2. Bringing the Power of Patient Narrative to Patient Submissions Zal Press, PatientCommando.com Michael Houlahan, Type 1 Diabetes Think Tank Network Going Beyond Surveys

3. 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

4. Principle of Patient Engagement Patient Group input 35 days to prepare and submit Structured templates Reimbursement Context

5. 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

6. 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

7. Engagement Models

8. The Survey Structured questionnaire Measures PAIN Incentives Win an iPad Methods

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

10. 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)

11. Survey: Simple data collection Collated data Limited by capacity: Funding Human Resources Analysis

12. 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

13. Survey: Pain - Survey

14. Pain - Narrative

15. Treatments - Survey

16. Treatments - Narrative

17. Survey: # respondents who answer a question Narrative: # people engaged in the conversation % of community members engaged in issues that matter to patients. Measurement

18. Issues That Matter

19. 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?

20. 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

21. Text or call: 416-540-3703 email to: zal@patientcommando.com michael@sandpile.ca For More About What Matters to Patients: