
Netherlands