In 2012, ProPublica reporter Marshall Allen came across a staggering statistic: The U.S. health care system wastes an estimated $765 billion each year. That’s about a quarter of the total amount spent on health care and more than the entire budget of the Department of Defense. The statistic stunned Allen, who regularly covers health care and patient safety. It also gave him a new way to look at his beat. Perhaps politicians and journalists alike have been approaching the soaring cost of care and the challenges of expanding insurance coverage from the wrong perspective.
Last year, Allen decided to root out the sources of squandered funds within the system—an investigation that culminated in a series called Wasted Medicine. Allen discovered how hospitals discard unused medical supplies, how some drug expiration dates are meaningless, and how drug companies knowingly make oversized eyedrops—a story that prompted a group of U.S. senators to introduce legislation to reduce wasteful packaging of medicines.
And in his November 28, 2017 piece, “A Hospital Charged $1,877 to Pierce a 5-Year-Old’s Ears. This Is Why Health Care Costs So Much” (co-published by ProPublica and by the NPR Shots blog), Allen digs into the problem of health care providers pushing procedures their patients don’t even need. This story grew out of a tip from Margaret O’Neill, who accepted an offer to have her daughter’s ears pierced during a routine surgery at a children’s hospital in Colorado, only to be later stuck with an exorbitant bill for the perk. Then there’s Christina Arenas, an attorney who, after seeking treatment for common cysts in her breasts, was put through a mammogram and several ultrasounds that experts say were unneeded.
Allen’s story recounts these and other examples of unnecessary treatment, including data showing that hospitals are delivering costly intensive care to patients who may not even need it. But his reporting also equips his readers to be more critical consumers of their own care. This is partly because he gets into the nitty-gritty of each case, wading through dense medical records and talking to a host of experts—all while weaving a clear and compelling narrative. Here, Allen tells Rachel Zamzow about what inspired him to tackle the gargantuan topic of needless health care spending and how he found real people to make his story come alive. (This interview has been edited for length and clarity.)
What inspired you to take on the topic of waste in the health care system?
Back in 2012, I was really captivated by this Institute of Medicine report that was looking at the high cost of health care and the lack of value in the health care system. They estimated the wasted health care spending was $765 billion a year, which at the time was larger than the entire budget of the Department of Defense. We have the most expensive health care in the world, and our quality [is] lower on a lot of metrics than most developed countries around the world. So I wrote a short piece on that—really almost more like a blog post—but I had always kind of had that in the back of my mind.
At ProPublica, we try and focus on one big project a year, and we try and dig really deep on a topic and find something in the public interest, and then chew on that with investigative stories. I had remembered this report, and I wanted to bring that up again because I thought that’s a really interesting way to frame the whole debate about health care cost and the rising cost of care. I wanted to focus on this issue of wasted spending, and if we could reduce [it], we could provide insurance to a lot more people, and all of us wouldn’t have these crippling out-of-pocket costs and high deductibles and ridiculous health insurance premiums.
How did you distinguish your story from the countless others about health care costs?
There have been a lot of stories done on this topic—other news outlets have done some really strong stories on helicopter rides and other types of unnecessary care. Shannon Brownlee has this amazing book, Overtreated, which I would highly recommend. So I definitely didn’t want to make it sound like I was the first one to ever report on this. I think framing it in terms of “waste” is kind of my main strategy with this whole project—that’s just one thing that’s a little unique about what I’m doing. Everyone in the health care community wants to be polite and use these euphemisms for what it is, and what I want to do is change the way we talk about these things so that we make it really clear that this is our money and the medical community is blowing it.
As always, the anecdotes make this story more compelling and the topic more tangible. How did you find the patients whose stories you included?
We put out this notice that ran with my first story that says, “About $765 billion is wasted each year on health care. Can you help us find it?” And there, I was just blatantly soliciting tips. When we started digging into issues related to patient safety, we started the ProPublica Patient Safety Facebook group. That was about six years ago, and I still moderate it today. The group has about 5,500 people in it, [including] patients who have been injured while undergoing health care, and I asked questions in there about it. So really, just trying to cast open the doors and ask anyone to come in with any tips.
I got an email from this woman, Margaret O’Neill. She is the mother whose daughter went into the hospital to have this elective procedure, a frenulectomy [also known as clipping of a tongue-tie]. O’Neill had accepted the surgeon’s offer to pierce her daughter’s ears during the same surgery, not knowing she would later be charged $1,877 for this extra step. As soon as I heard that story, I was like, that’s something I need to find out about. It’s such an attention-grabbing example of high prices and also of unnecessary care. I knew that would be my lede, because it’s just too eye-catching and unusual. Then I was like, here I have this extremely sensational example, but this is not common. Hospitals are not commonly piercing kids’ ears.
So I heard about this woman, Christina Arenas—through one of our editors here, actually. It was, again, related to overtreatment: her allegations that she had received too much imaging that she didn’t need for these cysts in her breasts. I just really liked that example because I think so many women have had that experience.
I try to help patients and families understand what [participating in stories like this] is going to entail. It’s a big public service for people to participate in these stories.
What is it like for patients and their families to participate in stories like this, where you dig into the details of their medical cases?
Our reporting is kind of a little bit grueling. We ask all these questions. We want all their records. We end up asking for details to try to make the narrative more interesting. Then we fact-check. The whole fact-checking process is a whole separate piece of it, and I think, sometimes, it’s a lot of work [for sources]. It’s a burden on the patient who’s in the story. I’m kind of apologetic sometimes to some of these patients and families because they just have no idea what it’s going to be like to do one of these stories. Like, think about all the personal information I’m asking for—here they’re telling me their personal medical history, and I’m checking everything, so I’m questioning them. I’m not being confrontational, but I’m just trying to help them understand I’m going to independently verify everything they’re saying, not because I don’t believe them, but because my story will be more authoritative if I can actually independently verify all these things. So I try to help them understand what it’s going to entail. It’s a big public service for people to participate in these stories.
You mentioned that you ask your sources for details to make the narrative more interesting. What kinds of details were particularly important to you for this story?
So I remember with Margaret O’Neill, I wanted to know how much she spent to get her [daughter’s piercing redone]. The ear piercing was not done right, it was off-kilter—that was such a good kicker. I know she had it redone, but it’s a lot more colorful if we can say she had it done at the mall for about 30 bucks. So I needed her to tell me that specifically. And I didn’t know that I wanted that particular piece of information until after we had written the draft and realized that the kicker is going to be much better if we have it more specific.
Another detail that I thought was kind of a fun one was that the earrings were these little stars. I was out in Colorado this summer visiting my family, and I got together with [O’Neill] and her daughter in person. I would have loved if the little girl could have been on the record, because she was this extremely precocious, very adorable young kid. It would have been so fun to include her and do an interview with her, but the mom didn’t want her name in the story, so I understand that. But I did have her bring the earrings, and they were these little tiny gold stars—which, again, it’s not an important detail, but I think it’s kind of relatable.
These are obviously very smart women who are assertive, who know how to advocate for themselves, and yet they’re as vulnerable as anybody.
Another thing I really liked about both of these case studies: Both of these women were attorneys. I think that’s really an interesting detail. I didn’t go into it or do a whole paragraph about it, but here you have these very educated, professional women who both got kind of sucked into this system where they were powerless, where no one was listening to them even though they were speaking common sense, and they were taken advantage of. These are obviously very smart women who are assertive, who know how to advocate for themselves, and yet they’re as vulnerable as anybody.
How did you gain access to and decipher the patients’ medical records—for example, in Margaret O’Neill’s daughter’s case?
I had her send me her medical records and her billing records. A patient has a legal right to their whole medical record. If the patient is cooperating with us to do a story, they can request their entire medical record, and then they can give it to us. Then we have an independently verified document of what happened to them, or at least what the medical provider says happened to them.
Another thing I do is send the records back to the provider, so they see that I’m trying to get a really fair and honest understanding of what happened. And also, if for some reason the patient sent me some fake records, it would protect me that way because I would be sending the records to the provider. So, I never take a patient’s point of view alone on these kind of things. I always verify it with the medical record or with the providers, and, in this case, the providers didn’t talk to me.
You have to really wade through a lot of complexity in reading the records, and you don’t ever want to misread something. I never make my own read of something the authority. If I need to, I’ll share [the actual records] with experts, with the permission of the patient. But a lot of times, if I can understand pretty clearly what it says, I can just talk about the case and discuss the issues in the case with the experts.
Also, I made sure that [O’Neill] would give clearance to waive her HIPAA privacy rights. To make that happen I typically call the doctor or hospital and tell them I’m doing the story, and they typically have a form they send to the patient to complete. Sometimes I’ve had a patient sign a generic HIPAA waiver form I’ve found online. That’s kind of a standard thing I do with any patient I feature in a story. HIPAA precludes providers from ever talking to us about a patient’s case, but if we get the patient to waive HIPAA, then [providers] can’t hide behind it. It kind of paints them into a corner where they have no excuse not to talk to you. It protects me from just hearing one side of the story.
Except, in the case of this story, the providers never did talk to you, right? How far did you go to try to convince them to talk to you?
