Real World Health Care Blog

Tag Archives: advocacy

Artist Turned Health Advocate: An Interview with Regina Holliday

David Sheon

David Sheon

By David Sheon

Artist Regina Holliday uses her talent to change the way health care professionals see and experience their patients.  Her innovative approach to draw attention to the needs of patients to be treated as individuals has already impressed thousands of health care practitioners.

 

When her husband suddenly became sick in early 2009, she saw the flaws in the health care system first-hand.  Now, she uses unique art to advocate for patients and push for changes in health care.  Holliday, joined now with other artists she’s inspired, paints patient stories on the backs of blazers and lab coats, so that they can be worn to medical summits and conferences. When doctors, policy makers, and hospital administrators see these jackets, they are reminded to put patients first and view each for their own unique health history.

 

Through her ambitious initiative, “The Walking Gallery,” Holliday and other artists have painted over 300 jackets, each worn by a proud patient, family member, or friend.

 

Patient advocacy needs fresh ideas, and we admire what Holliday is trying to do, so we interviewed her recently.

 

The Walking Gallery at the 2011 Health Innovation Summit at The Kaiser Permanente Center for Total Health
(Source: https://www.flickr.com/photos/taedc/5824507774/in/photostream/)

 

 “Don’t tell me to zip it”- By Regina Holliday (Source: http://reginaholliday.blogspot.com/2012/06/walking-gallery-walks-on-year-two.html)

“Don’t tell me to zip it”- By Regina Holliday
(Source: http://reginaholliday.blogspot.com/2012/06/walking-gallery-walks-on-year-two.html)

RWHC: How did you become interested in health care issues?

Holliday: I became involved in health care after my husband, Fred Holliday, was hospitalized in 2009 and we saw how dysfunctional things could be.  He was admitted to five facilities in 11 weeks. He died in home hospice during the 12th week.  We had trouble accessing his medical record and I became an advocate for patient data access.

 

What issues particularly interest you right now?

I study patient data access, the intersection of art and health, hospital hygiene and national autopsy rates to name a few areas of interest.

 

If you weren’t a patient advocate, what would you be doing?

I would probably still be selling toys at my old toy store and teaching pre-k art.

 

What are you most proud of achieving throughout your time as a patient advocate?

I testified in 2010 to make sure that patient data access was included in Meaningful Use as a core measure. It was.

 

[Meaningful Use is a government regulation that provides incentives to providers to show that electronic health records are being used in meaningful ways by reaching certain thresholds.  The first threshold includes capturing all patient’s electronic health records in a standard format.  The second threshold focuses on increasing the access of medical records to other health professionals, including hospitals, pharmacies, and labs. The final threshold focuses on improving overall public health with better quality assurance, safety, and efficiency of health care by using these health record databases.]

 

What is the greatest lesson that you have learned along the way?

Never give up. Perseverance wins in the end.

 

What is the most important thing that you want our readers to take away from this?

You can do great things even if you are one person.

 

How can our readers get involved?

I highly recommend using Twitter if you are focused on a cause in health care.  Tweets can help you crowd source and crowd fund.  You will make many friends while helping patients.

 

How did the idea for The Walking Gallery come about?

The Walking Gallery exists because Jen McCabe followed me on Twitter on May 30th 2009.  That was the day before I placed the Medical Facts Mural in Pumpernickels Deli on Connecticut Ave.  That was a day when my Fred was still alive and could speak and eat again because of the wonderful care he was receiving in Washington Home Hospice.  On August 20th, she emailed me after I had posted a comment on her blog and asked me if I would paint a series of paintings on the back of her blazers to wear to upcoming health meetings.  I told her I would be honored to paint jackets for her. The art jacket were the first part of the origin of The Walking Gallery.

 

In April of 2011, I went to an event with Ted Eytan, MD at the new Kaiser Permanente Center for Total Health.  I told him the space was so beautiful that we should do a gallery show there.  He said that they would never let us nail into the smart walls to place canvas work.

 

I told him the art would not be on the walls.  We would wear the art and each be a docent of our own lives.

 

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Looking for a great charity to help patients across America to donate to this Fall? Consider The HealthWell Foundation, a safety net for underinsured patients that provides access to life-changing medical treatments they otherwise would not be able to afford. To learn more and donate to patients in need, click here!
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What is your favorite thing about The Walking Gallery?

Every one has a patient story and all are welcome.

 

Do you have a favorite jacket?

No. I love each for its unique story.

 

We noticed in your video that other artists are encouraged to paint these medical stories for The Walking Gallery, what can we do to help to inform other artists to join in this effort?

It is my hope that people will watch [this video] and paint the stories of patients far and wide.

 

What are you hoping The Walking Gallery will change?

I hope that when members of The Walking Gallery meet people they talk [about] the most important moment in their life and then that reframes their entire conversation on health care.

 

How can our readers have their health story painted on a Walking Gallery jacket?

