Co-author Dr. Adebanke Adebayo presented our recent research about the ASB at the DC Health Communication Conference.
Our research topic:
Amyloidosis Speakers Bureau (ASB) patient narratives: Impact on information seeking behaviors among medical students
Background: According to Newman-Toker, et al. (2023), misdiagnosis–including missed, delayed, and wrong diagnoses–leads to an estimated 371,000 deaths and 424,000 permanent disabilities in the United States each year. In response to these alarming statistics, the Centers for Disease Control and Prevention (CDC, 2024), released a diagnostic toolkit that contains sections for patients, families, and caregivers. One difficult-to-diagnose disease is amyloidosis, a protein-misfolding disease. It’s hard to diagnose in part because it manifests in a variety of organs and its symptoms are similar to those of many other diseases, symptoms such as fatigue, shortness of breath, etc. In this study, patient engagement was highlighted as crucial to a correct diagnosis. Using Amyloidosis Speakers Bureau (ASB) patient educator presentations, this study explores the impact of patient educator presentations on information-seeking behaviors among medical students. The theoretical frameworks used to support this study are narrative and persuasion theories.
Methods: The Amyloidosis Speakers Bureau (ASB) arranges for amyloidosis patients to speak about their diagnostic and treatment experiences with U. S. medical students. Using a survey of U.S. medical students (N=1,634) and ASB health information mailings (N=50), we hypothesized that patients’ narratives about their diagnostic and treatment journeys would positively impact medical students’ information seeking behaviors about this disease.
Results: Participants who listened to an ASB patient speaker had significant higher means on information seeking behaviors, including the voluntary decision to sign-up to receive additional information from the ASB mailing list. Similarly, participants who listened to an ASB patient speaker were significantly more likely to open email information about amyloidosis–52.74%, than were people who received emailed health information from other organizations using distribution services like Mailchimp–20%.
Conclusions: Listening to a patient’s narrative presentation was associated with a high open rate for periodically emailed information on amyloidosis research by medical students who signed up to receive this information. We believe this study adds to the growing call-to-action to integrate patient narratives into medical curricula through platforms like the ASB. Future longitudinal studies should be conducted to explore the outcomes reported in this study over longer time frames.
