January 27, 2014
Your Health, Crowdsourced
You're all familiar with my face. Not in the abstract, been-around-the-internet-for-ten-years sense but in the holy-crap-my-face-is-afflicted, very specific sense. But this isn't about that, not about the forced beard grown, steroids, antibiotics or general angst of not knowing what's going on. This is about apps.
When I'm in Monkeytown looking for a good restaurant, I grab my phone and use Yelp. I recognize that the motivation behind looking for restaurants is sometimes skewed. People feel strongly that the food was great or strongly that the service was abhorrent and there's rarely a middle ground. But the law of averages is at play and I put a certain amount of trust in the law of averages.
On the road I use Waze. It's a pretty cool map app that tells you where traffic jams are, informs you about hazards in the road and warns you about police. It's totally driven by its user-base, a community coming together to inform.
I'm a committed Amazon user and find myself making quite a few of my decisions based on user reviews and recommendations. They are, for the most part, correct. And often not what I would have decided for myself.
In short, while it's important to make your own decisions based on gut, what you think is right and wrong, and personal preference, there's a wisdom to crowds that's hard to ignore.
When I first started dealing with this face thing I did something very stupid. I got online and consulted Doctor Google, M.D. I quickly learned that I had every imaginable disease. If the internet was to be trusted, I had lyme disease, lupus, shingles, folliculitis, MRSA, herpes, contact dermatitis, strep...and cancer. Because every online diagnosis eventually ends with cancer. I don't want to denigrate online medical resources but the problem is that there's simply no intelligence put to them. The wisdom of Yelp, the road-testedness of Waze and the user experience of Amazon doesn't exist. It's information, out there, for consumption. But no intelligence.
I am absolutely certain that there's room in the online world for resources that help you - and people like me who have no earthly idea what's wrong with them - crowdsource their health.
How do you channel individuals' health experience into meaningful information and actions that can help another individual on the other side of the world, the state, your town? I have no idea but I'm willing to listen.
All it would take for me to feel better is for one person to say yeah, I've had that and I know exactly what it is. That would be more valuable than all the blood draws, all the tests, all the steroids, all the antibiotics, and all the many months of uncertainty I've seen. And I can't imagine how important it would be to someone who has actual problems, not just a weird face thing but missing limbs, terminal liver failure, or cancer. How would it feel to them to feel identified with? And how good would it feel to be able to help them figure out what's wrong.
I don't know the answer. I'm not an app designer, a doctor or a sociologist. But I know this is a good idea.
Posted by Chris at January 27, 2014 7:56 AM
I can suggest one community where you might get an answer - Ask Metafilter. It's $5 one time to join for life, and asking "what the hell do I have" there might yield some help.
I can see how this could help someone like you, but I think it can also become a nightmare for doctors who suddenly have this influx of people insisting that they have something a complete, unqualified stranger has diagnosed them with.
I know in your situation it might be difficult to accept, but in a vast majority of cases, doctors can correctly diagnose issues and remedy them.
(I think there was actually an episode of House dealing with something like this)
Good old fashioned word of mouth helps choose a doc in my city. Yelp helps. Bu tI agree and think mainly of toddlerplanet ....the mommy blog from the late Susan Niebur. When she had breast cancer, particularly a rare, weird, aggressive form she shouted it from the rooftops and many a mommy in many a city went to the doc instead of ignoring something dangerous. Crowd source it- absofrickinglutely. The CDC does this with flu trackers. Why don't we have all kinds of weird health trackers? I'm in.
I'm a masters student in nutrition, so my response is biased. Autoimmune disorders often surface when people are under stress, like changing jobs. Good stress or bad stress, the body reacts the same way. If you came to see me in clinic the first thing I'd tell you is to go gluten- and dairy-free for at least two weeks, preferably a month. Gluten and dairy are very inflammatory and irritating to the system. It's the easiest thing you can do nutritionally and you don't need a doctor to do it. You still won't know what's wrong, but if it helps you won't suffer while you sort things out. Unfortunately, gluten-free = no beer. Email me if you have any questions.
This was a very good thought provoking post.
I have a rare condition, called achalasia. The nerves in the esophageal stop working, and people have difficulty swallowing. Difficulty swallowing is a very general symptom and as you so aptly pointed out, when you self-search a vague problem, all roads lead to cancer. Eventually, a doctor figured it out and treated it.
Today, I belong to a mailing list for people with this condition. The mailing list is a wonderful resource in how to get it treated, where to find great doctors, and how to cope. Once you figure out the problem, the Internet is great.
But I don't think you can crowdsource undiagnosed medical conditions in a meaningful or accurate way. Most illnesses and conditions are too vague, and there's always a long list of possibilities.
In self-diagnosis, I also suspect that there's also a strong psychological yin/yang bias at work that makes an objective evaluation next to impossible. You either convince yourself that you are terminal, or it's nothing. In this case, all roads lead to beer.
Today, I avoid using Google to try to self diagnosis something because I've been down that path and know how it ends.
My mother has a red rash on her face and it gets worse when she is in the sun. The doctors have ruled out many things and have tried many creams. They think it is an allergy to something, but they are not sure what. Avoiding the sun does help, but I doubt it's the same thing. I just thought I'd share that story so you know you are not alone. It has been going on for 2 years without answer and my mother doesn't have the ability to cover it up with a beard.
I found your site and this post searching "crowdsourced medicine"... this other site popped up that sounds like what you are describing: http://www.crowdmed.com
I've done the same thing. And honestly, sometimes I think the docs are doing the same thing. Tested for CF (um, I'm in my 30's?) and lupus and allergies and and and... I'm still sick with nothing really pinging any tests. So, much like you, I gets my non-diagnosis, and I takes my steroids. Hugs.
Funny you mention this. I was diagnosed with a very rare type of kidney disease several years ago, and found Dr. Google to be both frightening and lacking in the info I wanted to know..,usually on a much more personal level about how the disease affects ones life on a daily basis. Long story short, I started a Favcebook group. It was the first for this particular disease that focused on a very particular demographic. I've got 150+ members in my private group! from all over the world. I've found support and sanity here, as well as info on new drugs to try. Granted, I also have a diagnosis, which you are sorely lacking. I only mention this group because I consider it crowd sourced healthcare for me.
I have a friend who had a similar experience because she picked up something while traveling but didn't show symptoms until she got home. It was so the exotic that it had the locals here stumped. So badly that they almost killed her. What saved her is going to UAMS. That's a teaching hospital here in our state with an international reputation for awesome. That would be my next shot, if you haven't already tried that. Find a place full of new fresh doctors. I'm not saying all doctors become stale in their thinking after years in practice. But you can imagine that fresh eyes could be key to an unusual case. Good luck.