Twitter chats engage patients and experts

June 3, 2014 – 8:52 AM | By Amanda Pedersen | No comments yet
A DDW attendee stands in an inflatable colon tunnel on the exhibit floor in May.

A DDW attendee stands in an inflatable colon tunnel on the exhibit floor in May.

When I was first diagnosed with ulcerative colitis 15 years ago my instinct was to learn everything I could about the disease. Unfortunately, my doctor at that time discouraged me from educating myself. He handed me a pathetic little brochure that didn’t answer any of my questions and told me to stay away from the Internet. It seemed that to him, an uninformed patient was an ideal patient.

I never knew if that doctor was afraid my wee little layperson’s brain wouldn’t comprehend medical jargon, or if he just thought I would naively stumble upon misinformation. He also told me I was too young to have Crohn’s or colitis, collectively called inflammatory bowel disease (IBD), so perhaps he was the one who was misinformed.

Thankfully, times have changed. Patients today, regardless of the health condition they are faced with, are better informed than ever before. A plethora of consumer-targeted websites and mobile apps have launched in the name of patient education. Smart patients are taking responsibility for their own health and are actively seeking information to better manage their condition.

I witnessed a fantastic example of this trend last month during the annual Digestive Disease Week meeting in Chicago. I was impressed to see several IBD patients engaging with experts during DDW Twitter chats. The average patient doesn’t have the money or the credentials to attend medical meetings like DDW. But through Twitter, patients had front row access to experts and to the latest IBD research.

I’m certain the dialogue was equally beneficial for the doctors and researchers. Not only could these experts glean knowledge from each other, they were surely reminded of the impact their work has on actual patients.

In addition to IBD, the DDW Twitter chats explored trends in colorectal cancer screening, the role of the microbiomes in digestive diseases and the hepatitis C epidemic.


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