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 questionNarrative:• # 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:zal@patientcommando.com

michael@sandpile.ca

For More About What Matters to Patients: