b5 zal press cadth-final
TRANSCRIPT
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Bringing the Power of Patient Narrative to Patient
Submissions
Zal Press, PatientCommando.com Michael Houlahan, Type 1 Diabetes Think
Tank Network
Going Beyond Surveys
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To compare the effectiveness of surveys vs. patient narratives in the preparation of patient input.
To consider the impact of patient narratives on the understanding of patient experience in the Common Drug Review.
Objectives
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• Principle of Patient Engagement
• Patient Group input
• 35 days to prepare and submit
• Structured templates
• Reimbursement
Context
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Stories alter brain chemistry.
Chemical rush includes:• dopamine• Cortisol• oxytocin, 'love molecule’ generates empathy.
Princeton University research:• Same regions of their brains light up on fMRI scans in
storytellers and listeners
Evidence of Impact
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Every patient has a story. The very act of telling our story makes us feel good. When the story comes from an honest place and is well told, it has the power to change lives.
Stories Trump Data
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Engagement Models
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The Survey• Structured questionnaire• Measures PAIN• Incentives
• Win an iPad
Methods
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Methods
The Narrative• Unstructured conversation• Measures SUFFERING• NO Incentives
• free-willed participation
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Trust and Collaboration
T1D Think Tank Collaborative Model: (www.t1thinktank.com)“Insight sessions” Approach to collaboration and partnership between Health Care providers and Patients emphasizes communication, learning and respect.
– Patient can be assured Health Care providers will listen and respond to their unique issues; Health care Providers are confident that patients have the self –assurance and knowledge to care for themselves
Insight Sessions Learning Objectives: Intensify appreciation of the lived T1Diabetes experience Recognize the value of the narrative to clinical practice Using reflection to integrate narrative into practice Understand the role of active listening
Outputs: Patients/HCP video vignettes, stories data base (prose, poetry, visual/performing arts)
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Survey:•Simple data collection
•Collated data
•Limited by capacity:• Funding• Human Resources
Analysis
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Narrative:• Work within a realist paradigm• Inductive qualitative approach focusing on description• Link identified themes to the data set rather than to theoretical perspectives• Teachable and inclusive of patient voice
Analysis
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Survey:
Pain - Survey
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Pain - Narrative
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Treatments - Survey
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Treatments - Narrative
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Survey:• # respondents who answer a questionNarrative:• # people engaged in the conversation• % of community members engaged in issues that matter to patients.
Measurement
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Issues That Matter
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• Are we:o Doing to?o Doing for?o Doing with?
• authentic patient voices• respect the patient experience• pain, anguish, sorrow, grief• meaningfully measure
Where are we on the ladder?
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1. Provide independent professional support to patient groups• Proactively notify patient groups• Employ and train professional patients
2. Invest in Industry Communications• Teach industry and expert committees how to
listen effectively to the Patient Experience• Enable opportunities for engagement
between all stakeholders and patients
Strategies for Improving Patient Submission