I urged them to talk to me on multiple occasions. They would keep emailing me back saying, “We just can’t talk to you about this.” And I would write them back, and I would say, “Actually, you can talk to me, you’re just choosing not to.” I happened to be in Colorado back in November, and I even drove out to Children’s Hospital and dropped a letter off for the surgeon. At least it brought her to a point of saying, “No, I won’t talk to you.” But in a way, it was challenging only because I wanted it so bad. I really wanted to get their point of view on it, and they just refused to talk to me.
The last thing I want to do is do a story that’s wrong. And so when I call them, I’m not just sort of leading them to tell me what I want to hear.
With the ear piercing, I didn’t have to call a lot of experts to nail down that that was unnecessary—that was so obvious. But with the mammograms and the ultrasounds, that’s a lot more complicated and is a lot more nuanced, and so I had to run that by lots of different experts. I talked to five different radiologists—three of them were on the record, two of them were off the record. And then I talked to one OB-GYN from the American College of Obstetricians and Gynecologists (ACOG).
I also had guidelines—like the American College of Radiology puts out guidelines on this, and ACOG also had some guidelines. So I had the guidelines, and then I had the experts, and all of them kind of helped steer me to the right kind of answer on it.
I think you definitely want more than one expert, because reasonable experts can disagree on things. You really want some consensus, so I think you need at least three. And honestly, when I talked to these people, part of my goal was to disprove my thesis more than prove it. The last thing I want to do is do a story that’s wrong. And so when I call them, I’m not just sort of leading them to tell me what I want to hear. I’m honestly asking them to correct me if I’m wrong.
[One thing] I would recommend for anybody who covers science or health: We have what we call a provider questionnaire. [Here,] I’ve just asked experts who are willing to be sources for me to just send me an idea or send me their name and email. I have hundreds of people in this database, so when I need a radiologist, I can just go to that. It’s like I have this bank of experts that have already opted in as my sources, and so it makes it so much easier when I need someone to review a case or review records. Also, that creates a database of people who I send my work to. I know they care about these topics, so then I’m kind of feeding the source pool with ongoing information about my reporting. Then when I do call them, they respond, and they help me.
Let’s talk about the stats you have in your story. Obviously, the $765 billion in waste is staggering, and it sounds like it was the impetus for this project. But you have some other really great numbers in the story, too. What are some you found particularly telling, and why did you include them in your story?
I think with any of these things, you have this individual case study, but you always want to show the scope of it and how broad and how widespread it is. So with unnecessary mammograms or breast screening, there’s that Health Affairs study that estimates the cost of false positives and overdiagnosed breast cancer at $4 billion a year. We don’t know that that’s directly related to [Christina’s] case, but I was just trying to make the point that overtreatment related to mammograms is common.
The most amazing one to me was the intensive care unit (ICU) unnecessary use. I never realized until I read it in the UCLA study. Here you have this doctor at UCLA who has made this part of his research to identify all of this nonbeneficial ICU care, where patients are either too healthy or too sick to benefit from the ICU. They cited a different study that said that intensive care makes up 4 percent of our overall health care spending, which is an astounding, huge amount of money. Their team estimated that maybe half of that is unnecessary, so you’re really talking about tens of billions of dollars possibly being wasted. What I wanted to show is that these are big-ticket items. It’s not just an ear piercing. There are other cases and other examples that are routinely done. It’s not something that’s an odd thing—this is really the way business is done.
How did this story change during the editing process?
Well, I have a great editor, Tracy Weber, so it definitely got a lot better. If you just read my raw writing, it can be a little too boring or a little too in the weeds. I’m so careful and cautious about being accurate that it doesn’t have as much sizzle as it could. One thing Tracy’s really good at is livening it up. It didn’t change structurally. I knew the ear piercing was going to be the top. I knew that I was going to go into this broader issue of overtreatment and using care that’s more expensive. The information didn’t change, but she made it much more lively.
My goal is to always write every story from the point of view of the patient and always find real people to highlight in the story.
What is something you always keep in mind while reporting and writing health care stories like this one?
Everybody has a different sort of strategy or philosophy about this. My goal is to always write every story from the point of view of the patient and always find real people to highlight in the story, because I think it will resonate with the audience a lot more if the audience is a common, everyday person. And also, if it’s a medical provider [reading the story], they’ll hear a patient’s point of view. So that’s always been my approach to the beat: I want to show how real people interact with the health care system and get taken advantage of.
Rachel Zamzow is a TON fellow sponsored by the Burroughs Wellcome Fund. She is a freelance science writer based in Waco, Texas. The brain is what makes her tick, so most of her stories have a psychology or neuroscience slant. But she’s always interested in anything new and exciting science has to offer. She’s written for a variety of publications, including the award-winning autism research news site Spectrum and The Philadelphia Inquirer, where she was a 2014 AAAS Mass Media Fellow. She tweets @RachelZamzow.