It was Mother’s Day, and Deborah Kogan posted a picture of her son sitting at the pediatrician’s office awaiting the diagnosis that he had strep. She was lightheartedly complaining that this was how she was spending her special day.
As the morning progressed, she posted more updates with more pictures, and her friends on the social network grew more concerned.
It sure didn’t look like strep.
Her four-year-old son’s eyes were swelling shut, his fever had skyrocketed, and he was looking terrible.
One of her friends saw the picture and immediately called Deborah to tell her to get her child to the hospital.
She’d seen this same thing before in her son. It wasn’t strep or scarlet fever or an allergic reaction. It was Kawasaki disease, a rare autoimmune disorder that attacks the coronary arteries.
If untreated, it could cause major damage to her son’s systems.
She checked her son into the hospital… and sure enough, the Facebook post may have saved her son’s life.
Facebook is rumored to be planning an official foray into the world of health care, and it seems like it’s a decision that makes a lot more sense than, say, its acquisition of virtual reality hardware maker Oculus.
For Your Health!
The reports say Facebook has been holding meetings with medical industry representatives and health care entrepreneurs. The result of these meetings might be increased research and development for health care apps, preventative care applications, or even health-centric support communities to connect patients.
It’s a rather broad rumor, but it would put Facebook alongside Apple and Google, who are both making strides into the health care tech space.
There’s also a clue about this move in Facebook’s board of directors.
Alongside all the tech magnates sits Susan Desmond-Hellman, who joined Facebook’s board in 2013. Desmond-Hellman was head of UCSF Medical Center’s strategy and operations, but shortly after joining Facebook’s board, she was named CEO of the Bill and Melinda Gates Foundation. She assumed her position in the foundation in May 2014.
She’s an oncologist by trade and formerly worked for biotech company Genentech.
Clearly, there was a sound reason to put Desmond-Hellman on the board last year. It seems we will soon find out what that reason was.
Social Medicine Success Stories
Like the Kawasaki disease story I mentioned earlier, social media is chock-full of this type of social lifesaving.
Reddit, which is less a social network and more a populist news message board, has many examples of how a broad pool of people can help inform and detect medical problems early.
The following is from a post on the subreddit “r/health” entitled “Reddit convinced me to see a doctor after reading about DVT’s…life saved!”
“I went to the doctor after reading a post on reddit, and was diagnosed with a DVT in my left calf and a small pulmonary embolism in my right lung. In fact, I am currently in the hospital wiring this up from my bed.
If not for Reddit, I may have attributed my inflamed calf muscle to joint pain that comes from my Crohn’s disease. I have had knee and leg issues for years, and probably would have tried to push through the pain and waited for the swelling to go down. It may have taken me much longer to see a doctor about it and, in hindsight, it might have killed me.”
There are a lot of examples like this. Users are inspired to check themselves after reading stories about a disease, and they end up catching symptoms early.
There are also examples of doctors seeing posts in their casual use of the site and having a similar positive impact.
But early detection isn’t all social media has been good for in the medical field. It’s also proven magical for fundraising.
You probably saw the ALS ice bucket challenge videos being shared on Facebook earlier this year. If not, you should probably move out from under your rock. These videos were viewed more than 10 billion times by more than 440 million people.
They drove one of the most successful viral fundraising campaigns of our age, raising more than $100 million for ALS (amyotrophic lateral sclerosis) research.
ALS research has been tapping social media for several years. In 2010, ALS patients used a different social network — PatientsLikeMe — to organize their own non-regulated clinical trials of lithium carbonate treatments. Patients did their own 12-month treatment study and found no effect of lithium on the progression of their disease.
While this was only an observational study and not a true clinical trial, the results the group found were similar to actual randomized clinical trials, suggesting that these types of self-driven studies might actually help accelerate the clinical discovery process.
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Fear and Money
The scary part of any Facebook-related project is how affects the privacy of users.
Companies have long been using Facebook posts to vet potential employees, treating unfavorable pictures and affiliations as strikes against hopeful applicants.
Likewise, advertisers comb our entire online lives to market to us more effectively. Demographic information like gender, race, age, education, and geographic location are all extremely valuable.
But the information we volunteer, like our political affiliations, check-ins at bars and restaurants we visit, and products we “like,” are solid gold.
There’s always the fear that insurance companies could see pictures of or references to alcohol, cigarette, or drug use in our profiles or see that we might have a penchant for greasy fast food and use that information to punish us in our coverage.
In 2012, Facebook even gave users the option to add whether or not they’re organ donors on their profiles. From the launch of the feature:
“Starting today, you can add that you’re an organ donor to your timeline, and share your story about when, where or why you decided to become a donor. If you’re not already registered with your state or national registry and want to be, you’ll find a link to the official donor registry there as well.
Facebook’s mission is simple: to make the world more open and connected. But the Facebook community has also shown us that simply through sharing and connecting, the world gets smaller and better. Even one individual can have an outsized impact on the challenges facing another, and on the world. At Facebook, we call that the power of friends.”
This is an otherwise intimate piece of information that is only valuable if you are facing your own demise.
Of course, it’s very valuable to health care providers. Data like this can be used for revolutionary new treatments, and it can also be monetized.
Our health data is just as valuable — if not more so — than our lifestyle data.
Facebook knows this.
Good Investing,
Tim Conneally
For the last seven years, Tim Conneally has covered the world of mobile and wireless technology, enterprise software, network hardware, and next generation consumer technology. Tim has previously written for long-running software news outlet Betanews and for financial media powerhouse Forbes.
