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The Power of Online Support

The Power of Online Support Feature Image

In the past decade, we’ve witnessed the introduction—and boom—of social networking platforms, experienced the rise of smartphones, and discovered new ways to keep technology at our fingertips. So it’s no surprise that online patient communities and Tweet Chats—for diseases ranging from cancer to rheumatoid arthritis—are on the rise as well. Just take a look at the numbers:


With well over 1 billion tweets on over 16,000 topics and more than 3,500 contributors, people have a lot to say and share about their health.

What are people getting out of these discussions? Here’s what you told us on Twitter: you like getting complex health information distilled into terms that are easy to understand and apply (from @onthetee); you found a long-sought diagnosis (@Notfroggie); and you value knowing that you aren’t alone on your health care journey (@MelissaSaysHi).

Someone whose drs all laughed at her and thought she was pain med seeking (despite vascular issues) just got a diagnosis of #ehlersdanlos +

— Froggie (@Notfroggie) December 30, 2015

She never would have gotten it if she hadn't done her research and then found patients to tell her the names of dr who see patients with it+

— Froggie (@Notfroggie) December 30, 2015

Had that not happened she never would have seen needed physicians and would have forever been labeled...

— Froggie (@Notfroggie) December 30, 2015

A more official survey was recently published in the Journal of Medical Internet Research, including people with breast cancer, their caregivers, and their health care providers who participate in the Twitter community #BCSM (Breast Cancer Social Media). The journal, which has been around since 1999, covers topics including personal health records, mobile health, and telehealth and telemonitoring. The category of peer-to-peer support and online communities has featured at least one article each year since 2011 and focuses on a wide range of conditions, including mental health, rheumatoid arthritis, multiple sclerosis, diabetes, and breast cancer.

The goal of the survey was to assess the benefits of joining the #BCSM online support group. More than half of the 206 respondents who are active in the online support group do not attend in-person support groups, perhaps because traditional support groups aren’t available in their area, because transportation or childcare issues may prevent them from attending in person, or because local groups aren’t meeting their needs.


There were many interesting findings from the survey, including:

  1. Most respondents (87%) agreed that #BCSM “provided a safe and welcoming forum for support and education” and that participating in #BCSM helped them increase their knowledge about breast cancer overall (81%).
  2. More than a quarter of the respondents (28%) were motivated by their #BCSM participation to participate in advocacy or volunteer efforts.
  3. More than half (66%) said they were made aware of clinical trials and clinical research through #BCSM.

One thing is clear: people benefit from participating in online support groups.

Last week, we celebrated World Cancer Day with the theme #WeCanICan. The overall message undeniably focuses on supporting each other. Sometimes that support may come best through an online forum.

If you’re living with a health condition and are not already participating in an online group or Tweet Chat, we encourage you to check one out. If you are participating, we’d love to hear more about how online communities support you. Contact us via the comments below or on Twitter @LillyTrials.

Blog post originally appeared on LillyPad.

Tags: Advocacy,

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