The journey into the (officially scientific) exploration of healthcare social media would not be complete without a look into the realm of healthcare specific networking sites that I’ll playfully call “medicinal sites.” These are closed sites that are aimed exclusively for those with either a certain designation or disease state.
In today’s lineup, we will explore two specific sites. One of these sites is meant for physicians and the other is meant for patients.
Although Doximity was not mentioned in the University of British of Columbia study that spawned this blog series, I am going to start here for good reason. Although they are a relative newcomer to the space, Doximity has experienced very strong growth. Last year Doximity doubled their network to a total of 250,000 members, which is 25% of all physicians in the US. What I find fascinating about Doximity is that it was started by the AMA. It’s oftentimes the case that, in the David vs. Goliath world of social media, hip start ups are the ones that people want to follow. The AMA now finds themselves in a situation where they have more users of their social network than they do actual members.
Doximity does a few things right. It’s most popular features, beyond making upgrades that make the user interface more like Facebook or LinkedIn, include:
- An API that enables “Facebook Connect” for easy authentication
- A built in recruiting tool called Talent Finder
- A continuing medical education (CME) platform
- A “digital fax line” that allows physicians to receive their faxes (I know…don’t get me started) through their network via a personal fax number
PatientsLikeMe is a site where e-patients can collaborate with one another in a peer-to-peer supportive setting. The site was launched in 2004 by the family members of an architect that contracted amyotrophic lateral sclerosis (ALS) at the age of 29. They had originally raised millions, literally, in a failed attempt to find a cure for ALS. They also created this patient social network to go along with that effort.
PatientsLikeMe now has over 200,000 members with groups for approximately 1,800 disease states. The most popular networks are neurological diseases such as ALS, multiple sclerosis and Parkinson’s, but there has been growth in members with HIV/AIDs and mood disorders like anxiety and depression. Cancer, with its numerous subtypes, has been a more challenging group to tackle. I have found that these subtypes often form their own online patient communities. You can find a list of these on e-Patient Dave’s website, which I definitely recommend you visit if you want to learn more about how patients are using social in life altering ways.
One of the most incredible things about PatientsLikeMe is not as obvious. Let’s consider a typical patient journey: we get sick, we go to the doctor, the doctor captures data during that visit including family history, bloodwork, scans, biopsies, etc. Then there is the follow up appointment. Perhaps a follow up call by a nurse. But as I often say, that’s only 1% of the story. It is the other 99% of the time when that patient is out there in the real world that matters a lot. So, where do we get all of that data that takes place during the “meantime”. PatientsLikeMe is often heralded as the producer of the most compelling clinical data the health care industry has ever seen for this reason.
As compelling as this data may be, it’s only a speck of sand on the beach. There is far better data capture to be had by socially integrating patient and physician in a meaningful way. This takes me back. Way back. To a post I actually wrote in 2011. What I said then will be where I end here today:
“Patients are online. Physicians are online. However, these two groups are running in different social circles…this presents a true medical problem.”
