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

The Narrative Unstructured conversation Measures SUFFERING NO Incentives free-willed participation

Trust and Collaboration T1D Think Tank Collaborative Model: (  “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: to: For More About What Matters to Patients: