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Who would have guessed that the worldwide hub of democratized health care would be a grassroots woman from America, a painter? This book is Duck Medical Dynasty. If I were to write each and every story I heard from somebody (surgeon, doctor, nurse, patient, relative) complaining about the health care system, I would probably be the busiest woman on earth (spoiler alert: unpaid work), and the least popular. Plus I’d probably end up killing myself. But Regina (Latin: "Queen") wrote a special algorithm that kind of changed the gravity laws of paternalistic, patent (not « patient ») centered life science. « Words placed where they do not belong can be hard to ignore » (p. 20). Like painting episodes highlighting people’s lives or experience as caregivers or patients at the back of their jacket, or on Diego Riviera-style murals? A jacket they would wear during medical conferences or congresses; murals getting press coverage in national newspapers ("73 cents" ). Lobbying is usually a job involving politics and money. Regina’s activism consists in painting - politics and money are side effects, the former more abundant than you wish for, the latter much less generous (« nice girls don’t get rich »). All she wants is to be put out of business. She is the transition hero we need right now. We all heard that one day (in a few decades?), we will be able to 3D print organs, or medical treatment against diabetes or even cancer, and patients will own their medical and genomic data that they will be able to share with whoever they want and even monetize. Owning the data coming from your own body. It kind of makes sense, doesn’t it?« Feel better, monetize your data! » Meanwhile, we are stuck in a world of imprecise chemotherapies killing healthy cells in patients, of patients having to pay till it hurts, of organ « donation » shortage (not enough people dying?!?), of patients begging to access their own medical data until it is too late for them and their ghost has to carry on with the begging job. Obviously, the brilliant future of medicine, the so called « Singularity or Exponential Medicine », has a transition problem. How do we get there? Anyone willing to offer a hype filter? I used to write that Eric Topol MD, author of medical bestsellers « The Creative Destruction of Medicine », « The Patient Will See You Now », and Regina Holliday, are the alpha and omega of digital medicine. Not like Doctor Who’s Omega (Season 4), though, wanting to control and own the Singularity. Taking advantage of her algorithm, Regina, the founder of the Walking Gallery of Health Care, has painted over 380 jackets, with the help of a few artists she has recruited. Somewhere I have read that being able to tell your story or having someone tell it is as important to you as food or love or shelter. The algorithm is powerful.
Doctors gave Regina and her two young sons a ghost (a deceased father); she is giving them tough love in return, denouncing and fighting entrenched and paternalistic medicine and anything putting patients in « data prison ». Being robbed of your own data means you don’t have the information. As I heard surgeons and doctors say over and over again: « Information is power ». Without your health data, you have neither knowledge nor power. Are you at risk for a disease? Are you sure you are aware of the best treatment options for your condition? Was your doctor able to achieve the right diagnosis? Or does it feel more like you just saw the Marabout of some African village in the middle of nowhere, and were « given » amulets for good luck? Outrageously bad medicine for the over priced amount that was charged! « 73 cents. (…) This is how much you can pay per page for your medical record in hospitals in the state of Maryland. In Texas it is often a dollar. In Germany it was 88 cents. In the US, you also can easily wait to 21 days to get the entire record, but if the facility says they need an extension a family can wait 60 days. » (p. 235). According to Eric Topol MD, the cost per minute in the Emergency Room is 82 cents, in the surgical Intensive Care Unit: $ 1.43 and in the operating room for an orthopedic surgery case: $12.» (source: twitter, September 7, 2015). What is the cost of a delayed diagnostic - renal cell carcinoma in the case of Regina’s husband? Death.
This book, telling the story behind the (380 and counting) painted stories, is like two musicals undergoing a « freaky fusion » process: « Les Misérables » and « The Book of Mormon ». Making the leading edge and the bleeding edge of medicine work together to put the patient at the center of the health care system is like some kind of Monster High « Freaky Fusion », as it has never been done before. How do we get there is the question everybody is asking. There is no doubt we will need transition heroes. Regina is producing those, one jacket at a time. This « in your face » kind of activism will make history. One question remains, and the book does not give the answer: can the powerful algorithm change this: « Nice girls don’t get rich »?
When an artist’s work has been endorsed by the art world, this can increase the value of the artist’s portfolio and catapult him into another tier of prestige. What price would « The Walking Gallery of Health Care » sell for? Will the murals and paintings end up at the MoMA NY one day? Regina isn’t a one-trick donkey. She has other algorithms in store for us…
« On May 30 2009 at 4:30 in the morning, I would place the first mural called ‘The Medical Facts Mural’ in Pumpernickel’s Deli. Within days, the work would be shared on the HealthCare Blog. An advocacy movement was born. » This mural was a « re-visioning of the face sheet mimicking in style and clarity the nutrition facts label: all-important, vital statistics were present with norms for comparison. » (p. 204).
Chapters from this book everybody should get to read: « Little Miss A-Type Personality », « Data Prison », « Art as Medical Advocacy ».
May the Force of the Suits Be With You.
My review on @amazon of @ReginaHolliday's book The Writing on the Wall http://t.co/0a915TTtKG #DoctorWho #PWSYN pic.twitter.com/lbqhq1pi50— CATHERINE COSTE (@cathcoste) September 8, 2015