When you have a rare disorder, Dr Google and Dr Facebook are your friends. Now this is not the most medically-sound method of procuring medical information, but it is sometimes your only option.
As a member of a group of bloggers with chronic illnesses, I was invited to test out a new site for medical information for patients called MedNexus (www.mednexus.io). I’m always up for looking things up (seriously, I get paid to Google random stuff!) so thought I’d try it out.
I typed in Moebius syndrome… which my autocorrect decided to change to Mobius syndrome (incidentally, also correct and the spelling used in Europe). MedNexus found nothing under Mobius, which I thought was surprising. Went back to the search page and typed in Moebius syndrome. 
First of all, I love the interface of this site – nice pretty clean lines and visually appealing either on a mobile device or on a desktop. The first thing on the site under Moebius syndrome was a definition of Moebius mined from the National Organization for Rare Disorder’s information page, a very trusted source with good information: yay!
After that, however, things get a little dicey as far as relevance goes. It picked up 13 published research articles, but none of them were relevant actually. I keep up with new research articles so there is more research out there, it just wasn’t grabbed by this algorithm. The Ongoing Clinical Trials tab didn’t show the Natural History Study I just participated in – which is still listed on ClinicalTrials.gov as recruiting. And the forum posts tab was just… confusingly unrelated. It almost seemed like it was grabbing everything with syndrome in it even though I used quotation marks around the phrase.
So they get big points for using a trusted source for their main information page, but might need to tweak their algorithms a bit to weed out the unrelated information and grab what’s really important. I think they have the right ideas, and it should be interesting to see what comes of this idea.
Natalie Abbott 