โก Quick Summary
A recent study highlights the urgent need for rare disease (RD) education in medical schools, revealing that approximately 300 million people globally are affected by RDs. Innovative strategies, including patient panels, have shown to significantly enhance medical students’ knowledge and confidence in caring for RD patients.
๐ Key Details
- ๐ Participants: 175 first-year medical students and 109 Special Master’s Program students
- ๐งฉ Methodology: Pre- and post-panel surveys with ANOVA statistical analysis
- ๐ Scoping Review: Analyzed 11 studies on RD education from various medical schools worldwide
- ๐ Outcomes: Improved attitudes and knowledge regarding RDs among students
๐ Key Takeaways
- ๐ Prevalence: Nearly 30 million Americans live with a rare disease.
- ๐ก Patient Panels: Effective in enhancing students’ understanding of the RD patient experience.
- ๐ Diverse Approaches: Medical schools employ various educational interventions, including lectures and simulations.
- ๐ Positive Results: All reviewed interventions reported improved attitudes and knowledge among participants.
- ๐ฃ๏ธ Lack of Patient Input: Many interventions did not incorporate feedback from RD patients and caregivers.
- ๐ค Innovative Tools: Technologies like artificial intelligence are being explored for RD education.
- ๐ฅ Future Directions: Continued integration of RD education into medical curricula is essential.
๐ Background
Rare diseases (RDs) represent a significant global health challenge, affecting approximately 300 million individuals worldwide. Despite their prevalence, many healthcare providers lack the necessary training and awareness to effectively care for patients with RDs. This gap in education has prompted advocates to push for enhanced RD education within medical schools, aiming to improve patient outcomes and care quality.
๐๏ธ Study
In 2023, the authors conducted a patient and caregiver panel at their medical school, targeting first-year medical students and Special Master’s Program students. The study utilized pre- and post-panel surveys to assess changes in students’ attitudes and knowledge regarding RDs. Additionally, a systematic scoping review was performed to evaluate global approaches to RD education in medical curricula.
๐ Results
The results from the patient panel indicated a significant improvement in students’ attitudes, knowledge, and perceived value of RDs. Students reported increased confidence in their ability to care for RD patients. The scoping review revealed that while educational interventions varied widely among institutions, all reported positive outcomes, including enhanced knowledge and attitudes among participants.
๐ Impact and Implications
The findings from this study underscore the importance of integrating RD education into medical training. By employing innovative strategies such as patient panels and leveraging technology, medical schools can better prepare future healthcare providers to address the needs of the 300 million individuals affected by RDs globally. This proactive approach is particularly crucial in low- and middle-income countries, where challenges in RD care are often more pronounced.
๐ฎ Conclusion
This study highlights the critical role of patient-centered education in enhancing medical students’ understanding of rare diseases. By adopting diverse and innovative educational strategies, medical schools can significantly improve the preparedness of future physicians to care for RD patients. The authors advocate for the continued integration of RD education into medical curricula, ensuring that healthcare providers are equipped to meet the needs of this vulnerable population.
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Rare disease education in medical schools: patient-centered and innovative strategies.
Abstract
PURPOSE: Globally, approximately 300 million people live with a rare disease, while in the United States, nearly 30 million, or 1 in 10 Americans, have a rare disease or disorder (RD) (The Lancet Global Health. Lancet Glob Health 2024. https://doi.org/10.1016/S2214-109X(24)00244-0 ; National Center for Advancing Translational Sciences. Rare disease day at NIH 2024; 2024). Despite the prevalence of RDs, many physicians do not have adequate awareness of RDs or training to care for RD patients. RD advocates are focusing on undergraduate medical education to improve timely and quality care for RD patients. Thus, in 2023, the authors conducted an RD patient panel at their medical school and a scoping review of global medical schools’ approaches to integrating RD education into their curricula. While the panel was implemented in a U.S. context, the scoping review revealed diverse approaches applicable worldwide, highlighting the need to prepare medical students for the global burden of RDs, which affect approximately 300 million people across WHO regions, with significant challenges in low- and middle-income countries (LMICs) (The Lancet Global Health. Lancet Glob Health 2024. https://doi.org/10.1016/S2214-109X(24)00244-0 ).
METHOD: In 2023, the authors implemented an RD patient and caregiver panel for first-year medical students (nโ=โ175) and Special Master’s Program students (nโ=109). Pre- and post-panel surveys with ANOVA statistical analysis assessed attitudes toward and knowledge of RDs. The systematic scoping review from the databases MEDLINE, Embase, ERIC, and Web of Science sought international literature written in English discussing RD education in medical schools. From 11 relevant studies, the authors analyzed broad trends in RD education and their outcomes.
RESULTS: Pre- and post-survey results from the patient panel demonstrated improved students’ attitude, knowledge, and value of RDs. Confidence in caring for RD patients also increased significantly. From the scoping review, educational intervention types and content varied broadly among medical schools. Many institutions employed multiple interventions simultaneously, and all reported positive attitudes, higher knowledge from participants, or both. However, interventions lacked input from RD patients and caregivers.
CONCLUSIONS: Patient panels improved students’ understanding of the RD patient experience. Beyond patient panels, effective approaches in RD education in undergraduate medical curricula included lectures, case studies, role-playing simulations, artificial intelligence, and more. The authors hope medical schools will continue to implement RD education into their curricula.
Author: [‘Huynh S’, ‘Wan EL’, ‘Pham A’, ‘Yoon R’, ‘Dorris S’, ‘Yazigi N’, ‘Jones JM’]
Journal: Orphanet J Rare Dis
Citation: Huynh S, et al. Rare disease education in medical schools: patient-centered and innovative strategies. Rare disease education in medical schools: patient-centered and innovative strategies. 2025; 20:596. doi: 10.1186/s13023-025-03771-8