Molecularist

I was at SXSW last week and sat in on some seminars and conversations that I found particularly intersting.

One session was a "conversation," held in a small room where most of the folks sat on the floor. It was packed and the discussion was excellent.

Titled "Social Networking in Health: e-Patients, Data & Privacy," it was a discussion around the use of social networking services by doctors, patients, and the curious. The use of social networks in health raises all sorts of questions of privacy and secutrity and also questions some social assumptions and the like.

I took some notes (by no means comprehensive) and will try to put them in some sort of order below.

Privace and electronic records
The discussion started on some of the dark aspects of social sharing online. The worry was whether services that revolve around health should be a walled garden (though folks knew that the assurance was only so good, leaks happen). The worry is what happens when the discussion of the illness gets caught by employers, say, talking about dealing with depression.

There is a strong regulation called HIPAA, which I was told is all-encompassing, yet based on common sense, to protect patients and their electronic data. And there's no escaping the move to everything related to our health being digital. Having all confidential information digital is not new, as data warehousing of claims clearances already has put our health info in digital format. Also, users are driving electronic records for safety in drug interactions, for ease of managing, for portability. And when patients do participate in social networking services, they are not naïve, they usually know what they are posting
and to where and the reputation of the site they are posting on.

The irony, someone mentioned, was that the main theft of records is actually physicaly based. But there is the perception that paper is secure, since usually they are in one place or contained, and it's through electronic records that a lot of celebrity leaks happen.

Health discussions
Fortunately, the discussion veered away from the usual hand-wringing about privacy and started to hone in on the value of social networking for patients and doctors. There were indeed a few people in the audience who were working on such systems, many of them hospitals or doctors.

While so much of medical data is related to Health Records, the feeling is that Social Media is a much smaller area in Health. Using Social Media for discussion is no different than normal life. [Though I think digital forwarding as a huge challenge – who owns what
someone can forward?] Sharing online helps ease patients' anxieties around their illness or a procedure, learning from another patient's perspective. And promoting social conversations around illnesses leads to awareness, prevention, and even money savings for the patient.

A lady who runs a discussion site suggests that there has been a change in culture about what can and is being discussed. Also, younger folks are more comfortable sharing online. There was a feeling, too, that with all the churning during this economic crisis, that employers will be more lenient and understanding (though someone did raise the specter of a WalMart "understanding").

There are employment protections for some psychiatric illnesses and genetic information. Folks mused if this legislation could be extended to cover more diseases, to protect against discrimination against diseases. But there are also local cultural issues, as a lady from Brasil mentioned, things like dealing with faith and fatalism with respect to illness and health.

Finally, while folks thought there was good discussion between patients and between patients and doctors, there seemed to be no discussion between pharmaceutical companies and patients, most likely due to perceived liabilities. This was viewed as a bad situation.

What's out there
Lots of services were mentioned through the course of the discussion, so I'll list the ones I captured.

– Google Health
– Microsoft HealthVault
– Facebook causes
– Patients like me
– Hello Health – This sevice provides for doctor-doctor and doctor-patient discussion. With the service the doctor shares videos and bookmarks with patients. Interesting thing is that to register, ou first need to have a face to face meeting with the doctor.  
– Truesera – Billed as "connecting patients to enlightened doctors and facilitating doctors to get involvedself." The service became self–correcting (in terms of the facts of the discussions) after passing critical mass. That suggests that one could create a useful resource with factual information (much like Wikipedia, which leads me to wonder if there is a Wikipedia for Health)