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Social media: The game changer

BY GUEST BLOGGER | MARCH 18, 2010

Almost 12 years past cancer, I'm in the best physical shape of my life. I've never felt better, had more energy, or intellectually felt so alive, yet at the same time been so discouraged by our country's inability to effectively tackle our collective health problem.

So I decided to change the channel. I signed on for the inaugural "SXSH Sharing. Exchanging. Social Health" event held on March 11 in Austin, an "unconference" that brought together an extraordinary group of social media/health care thinkers, enthusiasts, and leaders who talked about what can happen when social media and health care come together.

What a difference a day makes. Social media is stirring a level of change equivalent to the advent of the automobile in the last century. Just like the car changed life in the United States forever by providing people the ability to travel from place to place, social media makes it possible for different communities of individuals to exchange views and knowledge in real time. Right now. We no longer have to depend solely on our doctor or drive to the bookstore for critical information that may already be outdated. We can find what we need to know today.

Livestrong CEO Doug Ulman told the group that "social media will change the war on cancer and health care forever."

It already is, from institutions like the Mayo Clinic and National Cancer Institute exchanging tweets and information with followers to patients seeking input on the effects of chemotherapy.

In less than a year on Twitter, I've developed my own news network so I can monitor reports on cancer, patient advocacy groups, news, and literature, something that would be difficult to manage without social media. I talk to doctors, fellow survivors, writers, bloggers, and journalists. There's no way I could have met so many interesting people in such a short time through conventional means.

Another way of looking at social media's potential in addressing health care issues came from Greg Matthews, director of Humana's Innovation Center. Matthews says that "...the relationship revolution" created through social media will assist insurers in motivating people to change their lifestyle.

"I came to the realization that, as insurers, we are part of a sickness industry, as opposed to a health care industry," Matthews said. "So, one of our questions is how we engage people in healthy minded communities." When things we should do, like exercise, are transformed into something that's fun to do--via social media--then we can make significant steps toward disease prevention.

Given the current health of our population, the application of technology to move people to change is good news. But Humana's programs were just one aspect of the entire #SXSH dialogue. Even a week later, participants continue to write, discuss and elaborate on conversations initiated there. Social media accelerates ideas and good ideas accelerate change. So even if the actual number of those who physically attended was small--around 80--the idea avalanche is just beginning (for a fact recap, see http://reedsmith.posterous.com/a-week-after-recap-of-sxsh).

Some of the trends we'll see social media accelerate:

1) Patient driven
Social media provides cancer survivors a forum to have their concerns, problems, and questions heard, answered, and addressed. Jenn Texada of M.D. Anderson Cancer Center gave some incredible examples from her vantage point as M.D.A.'s Twitter "voice." More and more hospitals are beginning to use platforms like Twitter to address customer service issues.

2) Prevention, prevention, prevention
Doug Ulman also pointed out what many of us in the cancer arena already know, "it's about prevention. There is no one cure for cancer. Cancer is more than 400 different diseases." While we will see advances in treatments, the key will become the prevention of future disease.

3) Participatory Medicine
You can get real answers in real time. The more we, as health care consumers and advocates, learn and take responsibility for our own health, I can only believe that our health care will improve. While patients want their health care team to be accountable, we--in turn--need to do the same, and I don't mean financially. By this, I mean understanding and engaging in healthy behavior, preparing for appointments (do you keep a list of the vitamins and medications you take?), and keeping track of our records, tests, and results. And yes, electronic medical records will become a reality. To keep up-to-date on this topic follow @epatientDave at http://epatientdave.com/.

The "unconference" culture was the essential antidote I needed for a battery recharge. #SXSH is about the collective idea(s) and energy generated when ideas are shared among equals working on the same team. The experience moves, motivates, empowers, and engages everyone. Ideas flew like rockets throughout the day. I was welcomed like an old friend even though this is a new area to me, an attitude we can all carry to take on cancer wherever we are.

Note: #SXSH was organized by four individuals: Shwen Gwee (@shwen), Dana M. Lewis (@danamlewis), Reed Smith (@reedsmith), and Tom Stitt (@tstitt), who met through a virtual conversation held every Sunday evening about social media and health care. They met for the first time in Austin. Sponsors included St. David's HealthCare, MD2P.net, wegohealth, IMC health & wellness, and Vertex.

Jody Schoger is a writer and cancer advocate living in The Woodlands, Texas. She explores women's cancer news, information, and essays on her blog http://womenwcancer.blogspot.com. Follow her on Twitter: @jodyms.

To read more on how social media is changing the outlook for cancer patients, survivors, caregivers, and health care professionals, read "Friends in Need" from CURE's Spring 2010 issue.

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COMMENTS

great and informative post Jody! I love this line, "Given the current health of our population, the application of technology to move people to change is good news." Moving forward for our sakes and the sake of our country's policies is so important. Thanks for sharing your experience!
- Posted by Debbie Thomas 3/18/10 1:28 PM

It is wonderful that a group could come together like this to share their ideas in this way. I too am a huge advocate of the potential of social media to, as you say, change the game. Jody mentions LiveSTRONG CEO Doug Ullman in her excellent article, and indeed the Lance Armstrong Foundation is a perfect example of a non-profit harnessing the power of social media to spread awareness of a cause, disseminate information and attract volunteers and donors, not just on a local stage, but globally.
- Posted by Marie Ennis-O'Connor 3/19/10 10:58 AM

Jody, this is a very well written and interesting post! I agree that we as consumers need a shift in how we approach our health care. Personally I believe that many are comfortable with the current system we have and have not been empowered to think about patient driven care.

There have been things in my cancer journey that makes me go hum.... For example: "Doc how do you know 6 chemo treatments are the number for me?" Answer: "That is what the research proves." Question: "So doc how do we know if 5 treatments would not work as well." Answer: "There is no definate research to prove 5 are as good as 6."

Or here is another one: "Doc why do I have to take premeds before chemo? What if I don't need the Benedryl or Tylenol or Steroids that you want to give me? Why don't we try it without the extra drugs and if I need it then OK."

So I made my choice to not take any pre-meds because for me I believed what I read about the side effects would contribute to more side effects which were already enormus.

Please don't misunderstand me. I am not at all thinking I am a doctor, being disrespectful to the medical community nor am I giving any medical advice.

All I am saying is partner with me. I have lived in my body 55 years. Give me some credit for having a brain and I think I know my body better than you could because of my lengthy history with this body.

And then there is the cost of my medical care which I have been watching like a hawk. I could not believe that one session of my Chemo cost a whopping $12,000. It makes me think do incentives exist to push the meds on the consumer even though I may not need it. I don't know the answer to this but wonder. (By the way I did my chemo without premeds and made it through just fine.)

I wonder if the average American really believe that prevention is the way to go and are willing to put the effort into being healthy because you do have to work on it. Is it easier to go to the doctors and get a pill or drug to fix what ever is wrong?

Have the drug companies with all of the commercials on TV and the internet got us brain washed that drugs are the answer for everything? Is it possible that if we have too much prevention there would certainly be lots of income lost for some big business?

Anyways, just my two cents on a topic that is near and dear to my heart. Very thought provoking blogg I must say. Again Jodi thanks for the brain challenge!
- Posted by Luann Chevalier 3/19/10 7:25 PM

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