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In health care reform, art keeps patients in the picture

Regina Holliday painting at a health care conference this month in Washington, D.C.

An example of Holliday's work.

The conversation about health care can get pretty wonky: global payments, aligned incentives, health-data solutions, profit potential, and all sorts of other impersonal industry jargon. Washington, D.C., artist Regina Holliday wants to make sure that in all that talk, the most important part of health care reform -- the patient -- isn't forgotten.  

Holliday knows what it's like to feel lost.

She can still see the oncologist who stayed back just outside her husband's hospital room door several years ago.

"We had a list of five questions of what we needed to know was going to happen next," Holliday recalls. Simple questions like when is my husband going to get surgery? When is he going to get chemotherapy? When can we get a walker so he can get out of bed?

"And the doctor said, ‘don’t worry about the questions. We’ve decided we are sending you home," says Holliday.

Translation: there’s nothing more we can do.

Holliday’s mind raced -- one tiny apartment, two small kids, a 39-year-old husband dying of kidney cancer. She looked at the doctor -- who still hadn’t come into the room, and asked: "How will this all work?"

He told Holliday: "That will be a question fore the discharge nurse on Monday?’ And then he left us there," she says. 

In that brutal moment -- when patient and doctor were so far apart -- Holliday felt powerless. And it only got worse over the next several weeks as her husband got sicker. Holliday never felt like she could just break through the system and get a handle on her husband’s care.

"There’s some folks who feel like patients, why can’t they just be compliant? If they just listen to their instructions, really we aren’t meeting at the same point," says Holliday.

 In the time since her husband died, Holliday thinks she’s hit on a way to make it easier for patients to be heard. For the past two years she has painted people’s health care stories onto the backs of suit jackets and blazers. Stories of towering hospitals that dominate a grim monopoly board and empowered patient hands reaching up with their smartphones.

She calls it the Walking Gallery.

Holliday sets up her easel at health care conferences, and recruits people by offering the paintings for free.

The hope is influential types like policymakers, insurance executives and doctors -- will wear these stories on their backs. Stories in vivid paint that will be reminders, to make sure patients don’t get lost in the rush to fix health care, or to make money off reforming health care.

Kavita Patel with the Brookings Institution -- who doesn’t have a jacket -- says the strategy of humanizing people behind controversial issues is smart and effective.

"The Aids Quilt, and the stories and images associated with it had a very substantial impact on policymakers. I think that’s literally what we are seeing the birth of in her efforts," she says.

The Walking Gallery is a long way from the Aids Quilt. But Holliday’s work has come at a good time. Her campaign has tapped into a growing national discussion.

"I think we are in an exciting moment that the balance is shifting more attention towards patient behavior, patient engagement, patient empowerment," says Dr. Farzad Mostashari, who helps oversee health technology for U.S. Department of Health and Human Services.

He has his own jacket, painted with an electronic health records theme. Mostashari says look around patients are being taken more seriously than ever. Companies are popping up to help consumers shop for insurance, and hospitals can find their fortunes tied to patient surveys.

Some think focusing on patients has enough momentum; it doesn’t need what some consider a gimmicky approach. That sentiment though doesn’t slow down Holliday.

"Give me the human face, give me the human story, now we can do magic together," says the artist.

Holliday says she’s out recruiting people to wear the jackets and looking for other artists too. As they like to say in health care circles, Holliday wants to ‘scale up’ this project.

About the author

Dan Gorenstein is the senior reporter for Marketplace’s Health Desk. You can follow him on Twitter @dmgorenstein.

An example of Holliday's work.

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Thanks for this, Dan. I too am a member of the Walking Gallery (Regina delivered my jacket to me while we were both attending Medicine X at Stanford last fall). She called my jacket painting "Don't Make A Fuss" - it reminds women (and their doctors) of the deadly consequences of being unaware of our #1 killer - heart disease.

What I love about Regina's unique concept: even if a medical conference has not one single Real Live Patient in attendance (sadly, still often the case - even when docs and other health care providers are talking about us without us!) what you'll see from the back of the room are these haunting full-colour stories of patients and caregivers painted on the backs of business jackets - whether you invite us in person or not.

I'm a proud member of The Walking Gallery, delighted to see Regina Holliday's work covered here. I'll second Bart Windrum's observation that those who think using art to amplify the patient voice is gimmicky entirely miss the point. Anyone with that view just needs one hospital admission - for themselves or someone they love - to shift their thinking permanently.

Regina, I want to commend you for what you are doing to help others! BRAVO! I just posted this article to my blog, Living La Vida Lymphoma to raise awareness for your cause! Thanks so much for all you do!

Sending you a BIG virtual hug~
Jodi

Dan, one thing we patient advocates/activists value is transparency. So, it'd be valuable if you were to share who among your interviewees voiced the opinion that the Waling Gallery is a gimmick.

[disclosure: I'm a WG member with a jacket painted by Regina summer 2013]. I can assure you, based on Regina's experiences and my own (both parents' terminal hospitalizations, the second involving fatal nosocomial MRSA, resulting in a book and end of life reform work) that any citizen called to action around health treatment delivery reform is running no gimmicks.

Whoever suggested gimmickry, whether using that or a related term, is running a disempowerment action; perpetuating the same old same old that so troubles millions of patient families in America and throughout the industrialized-medicine world.

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