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Effective Patient Advocacy:
Problem + Solution =
Collaboration
Alexandra Kyriakos, 3Sixty Public Affairs
Rare Disease Day ...
Agenda
1) What is advocacy?
2) Political and policy context
36
Advocacy is…
Source: Nanos Research Survey
“…the ability to
find in any given
situation,
all the available
means of
per...
Knowing your issue/story inside out
Step 1: Research
• Health care issues can be complicated and orphan drug
issues more s...
Politics
Policy
Process
• Relationships
• Political capital
• Fiscal policy
• Health policy
• Intergovernmental
• Drug rei...
Drug Development
Health Canada
Review
Patented Medicines
Prices Review Board
Health Technology
Assessment
Hospitals
Patien...
How does your issue align with government
platform, policy and priorities – health,
innovation, fiscal?
• Mandate letter (...
8
Challenging fiscal situations…
FED BC AB SK MB ON QC NB NS PE NL
Deficit
($ millions)
-2,900 879 465 71 -402 -12,500 -2,...
Some best practices
• Educating and networking with other patients and
caregivers about opportunities
• Collecting data – ...
Best practices for meetings
10
Ask how much time you have and plan to talk for half of it
(don’t take up all the air time)...
Can and often need to go beyond official channels –
becoming an effective advocate
11
Understand the complex dynamics surr...
Discussion
12
If you have questions, ask them,
you’ll feel better at your meeting
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Effective Patient Advocacy: Problem + Solution = Collaboration

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Rare Disease Day 2015 Conference Day 3: Alexandra Kyriakos

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Effective Patient Advocacy: Problem + Solution = Collaboration

  1. 1. Effective Patient Advocacy: Problem + Solution = Collaboration Alexandra Kyriakos, 3Sixty Public Affairs Rare Disease Day Conference 2015 March 7
  2. 2. Agenda 1) What is advocacy? 2) Political and policy context
  3. 3. 36 Advocacy is… Source: Nanos Research Survey “…the ability to find in any given situation, all the available means of persuasion” - Aristotle
  4. 4. Knowing your issue/story inside out Step 1: Research • Health care issues can be complicated and orphan drug issues more so • What are other jurisdictions doing • Problem AND solution • Does solution solve government problem Step 2: Develop Strategy and Tools • Identify obtainable objective(s) • Map decision-makers/influencers and try to find supporters (champions), establish coalition if possible • Prepare tools – briefing note, fact sheet, backgrounder, letter (s), summary of relevant research, letters of support etc. Step 3: Implement Strategy • Engagement – get out there…! • Strategy assessment / feedback and recalibration 4
  5. 5. Politics Policy Process • Relationships • Political capital • Fiscal policy • Health policy • Intergovernmental • Drug reimbursement • Regulatory reviews • HTA reviews • Negotiations • Listing decisions 5 Levels of engagement and advocacy…
  6. 6. Drug Development Health Canada Review Patented Medicines Prices Review Board Health Technology Assessment Hospitals Patient Access Private Drug Plans Provincial Drug Plans In advocating for treatments, you need to know WHAT you are influencing… • Where do patients and caregivers fit? • What are your main issues?
  7. 7. How does your issue align with government platform, policy and priorities – health, innovation, fiscal? • Mandate letter (from PM / Premiers to ministers) • Speech from Throne (opens parliament / sets agenda) • Budget (finances the government’s agenda) • Legislation (empowers government) • Government-sponsored • Private members’ legislation • Regulations (operationalizes government) • Cabinet approval with public comment period • Policy statements and guidelines 7 ELECTION PLATFORMS COMMS
  8. 8. 8 Challenging fiscal situations… FED BC AB SK MB ON QC NB NS PE NL Deficit ($ millions) -2,900 879 465 71 -402 -12,500 -2,345 -377 -274 -45 -916 Debt ($ billions) 615.8 39.8 -6.8 5.0 18.6 287.3 191.2 12.2 15.0 2.2 9.8 2014-2015f Deficit and Debt RBC Economics – Canadian Federal and Provincial Fiscal Tables (Feb. 24, 2015) Updated fin. Chart below Also, could add more recent headlines if desired or necessary (to replace older ones) - MP
  9. 9. Some best practices • Educating and networking with other patients and caregivers about opportunities • Collecting data – and sharing it! • Keeping things simple – and realistic • Looking for all opportunities to make your case 9
  10. 10. Best practices for meetings 10 Ask how much time you have and plan to talk for half of it (don’t take up all the air time) If you don’t know the answer to a question, say so, but offer to get an answer Ask for feedback and direction - does your message resonate? Who else should you meet? At the appropriate time, thank the host, summarize any follow-up steps and leave Follow up! Send a thank you, and keep them updated on your meetings with other government officials and staff
  11. 11. Can and often need to go beyond official channels – becoming an effective advocate 11 Understand the complex dynamics surrounding a decision / influencers More than simply the right arguments at the right time to the right people Demands creativity, patience and collaboration Long term perspective needed, but celebrate the wins along the way Planning your approach!
  12. 12. Discussion 12 If you have questions, ask them, you’ll feel better at your meeting

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