Reach out to me. I get them done eventually. Otherwise, if you know an artist explain the concept and you can join together.

 

What’s next? Where do you see this going?

Next summer, I am planning a conference that will be a kind of Burning Man meets health care. That will be June 4-6, 2015 [in] Grantsville, MD #Cinderblocks is our hashtag.

Categories: General

Patient of the Month Revisited: Sharon Harris Survives Lupus and Pays It Forward

Real World Health Care is on its summer break. During this time, we will be revisiting some of our Patients of the Month. Please enjoy these inspiring stories from the patients we serve.

Sharon Harris remembers February of 2002. She remembers where she was, what she was wearing, and what she was feeling. Most of all, she remembers the day she was diagnosed with lupus.

Sharon Harris

May is Lupus Awareness Month. Lupus is a chronic inflammatory disease that occurs when the body’s immune system is unable to distinguish between foreign illnesses and the body’s own tissue and organs. Inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart, lungs, and other organs. Although there is no cure for lupus, there are numerous medications that can alleviate its symptoms.

Sharon had just graduated from Florida A&M University in Tallahassee when she received her diagnosis. “I was 22 at the time, fresh out of college,” Sharon said. “You’re taught while you’re growing up to learn your manners, respect your elders, and get a good education. No one tells you about an autoimmune disease that you will have for the rest of your life.”

Nor had anyone told her what having lupus would entail. “I immediately went into battle mode,” she said. “I had graduated from college. I had traveled 1200 miles from my family to make my journalism degree happen, and I was going to fight.”

“But, as soon as I got my fight on, that’s when all the pain started.”

Sharon experienced a flare-up of symptoms. It would be an understatement to say that the rest of that winter was difficult for her. Her hair began to fall out. She suffered from constant fatigue and pain. In the month of February alone, Sharon lost thirty pounds.

After beginning treatment on several different medications, Sharon started feeling better by that summer. One Wednesday during a Bible study, Sharon was asked what she would do if it were her last day on Earth.

“I said I wanted to see the world,” Sharon said. “Because if lupus was going to take me out, then it was going come and find me in Paris on the Eiffel Tower or on a beach in the Virgin Islands.”

By chance, Northwest Airlines (now Delta) had put out an ad to recruit flight attendants. It was a dream job for Sharon. The job provided her with better insurance, and on her off days she could fly to any location on Northwest’s roster. Just as she had hoped, Sharon got a chance to see the world. Amazingly, Sharon started to find that her experience with lupus was helping her have a healthier mindset. “It really made me think of life in a whole different way, and just literally live. Just really get out there and live,” she said.

Sharon eventually moved back to Tallahassee, opening an eyelash parlor and holding down an office job. At that point, she experienced another flare-up. “In October in Tallahassee it is still 100 degrees outside, and I was wearing a wool coat,” Sharon said. “I was so sick.” Sharon packed up and returned to her hometown: Detroit, MI.

Now, too sick to work and without a job, Sharon did not have health insurance. The lupus was attacking her kidneys and the medicine that she was prescribed cost upwards of $3,000 for a month’s supply. Despite pinching pennies to afford her daughter’s medication, Sharon’s mother was willing to refinance her house to save her only child’s life.

That’s when Sharon’s luck shifted. One day, she visited a local lupus organization with the intention of buying a t-shirt, and she ended up walking out with a new job. Her new public relations position did not include benefits but being employed allowed her to purchase health insurance.

Although she had insurance, her share of the payments for her four medications was unaffordable; one of the therapies alone cost more than $1,000 per month. That’s when Sharon found out about the HealthWell Foundation from a Google Alert. HealthWell is a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog).

“Literally, HealthWell saved my life,” Sharon said. “I didn’t have to incur any debt, my mother didn’t have to refinance her house, and HealthWell saved the day.”

SharronHarris2

And Sharon wanted to save the day for others like her. She has become a leading activist for lupus awareness, starting her own advocacy group called Lupus Detroit, which offers lupus patients emergency grants. Sharon points out that there are two colors that are used for lupus awareness, orange and purple. She opted for orange for her organization because the color is “louder” and garners more attention. “Lupus needs all of the attention that it can get,” Sharon said.

Sharon is currently in remission and has been doing well since receiving a grant from HealthWell in 2011 that allowed her to afford her medications. “I was inspired by the work that HealthWell does to help people with their medications,” she said. “I just don’t believe that someone should have to choose between paying for their medication and feeding their children.”

And neither do we, Sharon. Keep up the excellent work.

If you are inspired to help, consider raising awareness during Lupus Awareness Month and showing your support. Here are some suggestions:

  • Make a donation to HealthWell’s SLE Fund in honor of a family member or loved one who is battling lupus.
  • Celebrate World Lupus Day on Saturday, May 10th.
  • Put on Purple on Friday, May 16th and visit The Lupus Foundation of America’s website at www.lupus.org to learn how you can show your support.
  • Find your local Lupus Foundation of America chapter to learn about activities in your area.

