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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
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
• Principle of Patient Engagement
• Patient Group input
• 35 days to prepare and submit
• Structured templates
• Reimbursement
Context
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
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
Engagement Models
The Survey • Structured questionnaire
• Measures PAIN
• Incentives
• Win an iPad
Methods
Methods
The Narrative • Unstructured conversation
• Measures SUFFERING
• NO Incentives
• free-willed participation
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)
Survey:
•Simple data collection
•Collated data
•Limited by capacity:
• Funding
• Human Resources
Analysis
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
Survey:
Pain - Survey
Pain - Narrative
Treatments - Survey
Treatments - Narrative
Survey:
• # respondents who answer a question
Narrative:
• # people engaged in the conversation
• % of community members engaged in
issues that matter to patients.
Measurement
Issues That Matter
• 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?
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
Text or call:
416-540-3703
email to:
For More About What Matters to Patients:
