Almost exactly three years ago, I was invited to speak to a regional meeting of diabetes educators about the interactions of social media and diabetes. The diabetes online community completely changed both my diabetes management and the way that I manage to live with diabetes (e.g. psychologically, emotionally) that I was thrilled to make the presentation. My excitement was somewhat dampened when the first question from the audience was
Why would I want my patients to go online? People on there will just give them bad information and advice.
I went on to share with them the feelings that accompany living with a mostly invisible illness. I have the luxury of choosing to hide most of evidence of my life with diabetes most of the time, and only disclose it when I feel comfortable*. The diabetes community is not about getting medical advice. It is about the encouragement that comes from someone saying “me too,” about being reminded that you can do this, and the power of a loud voice that comes when a community speaks together.
I think for the most part, the best health care practitioners have moved beyond the point of questioning the support of online communities for their patients and are actually trying to figure out how to incorporate it into their practices – hence the existence of the Medicine X conference itself. However, on the first day, one of the presenters questioned the effectiveness of Twitter in participatory medicine. They wondered if Twitter had moved past a place where people just shared what they were having for lunch.
Powerhouse advocate Regina Holliday had a swift response to the question.
And the evidence of the reach of the MedX discussion beyond the conference walls is just about all the proof you need.
* More about this later. There is an idea developing among the MedX epatients for an amazing advocacy project about the masks we choose to wear and how and when we choose to remove them.
Disclosure: I was awarded a scholarship towards travel, hotel, and conference registration costs to attend Medicine X. The scholarships awarded to the epatients demonstrate the desire of Medicine X to incorporate patient participants in all levels of the discussion. I was not asked to write about MedicineX, but will likely be processing the experience in a few more upcoming posts.