It might be said that last year Americans finally began paying attention to the price of their healthcare. Maybe it was the focus on Obamacare, or the Great Cost Shift and the realization they now had to pay more of these out-of-the-ballpark prices themselves. But journalism deserves a lot of credit, too, for shattering that long-held, erroneous belief that whatever we pay is justified because we get high quality care in return. From work in legacy media—like Elisabeth Rosenthal’s ongoing New York Times series, “Paying Till It Hurts” and Steven Brill’s 2013 opus in Time—to social media like Reddit—from which a 20-year-old outraged Californian’s $55,000 bill for an appendectomy went viral late last year—journalism is helping the public realize the cost of care is simply too high.
I sat down with the Times’ Rosenthal, herself an emergency room doc, to talk about what journalists and the public can learn from her series, which began early last year and so far has included six major pieces and more than 10 follow-ups.
What inspired the series?
I was covering international environment and had just returned from the Arctic when editors asked if I wanted to cover the Affordable Care Act during the 2012 election. I didn’t want to do that and said so since I was pretty passionate about environmental issues and few others were covering them. But I said if you let me do a series on pricing and costs and why American medicine costs so much compared to the rest of the world, I’d drop everything to do it.
How does the public tend to look at medical costs?
People tend to look at the price tag for big ticket items such as the half million dollar cancer drug and express amazement; but then they just hope it won’t happen to them. I didn’t want to look at rare medical events but instead at encounters that everyone relates to. I wanted to get people energized to understand the costs and financial incentives. So I focused on ordinary procedures and conditions like colonoscopies, asthma, pregnancy, having a minor skin cancer removed, and getting stitches.
What was the main take-away you wanted for your readers?
I wanted them to understand the incentives that underlie the system and that inflate costs and force us to choose the most expensive way of doing things. I put a lot of thought into those market failures and how we got there. Someone once said we got the system those financial incentives were designed to create. My series started from there.
How did you find patients to profile?
At first I went to NGOs and patient advocates. Everyone had a certain bias and a lot of their files were old and not very useful. So I decided to take another route using reader engagement and social media. To get patients, I did a 400-word story [in February 2013] to say I’m open for business and posted it on the Times’ Well blog. It told of a small study about how hard it was for a patient to get pricing for a hip replacement, and we asked readers if they’d like to share experiences with medical costs. In a few hours we had 500 responses. We didn’t get anyone on the Well blog complaining about colonoscopies, which I wanted to lead off the series, so we put out a tweet on the Times Twitter feed. It was out for 30 seconds and Deirdre Yapalater showed up and eager to describe her $6,385 colonoscopy.
Did you get any patients from the Well blog post?
Yes, I used it to find patients for the piece on hip replacement surgery. That’s how I found Michael Shopenn who turned out to be a great story teller for the piece on why hip replacements cost so much.
When you get lots of responses, how do you choose whose story is best for your piece?
I feel like a movie producer. I would have conversations with prospects since I had their emails. Some people were happy to talk; others weren’t. For this series it was hard work for the patients. They had to show their bills and be willing to have me call their doctors and hospitals, and they had to be willing to be on the front page of The New York Times. Everyone had to be willing to use their full names. The point was to find someone just like other readers who were experiencing the same problems with the cost of a procedure.
Other advice for finding patients?
Try everything. In my early flailing days I looked at chat rooms. But many patient groups are financed by Pharma. If you go to a chat room sponsored by Astra Zeneca, you end up getting an inhaler so that sample was biased, and it’s hard to find patients’ real names and contacts. I looked everywhere, including standing in a parking lot of a physical therapy office looking for patients in a town in Pennsylvania that seems to have PT practices in every shopping mall. PT can be very lucrative these days because there’s a lot of self-referral by docs. But it was a cold day and I didn’t find a willing candidate or at least not one who would have carried the entire story.
Any other social media successes?
For the story about the high price of stitches to sew up pretty routine cuts, I used The New York Times Facebook page asking if anyone had experience with high-prices for minor medical procedures. The first attempt did not get much response. The second one did. That’s why I say the gods of reporting were with me. It was partly fortuitous and partly casting a large net.
Besides finding the right person to carry the story, what else do you do to prepare?
I read a lot. I can’t imagine not reading. I do MEDLINE searches [The US National Library of Medicine’s medical journal database] on everything. It’s important to know who’s writing what in the field. Medical journals make it easy for me. I don’t know what I would do without a MEDLINE search. It gives me a framework for the story. I go through the papers in the journals to see who’s doing interesting work. That means you don’t have to go back to the same source twice. That enables me to sort out whether what I am hearing is a function of the expert I happen to call. There’s also a lot of trade literature about the business of healthcare.
As time went on, did the responses you got help you refine your methods for subsequent pieces?
The first piece in the series on colonoscopies generated more than 10,000 comments. We knew we had touched a nerve. We learned a lot from the comments. I felt as the series went on, reading the comments was sometimes even better than reading the story. It got me thinking about the next issue I needed to report on—or something I might have missed. That’s why we started doing follow-up stories.
