Economics + psychology + superheroes = revolutionary treatment for really sick kids
WASHINGTON (7News) – 16,000 children are hospitalized every day in America.
One of the biggest costs to the system and challenges to their care is helping these kids comply with their treatments, whether it’s taking meds, getting an MRI or dealing with the stress of a long stay.
An innovative D.C. program, born out of one family's tragic loss, is using incentives and gifts to transform the hospital experience for children, improve medical outcomes and save millions of dollars.
Oncology nurse Rose Simpson has seen it first-hand, but not while caring for her adult patients.
"Last year in January my daughter was diagnosed with leukemia,” Simpson said.
Her 8-year-old daughter, London, heard words no child should ever have to grapple with.
"I just screamed 'No, that's impossible!" said London Simpson, now 10 years old. "I couldn't believe it I guess."
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Within hours of her diagnosis, treatment began.
And with every biopsy, scan and blood test, Rose and her husband Jesse realized they were fighting far more than cancer.
"In order to get treatment, she has a little port in her chest and it gets accessed with a rather large needle," said Rose.
They had missed a couple of times and it can be painful and it was getting traumatic and London just was done. We were carrying her to the car saying, ‘We have to go and we have to get access and get your chemo today' and she'd be yelling, 'I don't care. I'm giving up. I can die.' As a mom hearing that was very hard.
The fear and pain London associated with treatment would threaten the very therapy she needed to survive.
"I felt so bad and I didn’t want to feel any more pain," said London. "I guess I just didn’t want to do it anymore."
The Simpsons were not alone. Tens of thousands of parents, doctors and nurses every day find themselves with the hard task of convincing a child to endure difficult and painful treatment.
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"Children are not young adults," said Dr. Aziza Shad, as we sat in her office surrounded by framed photos of the kids she's treated. Shad is the Chief of Pediatric Oncology and Hematology at Sinai Hospital of Baltimore.
"Children are terrified and extremely anxious," said Shad. "If you cannot engage a child in his or her treatment, your job is far more difficult."
That's where Hope for Henry comes in, a one-of-a-kind program started by Laurie Strongin and her husband, Allen Goldberg, after they lost their 7-year-old son, Henry, to a rare disease.
The program, now in 15 premier children’s hospitals, has reinvented care for seriously ill kids by engaging them in their treatment, explaining what’s going to happen and allowing them to make choices to get the care that earns "Henry Bucks” for accomplishing anything from taking medicine to getting an MRI.
“Henry Bucks” buy really cool prizes.
"I could go in and I could get it done and I would know what’s happening and I would get a prize for it," said London.
We asked her if she felt stronger for doing it.
"Yeah," said London. "I felt like I was taking stuff into my own hands and not mom taking me and like me knowing nothing. I could do something."
If this kind of incentive feels familiar, look no further than the nationwide lotteries and giveaways to encourage COVID vaccines.
The underlying principle is called behavioral economics, or getting people to make better choices for themselves without restricting freedom of choice.
Richard Thaler is considered the godfather of behavioral economics. He won the 2017 Nobel Prize for his work and couldn’t have been more pleased when we told him these principles were being used to save kids’ lives.
"I'm very happy that they’re doing this, said Thaler. I hope more hospitals around the world follow their lead."
Thaler says if you want people to do something, make it easy, and even better, make it fun.
"Getting chemo is not anybody’s idea of fun, especially a kid," said Thaler. "So anything you can do to make that process a little less scary and a little bit more fun and give the kids some agency is going to help."
Superhero visits, magic closets and awesome prizes get kids to comply with treatment and give hospitals and insurance companies a bottom-line incentive.
One example: Hope for Henry has dramatically reduced the need for sedation before an MRI.
"So how does that translate into what a hospital or an insurance company's looking at?" said Dr. Shad. "Think about the cost. Number one from a patient standpoint of safety, because the child's not getting sedated, meaning fewer complications because the child's not getting anesthesia. From a hospital and from an insurance company standpoint, the cost of the anesthesia, the cost of the anesthesiologists, the time that it takes for the anesthesiologist to do it, you are saving thousands of dollars by doing one non sedated MRI. So, is there an economic benefit to a program like Hope for Henry? Tremendous."
In its 18 years, Hope for Henry has saved hospitals millions – but it's given kids and their families something far more valuable.
"I love that “hope” is in Hope for Henry," said Rose. "That's what it gives the kids and the families because we're all looking for that when you just don't know what's going to happen next."
