Medscape Education – Realizing Potential through Rare Disease Education
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For almost 30 years, Medscape Education has been providing clinician education in more than 30 specialties. In 2021, Medscape Education launched Pathways in Rare Disease, a dedicated rare disease learning center that offers hundreds of education programs on rare diseases (RDs) presented by renowned faculty members and has reached over 1 million learners.
There is a concern that the IRA policy may act as a disincentivization for R&D in this space which could potentially impact both clinical advances and improvement in RD, as well as a desire from clinicians to further educate themselves.
Clinician Knowledge of and Education Preferences for Rare Diseases
Recognizing RDs and initiating appropriate investigation and referral is critical for timely diagnosis. Unfortunately, patients with RDs experience significant diagnostic delays, potentially impacting outcome. To assess clinician knowledge, experience, and educational needs in RD, Medscape administered a 14-question survey via email to US and EU Medscape member clinicians. Respondents included 978 clinicians across 16 specialties.
Clinician Knowledge of Rare Diseases
Two-thirds considered RDs to be 50 to 500 times rarer than standard EU or US definitions. Although 87% have been involved in a RD diagnosis, only 19% were mostly or very confident in making a diagnosis. Thirty-eight to 44% reported diagnostic barriers such as knowledge of signs/symptoms, time to investigate, guideline availability, test access, and referrals.
Education on Rare Diseases
The large number of learners who participated in education on the Pathways in Rare Disease learning center shows that education plays a large role in advancing care in this field and is sought out by clinicians. The survey showed that almost three-quarters of physicians (73%) learned about RDs in medical school. Published literature was the most popular source beyond medical school (72%) for gaining additional knowledge, with other important sources including seminars or meetings (62%), CME activities (54%), and specialty websites (48%).
The survey found that the highest RD education preferences included a comprehensive online learning platform with current education and resources;and case-based, text-based, and short formats (≤ 15 minutes) taught by world-renowned clinicians.
Organizations that are on the cutting-edge of medical advancement should put serious consideration into building rare disease R&D and education into their development plans. They can help advance the field and ensure that patients are treated with evidence-based care and optimize their outcomes. As shown by the survey above, this cannot be done in the absence of education.