Wondering what’s happening at Ragan’s 4th Annual Health Care Social Media Summit at Mayo Clinic Oct 17-18? Here's an update on our patient panel.
Follow our incredibly active hashtag at #MayoRagan
Social media empowers patients to tell their stories, create communities of support and share information that they might not otherwise find.
The next time someone questions the purpose of social media, share these stories from our #MayoRagan panel.
Melissa Hogan, lawyer, author, speaker and advocate for rare disease families shared her story with the audience first.
Hogan’s son, Case, was diagnosed with Hunter Syndrome. Hogan and her family went through heart wrenching experiences, such as watching Case’s ability to speak gradually decline.
To find support and information, Hogan turned to social media. She found online forums on social media and eventually heard about a clinical trial.
Her son was able to enter the clinical trial, but she realized that many other children wouldn't have the opportunity that was bestowed upon Case. Hogan committed herself to becoming a resource for the families of such children.
Hogan used her blog, Saving Case, as a vehicle to share experiences with her online community. As an attorney by trade, she was able to speak eloquently about the legal aspects of health care, as well as essential information like where to find the best wheelchairs. She showed people what worked for her.
Her blog has been read in more than 100 countries.
Skin of Steel, an organization founded to help spread the word about skin cancer, uses Facebook to share information—including prevention information, share their latest events and drive online contests.
They share stories of other melanoma patients. Which, as Debbie Hepburn, a Skin of Steel advocate, says, “Makes it more human, more emotional. “ It’s these hero stories that gain the most interest and are most often shared.
Social media apps
Patti Koblewski, who suffers from chronic back pain, has made it her goal to help others find resources to help manage chronic pain.
Mobile apps are an invaluable resource for patients:
“The typical smartphone has more computing power than Apollo 2 did when it landed on the moon,” shared Koblewski. And people are using that power to access information frequently.
Koblewski talked about the amazing apps for fitness and health including RunKeeper, SleepCycle and more. She also told the audience that Mayo Clinic and Kasier Permanente have a number of apps that allow patients to access medical records, make appointments and more.
She explained that the U.S. Surgeon General created a healthy app challenge that challenges developers to create apps to help users engage in healthy behaviors.
Koblewski shared a list of virtual conferences that people can attend for free
Invisible Illness Week
Allsup’s True Help Disability Web Expo
Pain Management Virtual Conference
Lindsey Miller is a liver. That’s how she describes herself. It’s a pun because Miller has pancreatic neuroendocrine cancer, which affects her liver. Her cancer is chronic. She is a patient and a survivor, but because of her condition, she doesn’t fit ‘neatly’ into a category. She continues to live with cancer. She is a liver.
When Miller was diagnosed with cancer, she was hesitant about announcing it. She didn’t want to talk about it. So, she took to Facebook to let her community know. After that, she decided to start a blog, http://iamaliver.wordpress.com/.
But it was her YouTube video that spread the word about her condition and helped her form an online community.
Lindsey and her friend, Ragan’s Jessica Levco, took to YouTube after Miller saw the movie 50/50, which chronicles the story of a young man living with cancer. Miller related to his story and asked the star of the movie—after explaining her situation and how the movie moved her—if he would accompany her for a cup of coffee.
Miller never got that cup of coffee. But what she did get is 401,373—and counting—views on YouTube and the inspiration to bolster her blogging practices and share information on her life with cancer. In her blog, she writes about her experiences with insurance, financial strain, dating, daily joys like farmer’s market and how her life has changed as a result of having cancer.
The media picked up her story because of her YouTube video. Not only is she brave enough to ask out a Hollywood actor, but to share her story with the world.