I was born with a rare disease that causes bones not to form properly making them very fragile and easily fractured. Growing up in Egypt with our medical system in pre-internet era made it harder to diagnose me correctly until I became 4 years old.
Fast forward 25 years, 20+ surgeries, and tens of fractures. I was watching a session by Andy Wiseman, the partner at USV ventures (I am an avid reader of Fred Wilson’s blog and a big fan). Andy was talking about one of their portfolio companies “Figure 1”. It is a medical photo sharing app for medical professionals where they can post pictures of patients or their reports (hiding the patient identity) and get immediate feedback from other doctors.
While I am not a medical professional, I wanted to see the app in action and searched for my case. I started reading the interactions and for example I learned that the types of my case are not sorted by severity but rather by when it was discovered.
Since my disease is rare, there is a bias in the medical community for not researching it, which is why in my opinion there isn’t much advancement with finding a cure.
Figure 1 would be great if the patient can be part of the doctor’s learning process. I don’t mind sharing my x-rays on the app. I already tried but it said uploading only allowed for medical professionals. I understand this is important to keep the platform as professional as possible and not slip into becoming a patient-doctor medical community.
However, I think allowing doctors to tag their patients upon their consent so that other doctors can reach out to the patient and ask questions. A disease doesn’t only affect the person body parts, but their whole life and the lives of their surrounding ones which is important learning for doctors.
I am always happy by what technology is making us capable of doing. I wished this app existed when I was getting fractured and no one knew what I had.