Hafsa Daher
Did you ever google a symptom you had hoping you would get an information whether it was a serious issue that requires a professional attention or a simple flu symptom?
But what if you have a rare genetic disease or a non-specific symptom and went to multiple specialists, spent thousands of dollars but still haven’t reached the right diagnosis.
Scrolling through Netflix, I recently came across Diagnosis, a medical mystery show that follows patients who are seeking a diagnosis for their rare conditions. The show helps these patients by crowdsourcing or enlisting the help of audiences from around the world that might identify the patient’s condition. The premise of the show is to see if the collective knowledge of a virtual community can compensate for the pitfalls of the traditional medical system.
Missed medical diagnoses are more common than most people think. In the USA alone, more than 1.2 million people get misdiagnosed each year and half of these misdiagnoses lead to life threatening consequences.
In order to avoid these mistakes programs like the, NIH Undiagnosed Diseases, were created to provide second opinions for these misdiagnosed cases. But since these programs have limitations like strict eligibility requirements & the need for referrals from specialists, a lot of people prefer to use CrowdMed, a crowdsourcing platform that combines the knowledge of medical professionals & people with firsthand experience to help reach the right diagnosis.
Patients describe their condition and upload their medical records to the website, then the “medical detectives” on the site provide their differential diagnoses which patient can then discuss with their respective doctor.
Upsides:
1. Access to experts outside of their reach.
Patients can be limited by what their insurance can cover or by the specialist they are referred to. Now they can have unlimited access to a large interdisciplinary team of medical professionals from all over the world.
2. Collaboration can lead to better results.
Studies show that collective diagnosis by a group of physicians was associated with higher accuracy (85.6%) over individual diagnosis (62.5%). Doctors from different disciplines might have seen a similar case & can easily know what the right diagnosis is but individual doctors can be biased or might have limited knowledge.
Downsides:
1. Ethical issues of social media usage and patient data privacy.
Voluntarily sharing your medical data on such platforms can enable scammers to impersonate you and get access to bank accounts, credit accounts, and even illegal drugs.
2. Wrong diagnosis and delay of treatment.
The credibility of these “medical detectives” should be taken into account. By crowdsourcing, you are enlisting the help of anyone, which could mean people that don’t have prior medical experience.
Medical treatment can be a collaborative global effort but we need to eliminate all the liabilities that can put the patients at risk. We need to create crowdsourcing platforms that are affordable, ensure better security and recruit trained experts only.
In a world where more than 300 million people suffer from rare diseases, getting the correct diagnosis can feel like a triumph for many patients. By knowing their medical condition, they can be on the path of figuring out how to treat their condition and how to adjust their life to get the most of it.
NOTE for readers: The medical show Diagnosis is based on the New York Times column by Dr. Lisa Sanders. I highly recommend that you wear your detective hat and see if you can solve the medical mysteries.
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