Can Amateur Online Video Power Health Community?
I’ve been saying for years that I’d trust 100 patients’ diagnosis and recommendations over one doctor’s. It’s the power of the masses: a large set of less educated opinions are more likely to be informative than one educated professional. As an example, I posted a video last night called “5Ks are brutal,” and described some symptoms I’ve had with my back and leg (fast forward to 1:50 to hear how I describe my pain and tingling in one leg).
Within 10 minutes of my hitting “upload,” someone suggested it might be Sciatica (see Wikipedia entry, which itself is a collective explanation and not necessarily informed by medical professionals). As of now, there are several hundred comments, and a few others agree it could be sciatica.
I found this comment fascinating because I think bohogirl1, a total stranger, helped save me weeks of misdiagnoses- and her response arrived almost instantly. I do find my doctor to be largely informed (she’s seen here in this parody, where she was good enough to pretend to diagnose me with “video virus.” But I’ve been experiencing these symptoms for more than a month, and haven’t felt compelled to visit her… it’s time off work, a co-payment and I’m likely to get the “HMO runaround.”
Clearly this wouldn’t work if nobody was watching my videos, and it’s not very sustainable. I doubt many would subscribe to a YouTube channel of random patients complaining about inexplicable medical symptoms — much less offer free diagnosis. But I do think that online-video will power health care communities. Already we’ve seen communities form around medical conditions — especially severe ones like breast cancer, Alzheimer’s, or mental illnesses (see crazymeds.us for some collective experiences related to pharmaceutical treatments related to depression, anxiety and other neurological ailments).
Steve Case, co-founder of AOL and now Revolution Health, has indicated that as co-pays rise and consumer-directed healthplans push costs to consumers, patients are likely to become more informed and seek out other patients for efficient coping with illnesses. When I had a family member diagnosed with cancer, the second thing I did (after surfing the credible sites about cancer) was look for people that had experienced his rare type of cancer… to find out what to expect in treatment and recovery.
I struggle with exactly how video and health community will collide. I would imagine that if community forms around medical illnesses, people will want to exchange stories and advice in a more personalized way… and video is the most visceral means for this. That said, most online-video consumption is related to news, humor and sex. So this will be long-tail stuff. Yet certainly more profound.
When I first got Hank’s diagnosis, I spent quite a bit of time looking at fetal alcohol webpages and was in deep despair after two days. When I spoke to one of the original nurses who had evaluated hank when we returned home, the first thing she said to me was “stay off the internet. That stuff is extreme and will scare the bejesus out of you.” So mostly I don’t do that anymore.
I do use it to find other people with similar experiences though, and lately I’ve been looking at alzheimer’s information as well.You just have to remember – the information is only as good as its source. I usually go to webmd or the mayo clinic website first for definitive information, then surf around for other stuff to get anecdotal evidence and see if others are experiencing the same things I’m seeing.
P.S. I knew it was sciatica as soon as you described it. Good luck getting treatment for it from an HMO. It took me years to get over mine, no thanks to those bastards.
I was listening to NPR a few months back and they had a guest doctor, can’t remember his name, this guy said he welcomed patients searching the net about their illnesses, and sometimes his patients told him what would have taken a battery of tests to figure out. One woman actually saved her own life by researching her symptoms on the net. So he encouraged it’s use.
This same program also had a segment regarding a study done on accuracy and conditions when using Google to diagnose a medical issues. Google’s score was very high, somewhere in the upper ninety percentile I think. So the net is a great source of information and saves people a ton of time and money, however, people probably still should consult their doctor who doesn’t have time to keep up with all the latest and greatest..
One thing I remember from a class I took a few years back.. the best way for anyone to deal with a particular problem or illness is to talk to others who have gone through a similar situation. Most medical clinics or universities that reserach particuar problems have forums where people can discuss isolated issues. It’s all out there!
Knowledge is indeed power.
– Net Neutrality!