At the 2023 Society to Improve Diagnosis in Medicine conference, two members of the Patient-Partnered Diagnostic Center of Excellence, Dr. Traber Giardina and Mary A. Hill, were awarded the Best Scientific Poster for their study titled "Amplifying Marginalized Voices: Exploring Misdiagnosis Experiences on TikTok."
The study explored how researchers might use TikTok to learn about the misdiagnosis experiences of individuals from historically marginalized communities, particularly Black women. "There is so much we can learn from patient's experiences in the healthcare system," Hill said, "we just have to listen."
Social media platforms like TikTok have become vital spaces for individuals to share healthcare stories, seek support, and raise awareness about disparities they experience when seeking care. Despite this, there's limited research on how these platforms contribute to diagnostic safety and community engagement.
The researchers in this study viewed a sample of 100 TikTok videos by searching the hashtags "#misdiagnosis" and "BlackWomen." Of the 100 videos they reviewed, 28 were about misdiagnosis in Black women and 21 focused on misdiagnosis of other groups such as women in general or people with disabilities. The relevant videos fell into 2 main categories: 1) informational content about misdiagnosis, and 2) personal stories and first-hand experiences.
Videos about misdiagnosis in Black women focused on disparities that occur at the intersection of gender bias and racial bias. Most videos were not about "diagnostic error" broadly, but instead targeted misdiagnosis of specific conditions such as Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), and Polycystic Ovary Syndrome (PCOS). Others included stories about pregnancy/childbirth-related complications, and symptoms that were still undiagnosed.
Overall, this study underscored the importance of listening to patient stories to understand diagnosis and diagnostic errors. There is a wealth of publicly available information about patient experiences with misdiagnosis, and a large online community built by Black women to share their stories and give advice about navigating the healthcare system. Researchers and healthcare workers can learn from these individual's stories and gain insights into the systemic challenges faced by underserved communities.
Giardina and Hill's work exemplifies the importance of integrating patient perspectives into research about diagnostic error, and in working toward more equitable and effective healthcare outcomes.