Every person living with inflammatory bowel disease (IBD) can help change public policy by sharing their story and participating in advocacy events, such as visiting legislators in Washington, D.C. Amber talks to Kelly E. Dwyer, who teaches us how to prepare an elevator speech and gives us practical tips for Hill Day logistics, working within teams, staying emotionally resilient, and following up with staffers. Advocacy is for everyone, and persistence and collaboration can lead to real policy changes to benefit the IBD and chronic illness communities. By the end of the episode, you'll have the real resources you can use to do this work as a patient advocate both locally and nationally.
Chapters:
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00:05 Introduction and Guest Background
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01:23 The Role and Nature of Patient Advocacy
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02:37 The Long Game of Advocacy: Successes and Challenges
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04:37 Advocacy vs. Activism and Personal Motivation
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06:05 The Importance of Patient Stories in Advocacy
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06:52 Crafting and Delivering Your Elevator Speech
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11:46 Managing Emotions and Practicing Your Story
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15:42 Preparing for Advocacy Day: Research and Teamwork
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18:07 Training and Building Confidence for Hill Visits
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20:58 Coordinating with Your Advocacy Team
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22:38 Practical Logistics: What to Wear and Security
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24:42 Navigating Capitol Hill: Accessibility and Facilities
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29:26 Managing the Day: Scheduling and Flexibility
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32:17 During the Meeting: Structure and Communication
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36:04 Group Dynamics and Respectful Storytelling
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40:29 Building Relationships and Following Up
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42:12 How to Get Involved with Advocacy Groups
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44:42 Financial Considerations and Accessibility
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45:17 Encouragement and Closing Thoughts on Advocacy
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47:12 Lessons Learned the Hard Way
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50:33 Closing Remarks and Gratitude
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51:22 Outro and Credits
Topics on this episode:
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Overview of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis.
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Personal experiences of living with IBD and the impact on daily life.
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The role of patient advocacy in improving healthcare policies and patient rights.
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Challenges faced by patients regarding insurance barriers and treatment access.
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Importance of sharing personal stories with legislators to influence policy change.
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Distinction between activism and advocacy in the context of healthcare.
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Strategies for effective communication and preparation for advocacy efforts.
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The significance of teamwork and collaboration in advocacy initiatives.
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Resources and organizations that support IBD advocacy and patient education.
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Emotional aspects of sharing health experiences and the importance of building relationships with legislative staff.
Find Kelly E. Dwyer at:
Find Amber J Tresca at:
Find Mac Cooney (mix, sound design, and theme music) at:
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