Posted on July 16th, 2012 by Admin
Editor's Note: Laura K. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
Gone are the days of patients sitting with hands folded in their lap, waiting for the doctor to share wisdom and advice for a particular condition. The interactive nature of Web 2.0 changed the landscape of medical care, unlocking the secrets of medical care and empowering patients to take the lead in their own care. My personal situation evolved about this same time – I had a heart attack in January 2008. I spent many hours on the Internet looking for an explanation of what had happened to me, since my event was listed as an MI due to vasospasm, but the root cause was never identified. That search led to a wonderful group of women who have a special relationship with Mayo Clinic – the WomenHeart forum on inspire.org. It was there that I was taught the power of medical knowledge, networking with others in similar situations and not being content to passively receive medical care. These women taught, modeled and prodded me into being my own advocate. I considered applying for the Science and Leadership Symposium, but that interest was sidelined when I was diagnosed with Multiple Sclerosis later that same year.
My “apprenticeship” with the WomenHeart sisters empowered me with the requisite tools and had me prepped and ready to jump into the MS world and embrace the collective power of the online community. It was a heart sister who sought out an MS forum for me, vetting the options out there, and her choice continues to be the intelligent online community I use as a sounding board, learning from the collective wisdom, and a place to add my voice to the conversations. I am active on the MS forum at MedHelp, and have been a community leader there since October 2008. I've tried to honor the schooling I had from WomenHeart, and pass that patient empowerment on to others living with this unpredictable chronic disease.
Where else can you find me online? I've joined other MS forums, I have many MS friends through different groups on Facebook, and read all of those sites to get a sense of what has the MS community buzzing; there is almost always a theme that crosses websites, demonstrating the inter-connectivity of our thoughts even though we may post at different URLs. At my blog, InsideMyStory.com, I share my experiences and thoughts in a creative way that I hope will be of use or inspiration to others. I have to confess that I am woefully inadequate with Twitter, though I do have an account - it seems there isn't enough time for me to stop and learn the nuances of tweeting, but I keep hoping that will change sometime soon. I followed the tweets from the Connecting Health Care & Social Media conference held this May in New York City, and it left me wishing I could attend this event in person rather than be a passive observer, and the upcoming conference in Rochester at the Mayo Clinic could fulfill that longing.
Patients who are active online need a better understanding of how the medical profession is impacted by social media - we know patients are not the only ones being empowered by this ability to share a thought and have it accessible to everyone. How else can you explain the popularity of physician blogs, such as KevinMD? What is it that doctors want us to know about the power unleashed by Medicine 2.0? There needs to be messengers who carry the thoughts of the doctors about this changing technology back to the patient communities.
At the Social Media Summit in Rochester, I can add to the discussion on how the physician/patient relationship is evolving due to the use of social media and the internet, as well as gather information to return to the MS community. Web 2.0 and Medicine 2.0 have changed health care, forever. The challenge is clear - it’s up to patients and physicians to find the common ground that makes this change work for everyone.
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