Who: Patrick Howie knows the importance of patient self-advocacy. When his brother, Dennis, was diagnosed with semi-rare terminal cancer, their family spent hundreds of hours doing internet research to find the best care. It took more than three months to locate a surgeon who specialized in treating Dennis’ specific cancer, and over a year to find out about a relatively new treatment option. Within two years Dennis had died, but Howie continued to think about how much more time his brother may have had if he’d just had access to the right information and treatment options for his disease sooner. So in February 2020, Howie founded MediFind to help ensure all patients have the tools they need to advocate for themselves and receive the best care available.
What: Howie estimates more than one million research reports, presentations, and clinical trial results are published every year in the medical community. Not only is it difficult for patients to keep up with and gain access to this information but often, medical knowledge advances so quickly, even medical experts are unable to keep up with every new study, treatment, or clinical trial.
MediFind has established a digital platform that uses machine learning techniques and algorithms to curate the latest information from around the globe about a wide range of chronic and rare conditions. With a simple search, patients can find expert information about their symptoms, locate facilities offering the latest clinical trials and treatments, and find doctors who have the most knowledge about their condition.
“Experts don’t all agree about how to treat patients,” Howie said. “So, what patients want is optionality and they also want to know about treatments that, maybe, their experts don’t even know about or forgot to tell them about.”
The database also enables patients to review new research papers about their disease.
“All quality research papers get reported to a government publication called PubMed,” Howie explained. “We’ve built a way to screen out the articles that the patients won’t understand or don’t need, and then for the remaining articles, we write laymen’s term summaries to make it so any reasonably informed person can understand it.”
When: For 15 years, Howie served as the head of global analytics for Merck, where he gained knowledge he is able to apply to MediFind.
What it means: According to the National Institutes of Health (NIH), there may be as many as 7,000 rare diseases that affect an estimated 25 to 30 million people living in America. For people like Howie’s brother Dennis, living with a rare disease can be a complicated journey laden with misinformation, misdiagnoses and missed opportunities to take advantage of the best treatment options available.
MediFind is using big data to reduce the amount of time patients and their families have to spend trying to find the best care. In helping patients to advocate for themselves, MediFind empowers patients to find experts, get second opinions, keep up with the latest medical advances, and stay informed about clinical trials, to get the best care available right now.
“It’s one-stop shopping, we let you check your symptoms, we give you a constant stream of new research all in one place, and we give you access to all the medical experts in the world,” Howie said. “Local experts sent my brother home and said, ‘There’s nothing else we can do,’ but there were global experts who had another option. And my brother was able to get two more years of life because we happened to know one of those global experts.”
Why it matters now: There are more than 1,800 clinical trials underway worldwide to discover treatments and vaccines for the coronavirus, COVID-19. The sheer volume of research can make it difficult for patients who contract the virus to know how to advocate for themselves. MediFind recently added COVID-19 to its platform, enabling patients to review basic information about the virus and find the latest advances, doctors and clinical trials. The site serves as a single resource for patients to make sure they receive the best coronavirus treatments available.