An Unexpected Benefit of Adding the Patient Voice to Medical Education-Train Providers to Be Better.

Background: Amyloidosis is a complex multisystemic disease. Lack of knowledge about amyloidosis and subsequent misdiagnosis or underdiagnosis are major obstacles to treatment that result in life-threatening organ damage, heart failure, morbidity, and mortality. At present, medical didactic education about amyloidosis leaves new physicians woefully unprepared to suspect and diagnose it. A study published in 2023 confirmed a positive impact on medical students following a patient presentation. Continued analysis of the study data revealed an unexpected benefit of adding the patient voice to medical education. The purpose of this paper is to describe this unexpected and potentially powerful benefit.

Methods and results: The Amyloidosis Speakers Bureau (ASB), founded in 2019, arranges for ASB patient educators to speak about their diagnostic and treatment experiences with medical students. In 2023, we published a study to understand the impact from the addition of the patient voice to didactic medical education. The study concluded that listening to an ASB patient educator's narrative was associated with positive attitudes toward communication with patients, interest in acquiring and applying knowledge of amyloidosis, and humility about diagnosis. Post-publishing, continued analysis of the presentation feedback made it clear that another benefit was occurring. During the ASB presentations, questions were repeatedly raised about what guidance the patients might offer to help these budding doctors become better providers and how they could improve their relationships with patients. Their inquiries had nothing to do with amyloidosis and were relevant to every interaction and all diseases. These future providers wanted to be better and wanted the patient's perspective to help get there. Assessing their questions revealed an unexpected benefit from the patient presentations.

Conclusion: ASB patient educators contributed to humanizing medical education. From this, the students gained insights to help them become better providers.