Thursday, June 16, 2011

A Story About the Healthcare System, Family, Art, and Patient Rights [Video]

Regina Holliday
Regina Holliday tells her story at e-Patient Connections 2010.
I just started working on a promo video for e-Patient Connections 2011. This year, my goal is to get some live streaming coming out of the conference so that people who aren't able to attend will be able to see some of these incredible presentations as they're happening. I'd love to write a post that tries to explain empowered patients and participatory medicine in more detail, but my friends over at KrÅ« Research can do that better than I ever could in their blog, The Patient Will See You Know.

This is the video that they released today, Regina Holliday: The Worst Pain Imaginable. It was one of the most memorable presentations from last year's conference, maybe the most memorable. In the presentation, Regina relates her experiences with the healthcare system during her late husband's illness, the effect it had on her family, including her autistic son, and how she became an advocate for patient rights.

For those of you not familiar with Regina and her story, here's a bit from her own blog:
Regina Holliday is a DC-based patient rights arts advocate. She is currently at work on a series of paintings and blog posts depicting the need for clarity and transparency in medical records. After the death of her husband, Fred Holliday II, on June 17th 2009, She began a large Mural Titled “73 cents.” This piece can be viewed at 5001 Connecticut Ave. Washington, DC 20008. This piece depicts Holliday family’s nightmare journey through the medical system during Fred’s cancer care. The painting became part of the national healthcare debate and was covered by the BBC, CNN, CBS, AOL, VOA, NPR, The Washington Post and the BMJ.
The video is 15 minutes long, but absolutely worth your time. You will be moved by Regina's story.

The gamut of things covered at this conference is pretty amazing. One minute you might be watching a panel discussion on FDA regulatory procedure pertaining to social media. Next it might be a race car driver talking about Twitter, a demonstration of a gadget that helps you sleep better, a cautionary rhyme about new age medicine, or an incredibly moving personal story like this one.

Learn more about the voice of the patient by following Regina Holliday's Medical Advocacy Blog. If you're interested in all things e-Patient and health 2.0, be sure to follow Kru Research's blog, The Patient Will See You Now. And while you're here, feel free to subscribe to my blog or follow me on Twitter.