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- Zal Press
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DISCLOSURE I have the following relevant financial relationships to disclose: • Received honoraria from various pharmaceutical companies,
academic institutions, research organizations, care delivery organizations, and government agencies across the continuum of care
• I do not make a living from these activities. • CADTH provided travel award to present at today’s Symposium • I have been prescribed and purchased drugs from over a dozen
manufacturers that have an aggregate value in excess of $800,000 I have the following relevant non-financial relationship to disclose: • I was founding Co-Chair of The Beryl Institute Global Patient and
Family Advisory Council, a sister organization to the Patient Experience Journal which published our paper on today’s topic.
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Paying Patients
“Are you kidding?” - Name withheld
A Patient Perspective on Compensation
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"Experience is a hard teacher because she gives the test first, the lesson afterwards.“
- Vernon Law
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Do you have a PhD in Lived Experience?
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“People with chronic conditions are now explicitly conceptualized as part of the healthcare workforce, are delegated tasks by the system, and given performance targets. This can create new inequalities.”
- Carl May
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Context
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Is compensation a question of: •value? •equality? • reciprocity?
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Basic Principles
1. Removing barriers to participation
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Basic Principles
2. Equity
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Basic Principles
3. Different Motivations
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Basic Principles
4. Respect for vulnerability
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Basic Principles
5. Commitment
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Basic Principles
1. Removing barriers 2. Equity 3. Different Motivations 4. Respect for vulnerability 5. Commitment
What would you add?
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Context
Compensation ≠ payment of expenses
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The Golden Rule
Start the Conversation
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Start Early
• Addressed by project lead
• 1:1 conversation
©K
imb
erly
Str
ain
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Rates
• Limited guidance
• Hourly, lump sum?
• Ask patients about own rates
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Implications of Monetary Compensation
• Taxes
• Disability payments
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Non-Monetary Compensation
Non-Monetary
*Unrelated to the project
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The How
“Sit them down and ask them how they want to be engaged….Don’t assume, just ask!”
Source: Black, A., et al., What constitutes meaningful engagement for patients and families as partners on research teams? Journal of Health Services Research & Policy, 2018.
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Questions
Share with your neighbour: - Questions you have now - Questions you brought with you
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Richards, Dawn P.; Jordan, Isabel; Strain, Kimberly; and Press, Zal (2018) "Patient partner compensation in research and health care: the patient perspective on why and how," Patient Experience Journal: Vol. 5 : Iss. 3 , Article 2. Available at: https://pxjournal.org/journal/vol5/iss3/2
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Download
http://bit.ly/PatientCompensation