Healing Yourself Via YouTube: The Amazing and Frightening Future of Health Care

health care sxsw 2009

Social media is going to change the health-care industry just as radically as it changed entertainment, finance, and publishing. I know this to be true not because of any insider info or the research backing Chuck Salter's Doctor of the Future story in this month's issue. I know it's true because out of all the panels and conferences I've attended in the last two years, the session with the most passionate, activated and engaged participants in it was titled "Social Media and Health Care."

The organizers of SXSW had clearly underestimated the value of this rather boring sounding discussion, because the room was overflowing. Every inch of floor space was taken. The guys from the insurance company were standing near an EMT, and at his feet was a woman who had blogged about her hip replacement surgery. The mother of an autistic child is nearby Dr. Jay Parkinson from Hello Health; he's one of several physicians in the room.

Every debate about the future of medicine begins with privacy. And I'm not too optimistic when this one starts out the same way, because this particular debate sometimes never gets past this hurdle. But after a few minutes of back-and-forth about whether we'll trust our medical files to Google or Wal-Mart, the room seems to silently come to an agreement that the privacy issues will be overcome for one simple reason: the benefits of losing a little bit of your privacy will be so great as to outweigh the risks of doing so.

Then the room sparks to life. What if doctors were engaging with patients on a Facebook style platform? How about crowdsourcing data about new treatments? Where is the Mint.com of medicine? These all seem like such obvious outcomes, and yet they don't exist. The discussion moderator barely gets a word in now, Web site names pinballing around the tiny room along with each new idea. (I email all the links to my mother, a nurse practitioner, and tell her it may be time to quit her job.) Everyone here recognizes that there are certain inevitable changes taking place: Patients are becoming smarter and more connected to one another, and the current medical system is getting weaker. In the face of the technologies available today, there is little hope that the insurance industry can survive as we know it—and that doesn't bother anyone (except maybe the insurance guy).

Yet the risks of giving patients the Facebook treatment are also very real and present in this room. This is illustrated near the end of the discussion when Mike Bonifer, author of GameChangers – Improvisation for Business in the Networked World, tells his personal story about Benign Paroxysmal Positional Vertigo (BPPV). Bonifer had come down with the illness, which is not terribly serious, at the same time as his accountant. But the two had completely different experiences in treating the ailment.

The accountant used the existing health system to get cured—he went to a number of different specialists, and spent $6,000, to get everything sorted out. Bonifer Googled his symptoms for a few hours, and found a YouTube video of a treatment known as the Epley Maneuver. Then, in a move that will strike fear into the hearts of the insurance companies and malpractice-fearing physicians alike, he followed the instructions in the video and cured himself.

And in that anecdote is both the great hope and challenge facing the future of the health care. It's one that the doctors of the future will have to weigh carefully.

Read more about the Doctor of the Future
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  • Kevin Ohannessian

    Noah, I'm the woman at this panel who blogged about her hip replacement. I had the same reaction as you did to the clear amount of interest in social media for health care. But I also was amazed at Mike Bonifer's trust in the YouTube video. I don't know if I would have had the courage to go as far as he did. But I am very encouraged at the power of informed patients.

  • Noah Robischon

    Thanks everyone for your replies. Mike, there is a middle ground here, which I'm glad you acknowledge. My father, who also suffers from some form of BPPV, does tons of research online before visiting his doctors. He's an informed patient and that allows him to more easily navigate the healthcare maze--as Francine mentions above. Yet the doctors still tend to be very disconnected from him, and it's clear to me that this can be overcome with the technological tools we have available today.

  • MIke Bonifer

    Noah, thanks for the link. I would like to make a couple of things crystal clear about my self-diagnosis. If the information I'd found online had not aligned PERFECTLY with the symptoms I felt, especially at the very onset of the BPPV (a 'breaking away' feeling as crystals in the inner ear dislodge; also i was in a yoga class when it happened and there were many online citations of inversions, sometimes after yoga, as the trigger) AND if the Epley Maneuver had not been so simple and non-threatening (3 minutes, lie on a bed, change head positions every 30 seconds, sit up) I would not have attempted such a thing. Those two factors--alignment of online data with my symptoms; and an easy, non-invasive treatment--were key to my decision to self-diagnose and self-treat the BPPV. Otherwise, I'd probably have been at my doctor the next day, hoping like hell it wasn't a brain tumor.

    I agree with you about the excitement swirling around the room in that SXSW session. It was vertiginous in its own way! Here's my description of it on the GameChangers blog:


  • Dave Durenberger

    Noah - I truly appreciate your article and agree that we are in the midst of a global change in how we all receive and react to healthcare information. Where we were once satisfied with simply researching symptoms, diagnosis and treatment pathways as a means of informing ourselves to have an intellectual conversation with our physicians, our appetite has now grown to need more information that may not have reached publication in peer reviewed journals or passed the vetting if IRBs in research institutions. We are looking for the best way of quickly and accurately determining diagnosis and treatment opportunities specifically tailored for ourselves as individuals.

    The current social networking sites that allow people to communicate and develop relationships with those that share a common chronic disease state such as patientslikeme.com or weare.us are prime examples of how the management of healthcare is changing from the provider patient confidential “medical home” to a more open and public disease state clustering of people who have a desire to learn from one another on treatments that have worked best for that individual.

    While this an exciting new opportunity for those suffering from the diseases that have developed forums on these sites, there is currently nothing that takes all of this to the next level. One that will combine the epidemiological methodology of health related research in the traditional method and the social networking and treatment/outcomes sharing of the health 2.0 movement. However, there is a company currently developing this technology; the next generation of health information sharing. EpiHelp, a German start up company, http://epihelp.com/ is developing a website that will have the ability of aggregating and reporting epidemiological data based on user experience, not on claims data or hospital reporting data or any of the other traditionally reported healthcare data.

    Imagine having the ability to quickly review treatment options for disease states based on pre-qualified experiential data that would include co-morbidities and quality of life indicators as well as length of time to recovery among other data sets. EpiHelp is gearing up to be the next generation of health 2.0 and will have the ability to combine social networking with user experience outcomes data that will allow everyone globally, regardless of language, to make the best personal decision on all possible treatment opportunities that currently exist.

    It is amazing to me to see how privacy laws do not impact people’s ability or desire to share their health information in order to help others throughout the world achieve health and maintain health. With applications such as EpiHelp, this desire to share information on new treatments, existing treatments, or out of date treatment that may have found new life will change the way that patients choose their treatment as well as how health care delivery systems provide care decisions for treating their patients.