Today, the last day of the shortest month, has been designated Rare Disease Day. And in honor of that, I am sharing this article by a pre-med student on the challenging dynamics between patients with rare diseases and their health care practitioners.
But first, a quick summary of key points:
“Research shows that over 87 percent of rare disease patients feel unsupported in their care due to a lack of trust and communication with their HCP compounded by the provider’s lack of knowledge.”
“…in most cases, HCPs do not possess sufficient knowledge of the rare disease to make an effective recommendation. As a result, patients with rare diseases find themselves experiencing a patient-directed communication pattern, in which they are forced to acquire knowledge of their disease on their own while physicians act as passive participants, predominantly providing consent for treatment that is first advocated for by the patient.”
And, the article itself. https://www.kevinmd.com/2023/02/educating-health-care-professionals-on-effective-communication-in-rare-disease-diagnoses-is-crucial-to-improving-the-rare-disease-patient-narrative.html