by Kari Skipper Foster
There was so much to take away from the Mayo Ragan Health Care Social Media Summit. As I’ve jumped back into the ‘real world’ of work, I find myself wishing for just one more meeting and a chance to reconnect in person with that big gang of folks who are passionate about the possibilities that social media offers to healthcare providers and patients.
To me, the possibilities around connecting patients with other current and former patients who share a diagnosis are exciting. At the Summit, some great people who happen to be patients took the time to explain what it was like to feel so alone with a diagnosis, whether it was because of their age, the rarity of their diagnosis or challenges in communicating with their healthcare provider(s).
Some described how so much time (and money) was lost because they were recreating the wheel as they looked for solutions. Others talked about how helpful it was to know about side effects from people who had actually experienced them. The “heads up” that certain side effects were possible after a procedure let them prepare in advance for the possibility and gave them a sense of control over at least an aspect of their situation. Those who weren’t privy to such information talked about their frustration over things that could have been easily addressed if they’d only known in advance.
Once again, Mayo Clinic is blazing the healthcare social media trail by using Facebook to help connect Esophageal Cancer survivors.
There is so much health information out there, some factual, some not so much and some flat out wrong. There are so many people who have “been there, done that.” We need to use the Mayo model and other support-oriented models to connect these people with the people whose heads are spinning, wondering “what on earth do I do now?” I’m not talking about “civilians” dispensing medical advice, just sharing firsthand experience that might make the journey a little easier.
My thanks to the people who attended the Summit to help educate us on patienthood: Dave deBronkart, Kari Ulrich, Virna Elly, Corey King, Jim Pantelas, Jill Plevinsky, Katherine Leon, and Laura Haywood-Cory.