Justine is a 60-year-old grandmother who wants to spend her days at the park with her active grandson. Instead, she has spent the past two years bouncing from doctor to doctor before finally being diagnosed with polymyalgia rheumatica, a rare chronic inflammatory disease that causes muscle pain and stiffness in the shoulders and hips. Despite the relief of finally having a diagnosis, the hardest part was just beginning — finding a specialist who could provide meaningful care.
Justine’s story is far from unique. Approximately 30 million Americans suffer from one (or more) of the 7,000 recognized rare diseases, defined as conditions that each affect fewer than 200,000 people nationwide. The rarity of these diseases means only a handful of experts worldwide have in-depth knowledge about a specific condition, making access to experienced care challenging.
Patrick Howie
Founder, MediFind
“Getting a diagnosis doesn’t solve all your problems,” explained Patrick Howie, Founder of MediFind, a free website that helps people search for experts who treat particular conditions. “Finding a specialist who is knowledgeable about your condition and symptoms can be even more challenging.”
Finding the right specialist isn’t as simple as a Google search. Online reviews and star ratings may reflect bedside manner or the friendliness of the office staff, but offer little insight into a physician’s expertise. For most rare diseases, it is challenging to find a list of experienced providers. Where lists are available, they may be based off subjective information (like a doctor’s belief they are an expert) or other criteria (like marketing relationships) that makes it hard to get a real read on a provider’s expertise.
For people with rare conditions, finding a provider with experience, who is up to date on the latest research, is crucial. How many articles has the provider published in medical journals? Have they spoken at industry conferences or participated in clinical trials related to the condition? Do other doctors refer patients to them? These factors can drastically impact the management of rare conditions, and ultimately, a person’s health outcomes.
MediFind was founded to help people find the best doctors for their unique needs. MediFind’s algorithm uses machine-learning technology and proprietary natural language processing algorithms to continuously review medical information across a range of datasets. It also evaluates providers’ expertise treating specific conditions based on factors such as their research, how many patients with a given condition they treat, and their standing among their peers. Providers are then assigned an expertise score for each specific condition, so it is easy to tell which doctors are the best in the nation for care of that disease and which ones have less experience and expertise. With more than 3,500 health conditions listed on the site, and more than 2 million doctor profiles available, MediFind helps families facing rare diseases find high-quality, relevant specialty care.
“My family has been through this search, and I wanted to make it easier for others,” Howie said. “MediFind sifts through the noise and helps identify doctors who are at the top of their fields, so people can get the best care possible.”
To learn more, visit www.medifind.com
