Consider the experience of Rob Long, a veteran writer and sitcom producer, as described in his weekly radio commentary on KCRW a few years ago:

Two weeks ago, I found myself in the office of a hematologist — which is a word they use because the other word is “oncologist” — and he was giving me some alarming possible outcomes about a series of blood tests I was tricked into allowing (my feeling is no tests means no bad news) and he left to get the results and he looked down at my iPad and he pointed to it and said, “Promise me you’re not going to get on the internet while I get your results.”

“OK,” I said.

“No, seriously.  Right now, Google is not your friend.”  

“OK,” I said.  “I won’t go on the internet.”  

And he left the room and I immediately went on the internet and for twenty terrifying minutes I Googled all of the terms and possibilities he had just described to me.  And the result was that in just twenty minutes I went from a guy who had a couple of odd blood irregularities he was checking out, to a guy who was hoping, based on twenty minutes of Googling, that he had a certain kind of leukemia that doesn’t kill you right away and apparently that there’s a pill for.  

I mean that was the best option I could identify on Google.  I was hoping… for leukemia.  My fingers were crossed… for leukemia.  

“You went on the internet, didn’t you?” the doctor said as he came back with some preliminary results to find me staring, slack-jawed, into space.  And then he told me that the initial tests were OK but he still wanted to do a few more, including one with the alarming words “bone,” and “marrow,” and “biopsy” and I guess I’ll be doing those this week, but my new attitude is that Google is not my friend.  

The good news is that, the last I checked, Rob is fine. But my first point in relating the story is that there are few fields where expertise is more consequential than in health care. Google-assisted self-diagnoses can easily do more harm than good, although that doesn’t mean that all online medical resources are bad.  I’ll elaborate on that in a minute.

My second point is that the impulse to understand what our bodies are experiencing is very human, and I sense that doctors now see it’s inevitable that most patients will (a) come to an examination with some ideas — many of them scary — about what ails them; and (b) follow the examination with their own online research about what it all means.  

This is generally good.  Research has shown that more online patient involvement at providers like Palo Alto Medical Foundation result in a 90% satisfaction rate among both patients and physicians. Even better, online communities organized around a disease state, like Healthline, now allow patients to take it further by sharing best practices — recipes for diabetics, tips on getting through chemo, resources for lower-income patients — and shining a spotlight on prevention and wellness.  

But what really makes me excited is how patient communities enable personalized medicine.  Our “quantifiable selves" are already helping UCSF collect FitBit data from a patient community and use that to tailor treatment for at-risk cardiac patients. And that’s just for starters. UCSF’s Center for Digital Innovation is looking to use Salesforce Communities to combine Big Data and Social Intelligence for the next Framingham Study targeting Alzheimer’s.  Communities is a great fit for this because it handles big data sets really well, is great on mobile and deploys in weeks or even days. 

So while pulling up a search engine in the middle of a doctor’s appointment may not be the best idea, going online afterward can result in tangibly better outcomes — for you and others like you.

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