Has lupus touched your life? Do you have plans to show support during Lupus Awareness Month? Share your story in the comments section.

Patient of the Month: Sharon Harris Survives Lupus and Pays It Forward

Sharon Harris remembers February of 2002. She remembers where she was, what she was wearing, and what she was feeling. Most of all, she remembers the day she was diagnosed with lupus.

SharonHarris1

Sharon Harris, lupus awareness advocate and founder of Lupus Detroit

May is Lupus Awareness Month. Lupus is a chronic inflammatory disease that occurs when the body’s immune system is unable to distinguish between foreign illnesses and the body’s own tissue and organs. Inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart, lungs, and other organs. Although there is no cure for lupus, there are numerous medications that can alleviate its symptoms.

Sharon had just graduated from Florida A&M University in Tallahassee when she received her diagnosis. “I was 22 at the time, fresh out of college,” Sharon said. “You’re taught while you’re growing up to learn your manners, respect your elders, and get a good education. No one tells you about an autoimmune disease that you will have for the rest of your life.”

Nor had anyone told her what having lupus would entail. “I immediately went into battle mode,” she said. “I had graduated from college. I had traveled 1200 miles from my family to make my journalism degree happen, and I was going to fight.”

“But, as soon as I got my fight on, that’s when all the pain started.”

Sharon experienced a flare-up of symptoms. It would be an understatement to say that the rest of that winter was difficult for her. Her hair began to fall out. She suffered from constant fatigue and pain. In the month of February alone, Sharon lost thirty pounds.

After beginning treatment on several different medications, Sharon started feeling better by that summer. One Wednesday during a Bible study, Sharon was asked what she would do if it were her last day on Earth.

“I said I wanted to see the world,” Sharon said. “Because if lupus was going to take me out, then it was going come and find me in Paris on the Eiffel Tower or on a beach in the Virgin Islands.”

By chance, Northwest Airlines (now Delta) had put out an ad to recruit flight attendants. It was a dream job for Sharon. The job provided her with better insurance, and on her off days she could fly to any location on Northwest’s roster. Just as she had hoped, Sharon got a chance to see the world. Amazingly, Sharon started to find that her experience with lupus was helping her have a healthier mindset. “It really made me think of life in a whole different way, and just literally live. Just really get out there and live,” she said.

Sharon eventually moved back to Tallahassee, opening an eyelash parlor and holding down an office job. At that point, she experienced another flare-up. “In October in Tallahassee it is still 100 degrees outside, and I was wearing a wool coat,” Sharon said. “I was so sick.” Sharon packed up and returned to her hometown: Detroit, MI.

Now, too sick to work and without a job, Sharon did not have health insurance. The lupus was attacking her kidneys and the medicine that she was prescribed cost upwards of $3,000 for a month’s supply. Despite pinching pennies to afford her daughter’s medication, Sharon’s mother was willing to refinance her house to save her only child’s life.

That’s when Sharon’s luck shifted. One day, she visited a local lupus organization with the intention of buying a t-shirt, and she ended up walking out with a new job. Her new public relations position did not include benefits but being employed allowed her to purchase health insurance.

Although she had insurance, her share of the payments for her four medications was unaffordable; one of the therapies alone cost more than $1,000 per month. That’s when Sharon found out about the HealthWell Foundation from a Google Alert. HealthWell is a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog).

“Literally, HealthWell saved my life,” Sharon said. “I didn’t have to incur any debt, my mother didn’t have to refinance her house, and HealthWell saved the day.”

SharronHarris2

And Sharon wanted to save the day for others like her. She has become a leading activist for lupus awareness, starting her own advocacy group called Lupus Detroit, which offers lupus patients emergency grants. Sharon points out that there are two colors that are used for lupus awareness, orange and purple. She opted for orange for her organization because the color is “louder” and garners more attention. “Lupus needs all of the attention that it can get,” Sharon said.

Sharon is currently in remission and has been doing well since receiving a grant from HealthWell in 2011 that allowed her to afford her medications. “I was inspired by the work that HealthWell does to help people with their medications,” she said. “I just don’t believe that someone should have to choose between paying for their medication and feeding their children.”

And neither do we, Sharon. Keep up the excellent work.

If you are inspired to help, consider raising awareness during Lupus Awareness Month and showing your support. Here are some suggestions:

  • Make a donation to HealthWell’s SLE Fund in honor of a family member or loved one who is battling lupus.
  • Celebrate World Lupus Day on Saturday, May 10th.
  • Put on Purple on Friday, May 16th and visit The Lupus Foundation of America’s website at www.lupus.org to learn how you can show your support.
  • Find your local Lupus Foundation of America chapter to learn about activities in your area.

Has lupus touched your life? Do you have plans to show support during Lupus Awareness Month? Share your story in the comments section.

Categories: Cost-Savings