ethics in drug developmental processes – societal perspectives joint medicines policy conference...
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Ethics in Drug Developmental Ethics in Drug Developmental Processes – Societal Processes – Societal
PerspectivesPerspectivesJoint Medicines Policy
Conference 2011
Jennifer Doggett
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• Dorian Gray pill
• Biologically-targeted
• Stops ageing
• No side effects
• $100k per year
Ref: Prof Greg Mankiw NY Times 2009
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Policy response – open marketPolicy response – open market
Cost
Equity
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Policy response – subsidise for allPolicy response – subsidise for all
Cost
Equity
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Policy response – partial subsidyPolicy response – partial subsidy
• Old or young?• Sick or well?• Disadvantaged?• Everyone the
same?
Cost?
Equity?
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Policy response – total banPolicy response – total ban
Equity
Cost
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How to decide? How to decide?
• Values and ethics• Trade-offs –
opportunity costs
• No empirically ‘right’ answer
• ‘Right’ answer is the one which best reflects community values/preferences
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Who decides?Who decides?
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Evidence of the problemEvidence of the problem
• Consumer feedback• Adverse events• Reporting mechanisms• Lack of transparency• Post-market surveillance• Poor communication• Lags behind other areas• Solutions ignored
““Jurors stated that Jurors stated that
the current the current
distribution of distribution of
health care does health care does
not adequately not adequately
reflect the value reflect the value
they attached to they attached to
equity”equity”
Ref: Citizens Jury on health priorities 2010—Report by ACT Health Council
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The 7 Deadly Sins of ‘Healthspeak’The 7 Deadly Sins of ‘Healthspeak’
• Sustainability• Priorities• Resource constraints• Risk issues• Data gaps• Privacy• Complexity/technical
barriers
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VSVS
Set-top Set-top boxbox
New New Arthritis Arthritis medicinemedicine
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Trends in health careTrends in health care
Choice
Individualism
Targeting
Diversity
Interactive
Linkages
1960s1960s
1980s1980s
2010s2010s
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Values and principlesValues and principles
• Values and ethics issues
• No underlying principles
• Missed opportunity - NHHRC
• Community values
• Citizen focus – engage minorities/disadvantaged
• Ongoing process
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Key questionsKey questions
• How much do we spend on health?
• Where should we allocate resources?
• What proportion of costs should be shared?
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Other processes:Other processes:Consumer RepsConsumer Reps
• Progress but still gaps
• Isolated
• Increased support
• Networking
• Role of peaks crucial
• Communication
• Research base
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Consumer input: Consumer input: Future trendsFuture trends
• Pro-active
• Dynamic
• Interactive
• New technologies
• Multiple sources/processes
• Personalised
• Real-time
• Mobile
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Future directionsFuture directions• Citizens’ Council -
NICE• Crowdsourcing• Deliberative
democracy• Social media• Microparticipation• Prediction markets• Wikis• Market data
www.expertlabs.org
http://cdd.stanford.edu
www.nice.org.uk
www.activedemocracy.net
Dr Kathy Stiller AHR 2008 Vol 32 No 2Dr Kathy Stiller AHR 2008 Vol 32 No 2It’s not the evidence, it’s the way It’s not the evidence, it’s the way that you use it. that you use it.
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ConclusionConclusion
• No crystal ball
• Principles and values
• Robust processes
• Cultures
• Inertia
• Point the thumb