by David Ellis & Julian Bond

It’s a bit odd that we would choose for our “Health Future of 2009” a topic we didn’t actually write much about in 2009: Social networking or, more specifically, sociomedical networking, if we may coin a phrase. It crept up on us. It’s only when you look back… and then of course forwards… that you realize the topic’s significance.One reason we didn’t write much about it during the year is that it’s a broad and amorphous concept; not crisp and concrete like a bionic eye or a stem cell cure for a diseased organ or a genetic therapy to prevent diabetes. But the impacts of sociomedical networking are likely to be at least as far reaching, and indeed, it may even accelerate the arrival of those other wonders by catalyzing medical research and speeding up the clinical trials process.Sociomedical networking will provide affordable (and often free) access to healthcare for tens of millions of Americans who currently lack it, and millions who will continue to lack it if the health reform package going through congress fails to include a “public option.” Even those who have some form of health insurance will have better access to care through sociomedical networks, which provide more choice and higher quality care than a health insurance plan alone can provide.

Facebook for Healthcare

In 2006, Molly Joel Coye wrote about a future involving “virtual villages” populated by “health care professionals, support groups, care coordinators, friends and distant family, Web-enabled care plans, personal health records (PHR), electronic diaries and transitional care models…” a sort-of “Facebook for Seniors,” she wrote.[i] By “shap[ing] consumers’ understanding of their own health and their expectations for health information and clinical services,” social networks would “foster behavioral change.”

Her term “virtual village” never caught on, but what Coye describes is really a model for a very advanced form of sociomedical network. PatientsLikeMe (“PLM”) is one example of a network taking us toward Coye’s vision. A member of PLM’s “Mood Conditions Community” (a sub-group including for example bipolar patients) says “The whole point of PLM is sharing, changing the paradigm of medicine where everything is private [to one where personal medical data are public], learning from each other and contributing to research into our particular conditions…so that others…may also benefit.” PLM has undoubtedly caused some patients to change their behavior at least in terms of how they manage their disease.

The message is that social networking has already begun to have an impact on healthcare, and it is growing.


One might reasonably think that “empowered, engaged, equipped, enabled, and educated about [medical] evidence” describes a doctor. But today, that description just as well applies to the PLM user, or the user of any other sociomedical network. The description was provided at the first annual “e-Patient Connections” conference held last October in Philadelphia, by self-styled “e-patient Dave” deBronkart. e-Patient Dave is a cancer survivor who attributes his against-the-odds survival to knowledge he sought and found on the Internet. He said the “rise of the e-patient” was just part of the growing consumer use of the Internet “in every area of life… from car research to buying books online. It’s not just about being online, it’s about being empowered.”

Some sociomedical networks have been formed by e-patients around specific conditions, such as diabetes. Kerri Sparling, author and creator of one of the first and most widely-read blogs about diabetes (“Six Until Me”) told the conference that sociomedical networks should be used as an adjunct to regular doctor visits. They enable patients to share “real-life” experience about their health conditions. She noted that while doctors of course are needed for medical information, medical advice, and tests, the patient community provides “real-life” personal health information. “Like with diabetes: If a doctor gives one an insulin pump, some patients may come to my blog to ask others questions like ‘Where exactly do you wear the insulin pump during moments of intimacy or when you’re at the beach?’…more like real life questions instead of the standard doctor information.”

An e-patient, she suggested, is someone who does more than just visit sites such as WebMD and search engines for health and medical information. “I was sick and tired of literally going online googling diabetes and finding nothing but reasons why I could die,” she said. “I really wanted to find people [with diabetes] who were alive, living real lives, and were happy…. And luckily I was right in thinking that [such] people were out there because I’ve talked to over 1000 [of them] so far from my blog.”

Besides blogs, social networks based on other tools such as Twitter are rapidly becoming popular venues for discussions about healthcare. The weekly Twitter chat “Healthcare Communications in Social Media” (“#HCSM” to Twitter users) boasts a community of over 1,500 healthcare communications professionals who explore how healthcare is communicated through emerging online communities. Dana Lewis, #HCSM’s creator and moderator, believes that Twitter is more accessible than blogs, with fewer barriers. “With a blog, you would have to know it exists or be led there,” she said. “With the hashtag [i.e., #HCSM] you could stumble across it and be a lawyer, doctor, hospital marketer, or college student. You can be involved in the chat no matter who you are, which in turn breaks down any possible geographical or social barriers one may have.”

Are Sociomedical Networks Trustworthy?

Some rightly question whether the information being exchanged in sociomedical media is reliable and legitimate. At the e-Patient Connections conference, one of the most talked-about presentations was “A Tale of Two e-Patients” by Dr. Val Jones, CEO of Better Health. She contrasted two real e-patients—one who lived through colon cancer because she found her way in to a clinical trial of a new drug through a reliable and legitimate network, and one who died tragically, needlessly, because she relied on the advice of a network of “holistic” healers who apparently did not know that this patient’s breast cancer was curable if treated—medically—early enough. There was no medic in that social network.

Nor was there a hospital, but today there could well be one. Ed Bennett, who tracks these things, counted1,049 hospitals using social media—blogs, Facebook, Twitter, YouTube, etc.—at the end of 2009, compared to only 161 a year earlier.

Facebook for Mutants (Me and You!)

Alex Khomenko, the head of software engineering at personal genome analysis company 23andMe, told us at the e-patients conference that future sociomedical networks will combine: The engaged patient, patient data collected in real-time and integrated with genomic research data, and a clinician who can put it all together.

23andMe’s own forums represent a step in that direction; that is to say, the direction of social networking based on people’s genomic mutations, towards patient driven research, and towards the advanced form of sociomedical network Molly Coye wrote about in 2006. Khomenko believes we are overdue for a big leap in that direction. Social networking, he points out, has been around for a while, and everybody is now just copying everybody else.

He sees an opportunity (indeed, a dire need) to dramatically speed up clinical trials by having engaged participants who are willing to take more risks because they are fully informed and they consent. How do they get informed, and where do they consent? In part, through sociomedical networks.

What’s Next?

We expect to see sociomedical networks begin to be rated for reliability and legitimacy. The market will do that to a large extent. There could be an argument for some kind of regulation, but we think it would be tenuous.

We expect to see much more machine intelligence within sociomedical networks. With networked home genetic test kits, a breast cancer could be diagnosed and an evidence-based, personalized therapy prescribed without need for a human in the loop—except, of course, for the e-patient herself.

And finally, we expect to see all of this happen mainly through a cellphone, and perhaps for some, via “fully integrated social TV systems,” the first of which “will be available to consumers later this year” according to Erika Jonietz of Technology Review. With this year also marking the debut of mass-market 3D TV, sociomedical networking could gain a whole new dimension.

But the cellphone is where the real action is already well under way. There are hundreds of medical apps available for the iPhone (and no doubt Google’s Android phone and others will soon be able to make the same boast) and there is a growing number of personal medical devices (such as a glucometer) able to communicate wirelessly and autonomously with the cellphone and, through the cellphone, with the machine intelligence residing in the sociomedical network.


All the best for 2010.



David and Julian


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