Dr Emma Huskinson
Communications Lead, Medics4RareDiseases
Training to equip healthcare professionals to diagnose and treat people with rare conditions with confidence and compassion is an important part of the patient journey.
Collectively, rare diseases form a discipline of medicine with unique challenges and unmet patient needs. A fundamental understanding of rare disease is therefore essential for healthcare professionals. Medics4RareDiseases (or M4RD) is a charity dedicated to providing and promoting rare disease education for medical students and doctors, to help improve the lives of those living with rare conditions.
Healthcare professionals’ knowledge of rare disease
MedScape’s study of clinicians has highlighted large knowledge gaps when it comes to rare disease and the need to increase basic understanding. This information supports initial results from a new study by M4RD, assessing the objective and subjective knowledge of rare disease in UK medical students.
Half of the medical students surveyed could not define a rare disease, and less than 10% correctly identified that over 3 million in the UK are affected by one. These initial results, along with those from Medscape’s study, illustrate how imperative it is to educate healthcare professionals on the basics of rare diseases from the very beginning of training.
Many will not benefit from these innovations in
science if medical education doesn’t also evolve.
The way forward in medical education
Advances, such as those in genomic medicine, hold vast potential to improve the lives of people living with rare diseases. However, many will not benefit from these innovations in science if medical education doesn’t also evolve.
Doctors need to be trained to suspect rare disease to help address the ‘diagnostic odyssey’ faced by those with rare conditions (which means it can take years to reach a diagnosis). They need to be educated on the common challenges associated with rare conditions, the painful issues of coordination of care and the fundamental role of advocacy.
Collaboration and mandatory rare disease training
M4RD is making headway into its mission to advocate and provide rare disease training. The charity is proud to be working with Barts and the London School of Medicine and Dentistry, Queen Mary University of London. Together, they are evaluating the undergraduate medical curriculum content and integrating rare disease education into it.
The charity will also be providing rare disease training to newly qualified doctors through mandatory training with Sheffield Foundation Teaching Hospitals NHS Foundation Trust. The hope is that, eventually, all medical schools and foundation programmes will include mandatory training on rare disease. Only through innovative training can we better recognise, diagnose and holistically manage rare conditions for people affected.
