Heard of this while talking about education by Personal Inquiry and Inquiry Guides.
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.
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)
Yes, after 8 years living and working in Finland with Nokia, I've decided to leave (my last official day is a few months away, though).
Sure, some of you who know me well know that I have been toying with the idea for a long time, but this time we're committed to a move and have put things in motion that will make this happen. We realized that if we didn't commit and "just do it," then we would be toying with the idea for many more years.
Of course, I am publicly discussing this, since this might open up opportunities for me, ones that I might not have been given had everyone thought I was a Nokia lifer.
Areas that most interest me now are continuing my PR and marketing work, but in different areas other than consumer electronics; doing something around molecular biology or biochemistry, such as synthbio or personal genomics; or building Web services (that might sound random, but it crops up everywhere my mind wanders).
I have a bunch of threads I am following, all very interesting. And I have a long list of things I can do if any of those threads die out. I have been very excited in the past 6 months about things that are happening around me and feel that it's a great time to start something new - a new company, a new project, a new direction.
Geography and new adventures are also big motivators in the change. We're looking to move to the US, preferably Boston or San Francisco areas, or London (three hot-spots for the the things I want to do).
Am I nuts? Nah. I know that the world is in its biggest slump in since the Depression. I know a ton of folks who have lost their jobs. But I have made an assessment of the folks I know, the opportunities I currently am chasing, and the skills and experience I have and concluded that I can weather this storm and be ready for the big growth times that are sure to follow.
Image from C.P.Storm
As you can tell, I've been writing more and more about science, biochemistry, medicine, and the like. I've moved most of my mobile industry writing to Nokia Conversations, the corporate blog I run for Nokia (for now; more on that later).
Suspecting that I will be writing less things related to what I've been writing about in the past 5 years, I decided to change the name of this site to Molecularist, a name I came up with to describe a person who fiddles with molecules, such as proteins and nucleic acids, much as I did before I jumped into the world of wireless, and much like I've been hanckering to do for the past year or so (and more on that later, too, I hope).
So update your bookmarks and feeds. If you want to. I would hope you'd keep reading me, just to stretch your mind (or to get it off the usual mobile stuff you have normaly read hear).
BTW, there will still be talk of Web services, since lots of the science I've been thinking of intersects with the future of the Web and social networking and other interesting stuff. Also, by finally getting my own domain name, if I ever get tired of TypePad (upon which this site runs) it'll be easier to move (but, after a persuasive talk with Sippey, I'm sticking for another year at least).
Image from EraPhernaliaVintage
(of course, I'll be changing other things around here to reflect all this)
"The 31-year-old ex-computer programmer and now biohacker is working on modifying jellyfish genes and adding them to yoghurt to detect the toxic chemical melamine, which was found in baby milk in China last year after causing a number of deaths, and kidney damage to thousands of infants. Her idea is to engineer yoghurt so that in the presence of the toxin it turns fluorescent green, warning the producer that the food is contaminated. If her experiment is successful, she will release the design into the public domain."
This is amazing. I know folks battling for Open Access in science for over 10 years. Even with heavy hitters, such as Harold Varmus, PubMed, and others supporting Open Access, status quo still dominates the science publishing industry.
Now, Peter Suber reports that the MIT faculty has voted unanimously to give the university nonexclusive, irrevocable, paid-up, worldwide license for all scholarly articles, which the university will then make available through an Open Access directory.
Might this be the tipping point for Open Access? As I see newspapers sinking while holding onto their 20th century biz models, might the big science paper publishers wake up to this change in their world (ten years coming, mind you).*
I'll be giving a talk next week about the future of publishing. Let's see what folks say.
[via @perryhewitt] Peter Suber, Open Access News:
Hal Abelson's [MIT faculty member] 'comments:
I chaired the committee that drafted the resolution and led faculty discussions on it throughout the fall. So I’m particularly gratified that the vote was unanimously in favor. In the words of MIT Faculty Chair Bish Sanyal, the vote is “a signal to the world that we speak in a unified voice; that what we value is the free flow of ideas.”
*BioMedCentral showed that even the old model could work in Open Access, such that they got bought out by Springer.