How Do Patients Use Social Media?


Do you know that there is an Internet? And that you can find information about inflammatory bowel disease on it? I bet you do! A recent study looks deeper at how people with IBD use social media.

The study is titled “Social Media Use In Patients with Inflammatory Bowel Disease,” and was published in the February issue of Inflammatory Bowel Disease. It is a review study, discussing the many papers on the subject already published.

You probably already know that patients use social media and the Internet to find information about their health. The authors write: “the term ‘e-patient’ has been coined to describe patients who look online for healthy information.” This is a mistake, as e-Patient more correctly means: “individuals who are equipped, enabled, empowered and engaged in the health care and health care decisions.” (Not every patient on the Internet is an e-Patient!)

You might not know that most patients use the Internet: one study found 61% of adults go online for health info, and another found that 60% “said that information online affected a decision about how to treat an illness or condition”, according to the paper. More than half of patients search online for information about their provider.

You aren’t surprised, right? But here’s the thing: physicians need to know this information. They have been very slow to join the Information Age, and that has hurt their patients.

This is the main idea of the study:

We encourage physicians to have a presence online and in social media so that the quality of information posted online can be improved.

The paper cites several studies showing that online information about IBD is bad — and this is the part that is most interesting to patients. For example, one study found that online info about IBD averaged a score of 57 on a 107 point scale. Another study found that “many websites lacked information on the prognosis of IBD, side effects, and the risk of developing cancer.”

Yet another study rated 43% of IBD-related websites as “excellent to good”, with 57% scoring “fair to poor”. Meanwhile, one study found that patients “rated IBD information from the Internet at 6.8” — on a 10-point scale where 10 was “very trustworthy”.

The goal of this study is to get physicians to be more visible online, so they can promote good information about the disease. Now let me step into editorial mode, and ask: why is that so hard?

The main reason is that most research is stuck behind paywalls — toll booths that benefit nobody except publishing corporations. Many of the posts here at Crohnology have been possible only because an author sent me their article — though in one case, it took 8 months of me emailing. I put in the effort because I believed the research was important to share with my readers, but it’s time-consuming and sometimes exhausting work.

With “good information” hidden by paywalls, it’s no wonder that vacuum is then filled with recycled press releases, bogus alternative medicine, and other forms of pseudomedical woo.

But the other problem here goes back to who is and isn’t an e-Patient. Too many physicians still see their patients as subordinates, and do not accept the idea of a patient “equipped, enabled, empowered and engaged” to share in health care decisions. For these physicians, interacting with patients online is beneath them.

When I was diagnosed — pre-Internet — I was told not to read any books, because it would scare me too much. But that was bad advice: I am much healthier and better able to manage my illness now that I keep informed and up-to-date. I am an e-Patient.

So the issue beneath this article isn’t just whether or not good information exists: it’s whether patients have a right to that information as peers in their own health care decisions, or instead should remain dependent and subordinate to their physicians. Obviously, I believe we have a right to that information, and physicians can play an important role in helping us understand, interpret, and apply that information.

Patients are already online, using social media and the web to find health information. It’s way past time that physicians join them.

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