Amplifying the Future of Patient Voices and Cross-Disease Networking Through the Advocacy Exchange

Patient advocacy is essential for progress in healthcare to improve clinical practice and treatments, but advocacy is neither well understood nor supported. Advocacy work is often placed on those already negotiating social burdens, caregiving, and diagnoses. The Advocacy Exchange (TAE) rose as a community-led, public-private partnership, becoming the largest cross-cultural, cross-therapeutic, global network of health-related advocates. TAE is co-created with leaders from the nonprofit, healthcare, governmental, and business sectors as an innovative accelerator of advocacy-industry relationships, integrating patient experience into healthcare systems and supporting individuals on advocacy journeys, whether they are 3 days or 3 decades postdiagnosis. Across 4 years of online gatherings, resource sharing, and partnership-matching, TAE has reached 77,500 website visitors from 120 countries with 7100 registrants representing more than 325 organizations. Forty-five live sessions co-created with advocates show robust community participation for sessions on health equity, patient dignity, and patient voice, leading to 50-plus hours of YouTube content viewed 97,000 times with 15 million social media impressions. Survey data show an engaged community grateful for peer connections and collective problem-solving. Lessons learned can serve to accelerate public-private partnerships and amplify patient voices. Themes include: (1) individuals being forced into advocacy by need; (2) consistent presence of barriers and discrimination in healthcare; (3) importance of discussing hard subjects; (4) need for neutral meeting spaces; and (5) opportunities to bridge industries and advocacy for progress. TAE will broaden its umbrella by building more partnerships for community members, targeting access and equity in healthcare, and shaping the understanding of advocacy.