Your Voice. Your Impact.
Turning Lived Experience Into Lasting Advocacy
Whether you joined me in the room or online, thank you for being part of this conversation. This free Patient Advocacy Action Guide is a companion to my HealtheVoices 2026 session, with practical tools, reflection prompts, and a 30-day action plan.
Six ways to turn your story into action.
5
Your experience navigating a condition, healthcare systems, and everyday life can reveal unmet needs that data alone may not capture.
TRY THIS: Write down three things you wish someone had told you earlier in your journey.
Recognize your lived experience as expertise
1
Ask who you want to reach, what they should take away, and what you want to keep private. You never owe anyone every detail of your health journey.
TRY THIS: Complete: “I use my voice to help ______ understand ______.”
Share with purpose and boundaries
2
Listen as much as you share. Answer thoughtfully, acknowledge experiences different from your own, and connect people with credible information and support.
TRY THIS: Reach out to an advocate outside your health community and learn about an issue important to them.
Turn followers into meaningful connections
3
6
Make the next step clear
Build relationships that support your mission
4
Connect with community organizations, nonprofits, clinicians, researchers, and fellow advocates. Start with shared values and a specific need—not just the size of a platform.
TRY THIS: Identify one potential collaborator and a concrete goal you could work toward together.
An awareness post can become a pathway to action when it offers a credible resource, an opportunity to participate, or a specific question for decision-makers.
TRY THIS: Choose one issue in your community and one action you can take this month.
Likes and views are not the only measures of impact. Consider conversations started, resources shared, relationships built, patient input invited, and barriers addressed.
TRY THIS: Keep a monthly record of meaningful advocacy outcomes—small wins count.
Measure what matters
Your next 30 days
Choose what fits your capacity. Small, intentional steps create momentum.
☐ Define one advocacy goal.
☐ Identify one unmet community need.
☐ Connect with one potential collaborator.
☐ Share one purposeful resource or message.
☐ Reflect on what changed, and what you learned.
Helpful places to start
Organizations and communities I trust for patient education, advocacy, and support.
Color of Gastrointestinal Illnesses (COGI)
Improves quality of life for BIPOC people affected by IBD and other digestive illnesses through community, research, education, and advocacy.
Link: https://colorofgi.org/
IBD Social Circle
A community of patient advocates, caregivers, and healthcare professionals creating resources for people affected by IBD, including online conversations with IBD leaders and advocates.
Link: https://www.ibdsocialcircle.com/
Crohn’s & Colitis Foundation
Works to find cures for Crohn’s disease and ulcerative colitis and to improve life for people affected by IBD.
Link: https://www.crohnscolitisfoundation.org/
Strategic Alliance for Intercultural Advocacy in GI (SAIA)
A patient-clinician led nonprofit working to improve cultural sensitivity in GI care across global communities.
Link: https://saia-gi.org/
Girls With Guts
A community for women with inflammatory bowel disease and/or ostomies, where members learn from each other and don’t have to face it alone.
Link: https://girlswithguts.org/
AGA GI Patient Center
Plain-language information from the American Gastroenterological Association on digestive conditions, diet, and procedures, plus a directory for finding a gastroenterologist or dietitian.
Link: https://patient.gastro.org/
The conversation doesn’t end here.
Thank you for being here. Follow me on Instagram @kimberlymhooks , and join The Hooks Letter for advocacy tips, resources, and updates.
The information on this page is for general education only and is not a substitute for professional medical advice. Please talk with your healthcare provider about your own health questions.