Tips for Using Social Media, Internet for Health Support

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Two years ago, my youngest daughter was diagnosed with a rare genetic skin disorder. Like any determined parent, I set out to find answers, the correct diagnosis and treatment options.

During a visit to the Cleveland Clinic, a well-respected pediatric dermatologist provided his assessment. He concluded our visit with this command: “Whatever you do, don’t search Google for pictures of this disorder. Those pictures are probably not the same thing your daughter has.”

That’s like putting a plate of cookies in front of a 5-year-old, telling her not to eat the cookies, and leaving the room.

I don’t think we were out of the hospital before I was searching the name of the skin disorder on my smartphone.

Of course, the pictures weren’t pretty, just as the doctor warned. But it immediately made me question the kind of life my daughter might have. Would we find treatment options? If no treatments existed, where would we find support? Do local or online support groups exist for this type of disorder?

The doctor was right. I shouldn’t have looked. But it made me think about how other doctors might discourage (or encourage) their patients to research medical conditions, find answers, and connect with local and online support networks.

Dr. Mike Sevilla, a physician based in Salem, is one of the first medical doctors to use social-media to connect with patients. He said the No. 1 tip he gives patients is to not use Google to start their searches.

“The top Google results usually scare people and usually have inaccurate information,” Dr. Sevilla said.

And if you’re looking for links to social support, skip Google. Social-support networks such as PatientsLikeMe.com or CureTogether.com are independent of hospitals and national organizations. When searching for “cancer support,” these sites don’t show up in the top Google search results.

So where should you start?

Dr. Sevilla suggests four groups of websites that he encourages his patients to use.

1. Disease-focused sites. Look for disease-focused sites such as the American Cancer Society (cancer.org), the American Heart Association (heart.org) or the American Diabetes Association (diabetes.org).
   
   After two clicks on the American Cancer Society site, you’ll find links to support networks such as the Cancer Survivors Network. The Survivors Network includes discussion boards, chat rooms and private email. Members are able to create personal pages to share survival stories through blog posts, photos and audio messages.
   
   
2. Hospital sites. Dr. Sevilla noted two of the best hospital websites in the country are the Mayo Clinic (mayoclinic.org) and the Cleveland Clinic (my.clevelandclinic.org). Additionally, many hospital networks maintain active social- media platforms. The Mayo Clinic, for example, regularly posts to its Twitter feed interesting facts, links to recent studies, photos and videos (https://twitter.com/MayoClinic).
   
   
3. Government sites. “For immunization and infection information, I usually go to the Center For Disease Control and Prevention [CDC],” Dr. Sevilla said. The CDC website is located at cdc.gov. Additionally, the CDC has an active social-media presence on Facebook (facebook.com/CDC) and Twitter (CDCgov).
   
   
4. Commercial sites. “I use WebMD (webmd.com) a lot because physicians write the content, and they sometimes include helpful graphics,” Dr. Sevilla said. WebMD regularly engages social-media users. This past week, WebMD hosted a live chat on the Ebola virus outbreak and solicited questions from followers on Facebook and Twitter (using the hashtag #Ebola).
   

Of course, there are limits to finding information online and support through social-media groups. Nothing beats a visit to your physician. But when the next available appointment is weeks away and you need answers now — social media.

I was able to find online support groups for my daughter’s rare condition. As a parent, it was reassuring to know there were others out there who could offer support.

My daughter is fine, and in good health. But next time, I’ll be sure to follow the doctor’s orders and keep a safe distance from Google.

~ A version of this post appeared in the Sunday, August 10, 2014 "Connected" section of The Vindicator.