We don't talk about it all that much in the heart of the diabetes online community (DOC), but there's actually an incredibly vibrant and growing larger community of online patient advocates out there who are banding together to do great things. No matter if you have prostate cancer, fibromyalgia, chronic migranes, or... diabetes.
I'm a member of a group called the Society for Participatory Medicine and on their email list, so I get to see dozens of updates from fellow "ePatients" every day on topics ranging from health data privacy to patient-doctor conversations to a health IT video contest called "Your Record Challenge" (some of videos featuring youths are must-see!)
Regina Holliday, whose son happens to be featured in a recent YRC video submission, is a special kind of patient advocate who's gaining national attention. She was widowed in 2009 after her husband Fred died of kidney cancer at age 39. Regina quickly began expressing her patient advocacy through art. She's painted dozens of posters and murals illustrating the patient experience — many of them created on-site at health conferences around the country. Most recently, she also painted all the illustrations for the ePatient eBook promoting Stanford's upcoming MedX Conference.
But I think the most exciting thing Regina has created is something called the Walking Gallery. The idea was to paint a special piece for individual advocates illustrating their personal journey as a patient — but not on paper, or even on a wall. Rather, she paints their stories on the back of a jacket that each ePatient can proudly wear as they make appearances at conferences and forums on health and medicine.
Here is the jacket Regina just finished for me:
Here is the "mural" up-close:
I know, I know... the image is kind of haunting. Even my teenage daughters called it "disturbing."
To that comment, Regina replied, "Have they ever been in a mine? I toured one as a child. I painted you at the beginning of your advocacy — a scary place."
And the significance of the papers flying?
"Those are all the messages to you from the members of the community. iPads/computer screens flying didn't look as cool," she says.
Thanks, Regina. It's not often one can be "disturbing" and "cool" at the same time. I take pride in that (he, he).
If you like what you see, I urge you to go visit Regina's Medical Advocacy Blog, "a place where art, medicine, social media and pop-culture collide and create a patient voice in health information technology."
*** UPDATE 9/6/12, 1:30 PST ***
btw, next week happens to be National Invisible Illness Awareness Week! The organizers are encouraging everyone to "blog for the cause" and "post your images of hope!" See details here, or by clicking the icon: