Big Data, Health and WedMD

Well, I’m home from my trip to California to attend a conference on atrophic macular degeneration as a science writer.  The experience was unlike anything I’ve ever done before, I must say, but at the end of it all I found myself stepping back from all of the medical and scientific jargon and thinking about the big picture.  Atrophic macular degeneration is the biggest cause of blindness in people over 50.  That being said, studying the eye causes a significant challenge for researchers, as it’s next to impossible to take a biopsy from the eye as is possible when studying other tissues.

I sat in a room for three days with the genetics groups as they plotted their course for finding further evidence of the genetic risk of atrophic macular degeneration.  Approximately 50 percent of the genetic risk factors are known, thanks to recent findings in research, but geneticists are struggling to pin down the rest of this risk  because the tissue is difficult to get a hold of immediately following a patient’s death and the remaining genetic risk factors are likely to be rare and varying, requiring a larger collection of population data to find any sort of genetic pattern.  The solution?  My group suggested an eye tissue bank as a means for collaboration with other research studies to collect an aggregate of genetic knowledge about AMD that will hopefully show patterns in genetics to help locate the rest of the genetic risk.

So…what’s the big deal?  They’re using all of this data to find a cure for this disease.  And it got me thinking about the future of big data and healthcare.  I’ve been assigned WebMD as my company and while I’m up to the challenge, it certainly seems like a murky subject.  Thanks to regulations protecting patient data, connecting this data socially via Facebook seems to have created a particularly tricky position for companies like WebMD. There’s no Facebook Connect option with the WebMD website. And they reached 100,000 Facebook fans today, despite being one of the top health websites.

They recently released a very popular app for the iPhone called WebMD baby. And they do have personalized health record keeping and a weight loss and food tracker with a WebMD account.

The Washington Post had this to say about the future of healthcare and big data. It seems that no one has been able to crack the code in terms of getting people to participate who are both healthy and combating an illness, an issue that can be problematic if you’re trying to analyze data for replicable use in science.

The frictionless approach of Facebook, at least for WebMD, could prove to be useful, at least in terms of health and wellness at a preventative level.  I’ve been thinking about the possibilities.  How can people’s actions and reading preferences be used in a way that is both useful and helpful to them, without necessarily advertising embarrassing or otherwise private health conditions to all of your friends?  With the new action settings, does Facebook have the potential to monitor your healthy and unhealthy actions based on status updates.

Say you post a status update about your lack of sleep, over-consumption of coffee and general stress from grad school. (That’s every other Facebook status for me.)  If I were WebMD, I could refer you to articles that provide basic information on how to combat stress in a healthy way, the health effects of not getting enough sleep or the negative or positive effects of drinking lots of coffee.  WebMD has a treasure trove of health information at hand, and while much of that content is there ready for a user to find it, a lot of people go to WebMD to use the symptom checker when they have a cold or to seek out further information if they’ve recently been diagnosed with a disease. This would provide personalized content based on your reading habits.

But what if WebMD could keep you on track for staying healthy and give you recommendations based on your actions to help you live a more healthful life.  Would this work?  Would people use it?  I don’t know.  But it would A. give the user a benefit of better health information and B. give WebMD more hits on its website, which results in better leverage to attract advertisers.

WebMD isn’t selling the company anymore, so that’s somewhat positive news.

However, I’m not entirely sure that using Facebook is a solution for WebMD beyond preventative information.  Big Data, it seems, is the wave of the future for healthcare, as genomic data and medical histories are aggregated and used to provide personalized medical care based on genetic risk, etc. People sharing their medical histories and genetic data via social media, for me at least, is the ultimate line for the creep factor.

Incorporating something like this new NYT project could be useful for preventative medicine and WebMD perhaps. Imagine having some sort of facebook app that allows you to set health goals, allows the WebMD app to monitor your actions, likes, and readings and then gives you personalized recommendations on healthier actions, or different scientific-data related stories to provide a differing perspective on health based on some other health article you read (science is, afterall, written in pencil, not pen).

Looking forward to feedback from anyone here.  I’d give WebMD access to my habits in exchange for a preventative medicine  Personal Health Coach, so to speak.  Would you?  Let me know your thoughts and comments please.  Sorry for the long post.  It helps to type all of these thoughts out.

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