Patients are turning to the Internet and Social Media to find solutions to health problems when their doctors don’t know the answers. While some docs are overwhelmed with new literature about medical advancements and resent patients who question their advice, others welcome the self-educated patient who has found treatment alternatives online and wants to discuss them. If you’re one of those e-patients and have used social media to connect with others like you to exchange stories and knowledge, I want to hear how you did it.
Why I ask… Modern Health Talk is positioned between these extremes, at the intersection of several important trends, including rising costs, aging baby boomers, wireless Internet access, telemedicine, and increased interest in social media, digital sensors, telepresence, and smartphones & tablets. BUT… We’ve found that the good online support groups focus on a single medical condition and NOT the combination of conditions and limitations associated with aging. We so far have been unable to build a vibrant community that engages the elderly in discussions of tech solutions for aging and want to learn from the success of others, potentially partnering with them. So please share your experience by email or a comment below.
e-Patient Katherine Leon
Below, NPR reports on patients with rare diseases who are finding each other online and promoting new research. The story features Katherine Leon, a woman with an extremely rare heart condition who managed to do what many hospitals couldn’t. She set up a virtual patient registry, allowed patients from all over the world to submit their medical records and scans online, and then used the data to convince researchers at the Mayo Clinic to run clinical trials where there was no interest before. Her story became national news.
From Dave’s Story: “e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.
Dave was certainly motivated, and he turned to the Internet for solutions, but WebMD and several other sites offered little hope. That’s when he discovered Acor.org and learned about Interleukin-2, a hormone that helps the body’s immune system differentiate between good cells and bad. It’s not FDA-approved, but he learned that four doctors in his part of the country offered it. Dave not only has survived so far, but he has become an accomplished public speaker and advocate for patient rights to their own data, as shown in his inspiring TED talk below. You may also enjoy Gimme My DaM Data (Data about Me), his rap-style music video.
Social Media in Marketing
Modern Health Talk uses social media like many other companies, including Facebook, Google+, Pinterest, and Twitter, to promote our existence, but that’s not the same as the tools people use to help each other. Many employers are responding to social media trends with policies to guide how it’s used by employees, as shown in the following infographic by payscale.com. But first, here’s a look at just how much social media activity is occurring.