Regina Holliday

I have a close friend who is looking for treatment for a “bleomycin lung injury” to a close family member. Bleomycin is one of the chemicals included in chemotherapy treatment for Hodgkins Lymphoma. The patient had 9 of 12 chemotherapy treatments for Hodgkins Lymphoma and the cancer was responding very well. It became evident about two months ago that the patient was suffering from lung damage, so his oncologist took him off the bleomycin component of his chemotherapy regimen in September.

Then a couple of weeks ago his lungs suddenly gave out and he was gasping for breath and had to be rushed to the hospital. He was placed on supplemental oxygen and has been taking steroids to counteract the effects of the bleomycin. His lungs seemed initially to be improving, but his body was under such extreme strain that they chose to intubate and put him on a ventilator to avoid a collapse of the heart or lungs from the sheer exhaustion of breathing. He’s been on the ventilator since then, but improvement of the lungs appears to have plateaued. There have been various other complications but they appear surmountable if the lungs improve. The core problem is bleomycin injury or bleomycin toxicity.

The patient is receiving care south of Boston. The primary MD on the case is a critical care doctor and pulmonary specialist. Moving to another facility is not an option (he’s too fragile) but current doctor is open to input from other providers.

Regina Holliday is a Washington, D.C., art teacher, artist, muralist, patient rights arts advocate, founder of the Walking Gallery and the Medical Advocacy Mural Project. She is a blogger at her Medical Advocacy Blog.

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Health Foo image via Paul Levy @Running A HospitalI cite this favorite quote from Max Planck in my book (and every chance I get):

A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.

I think this applies to all walks of life, not just science. Yet sometimes an argument so compelling comes along that, though reluctantly at first, one by one the old guard drop at its feet. This is what happened to me this weekend at the Health Foo Camp in Cambridge, MA.

First, what is Health Foo? Well that was my first question when I received an invitation to attend this strangely named meeting. A Foo Camp is something put together by O’Reilly, the pioneering digital media group. Started 12 years ago, these meetings are thematic gatherings of “Friends of O’Reilly,” hence “Foo,” intended to bring together a diversity of thought about a specific field. The camp that I attended was the second such gathering in the healthcare space, supported in part by the Robert Wood Johnson Foundation, and held at Microsoft’s New England Research and Development Center in Cambridge. How can I ever thank O’Reilly, RWJF and Microsoft for this mind-shifting event?

As I mentioned in my previous post, the attendee roster was so full of luminaries that I frankly wasn’t sure that the invitation had not ended up in my Inbox by mistake. But mistake or not, what a privilege to attend! I spent the weekend getting to know the faces and the substance behind such familiar names as Regina Holliday, Paul Levy, Alan Greene, Ted Eytan, Susannah Fox, Gilles Frydman and others. And what still has my mind spinning is my conversations with people I don’t normally interact with — computational scientists, game designers, food advocates and international public health movers and shakers.

The most risky aspect of this meeting was the very essence of its success: we were to free-range. No agenda was set; space, food and company were provided. The resulting sessions ran the gamut from the usual nerd porn of probability to such far-reaching topics as memory and the role of faith, poetry and the arts in medicine (my personal favorite, where I got to play in the sandbox of participatory painting led by Regina. Take that, left brain!)

I have to say I spent a part of the weekend in a bit of a fog. What is gamification of medicine? What does “deep modularity” mean? But the full impact of such diversity of knowledge did not hit me until I was heading West on the Turnpike away from the meeting in the direction of home. It felt like a deep air pocket, and for a moment I couldn’t catch my breath. Continue reading “FOO For Thought”

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The protest organized by Regina Holliday over a patient’s right to access their medical information is not quite the same magnitude as agitating for integration in 1950s-era Alabama. Yet there are intriguing similarities between the crusade Rosa Parks launched then and what Holliday is attempting today. Both involve a refusal to accept second-class status and a resolve to push back against entrenched institutions.

Parks’ story is well known. Her refusal to surrender her seat to a white male passenger on a Montgomery city bus in December, 1955, prompted her arrest and a sustained bus boycott by outraged black residents. That boycott’s success propelled a young Martin Luther King, Jr. to the forefront of the fight against segregation. Parks eventually came to be known as the “mother of the modern day civil rights movement.”

Continue reading “Will Regina Holliday Become Health Care’s Rosa Parks?”

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Just thought that I’d share this photo taken by @drjmob at the Partnership for Patients meeting today. (P4P is a safety initiative kicked off by HHS a few weeks back). Here’s patient data advocate (and BFF of Health 2.0) Regina Holiday getting to grips with CMS head Don Berwick. In fact they had remarkably similar experiences with spouses who endured terrible hospitalizations made worse by incomplete data and poor provider team communication. Here’s Regina’s story from her blog and here’s Don’s (starts on Page 20 of Escape Fire but read the whole thing if you haven’t before). It’s an unlikely couple–the pre-school teacher without a college degree and the Harvard policy wonk. But they share a human experience both are working hard to eradicate.

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On the last day of the Health 2.0 Fall Conference in San Francisco, October 7-8, 2010, Regina Holliday presented the painting that she worked on for the full two days of the conference. She titled her painting Bridging the Great Divide, in reference to how we communicate, bridge communities, and combine left and right brain thinking.

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