What specifically did you learn?
For reader engagement, we learned how to frame questions to get longer and more thoughtful responses. We found some questions were not good to ask. You have to ask what you want to know and what people really know. If we asked, “How much should a hip replacement cost,” how would they know? You won’t get a smart answer to that. But ask, “If you’ve had a recent surgery, what aspects of the bill surprised you,” you’ll get a treasure trove of responses.
What’s an example of a bad question?
At the beginning of the Pharma story, we asked, “Is there a drug you cannot afford?” That wasn’t such a good question because it led to one-word answers, and since it was the very beginning of a long story on asthma inhalers, more than 95 percent of respondents complained about that. The response wasn’t enlightening or engaging either.
Was the series a local or a national story?
I felt strongly I didn’t want this to be about one hospital or one doctor. The idea was not to produce a local story but an economic one that applied across the country. The same problems found at one hospital in California are typical of others in the state and everywhere else.
What’s been the response from the medical establishment?
Healthcare money has infiltrated the healthcare system, and that’s not good for patients. There’s pressure from hospitals and insurers not to have a different kind of payment system. There’s been pushback on every story especially from the health systems’ people whose doctors were spotlighted. They want to know why. The answer is bad luck. Patients like their care but don’t like the cost.
Does any group stand out as being particularly aggressive in pushing back?
There was incredible push back from dermatologists on the story about Mohs surgery [a procedure that involves slicing off a skin cancer in layers under local anesthesia]. The American Academy of Dermatology sent a long letter to the editor and letters to their members. They told them not to talk to the press and refer all questions to their trade association. But I also got letters from dermatologists at the NIH and in academic centers saying, “I want you to know you are right.” So that was very heartening. There are many highly committed doctors in this system who are as frustrated by the pricing as patients.
How would you characterize the pushback from the medical establishment in general?
Probably a lot less than I would have expected. There’s been an awful lot of silence. The hospitals and doctors know they are in the cross hairs now. Everyone knows or feels change is coming. They are nervous about it and hoping it won’t be big change. And as I said, there are plenty of doctors who are unhappy about the profiteering, too.
How did patients react?
At first patients say, “I have this great doctor; he has coffee in the waiting room.” They look at their own micro-experience. They focus on the things they can understand. But often people don’t know if they got good care. It’s hard to know. When people have something done, they tend to assume it’s life-saving. It will take a population approach to sort this out. Are you getting good medical care, or too much care—high-end care that makes no difference for your health? What I do know is when they open their ever-rising medical bills and face ever-rising premiums, they are shocked and feeling the economic pain. They want to know why it costs so much. And they are frustrated and outraged that no candidate has made this an issue.
What needs to be done?
There needs to be a change in the incentives whether it’s a move to more marketplace intervention—a real market—or a single payer, national health system. I would like people to know what the options are, and once they understand the origin of our high-priced system encourage a more open discussion of what kind of system they want to have. But this is not an issue people get to vote on. Very few people are happy with the system they have. The question now is, how do you translate a snowballing sense of outrage in the community to political action?
How do you see your job in the context of changing the system?
My job is to start a very loud conversation that’s difficult politically to ignore. The medical associations, the doctor groups have spent a lot of money to lobby. There’s nothing that’s equivalent on the patient side to reflect how patients feel.
There have been a number of steps groups have taken to attempt a conversation. What are your thoughts on those?
There are some easy first steps like making hospitals publish a Chargemaster, a list of its retail prices [which almost no one pays]. But it is not a final answer. Transparency only gets you so far. If all a hospital had to do is say what they charge for gallbladder surgery, patients still have to figure out what the surgeon and the anesthesiologist and the radiologist will bill. Those are all separate bills in our system. And you need a better way to judge how the hospital compares to others in terms of patient management.
What would be more powerful and effective to bring about change?
Why can’t politicians take on a more adversarial position with the health industry? Take the medical device makers who want to repeal a tax on their products that was mandated by the ACA. Look at members who have supported the repeal—Elizabeth Warren and Al Franken—I assume in part because they come from states where device makers are powerful. They didn’t stand on principle. Healthcare money has infiltrated the system. That’s not good for patients. The real yardstick is does the system do a good job for patients, but that’s not the metric we use.
What is the metric we use?
Well, that’s the problem. We have no metric and no agency that’s really looking at the big picture for patients. Think about it: The FDA just judges drugs safe and effective. The patent office certifies that they’re novel and so deserve a patent. But no one says, is this really better than what’s already available in terms of patient health, and should drug makers be able to charge four times more than in any other country here in the US? I’ve heard from countless doctors who are frustrated that their patients—even those with insurance—can’t afford the medicine they prescribe.
Is this current emphasis on the high cost of care a journalistic breakthrough?
Journalism is like the Supreme Court. It follows as it leads. Interest in costs is bubbling out there, but it’s unfocused and most people don’t understand the origin of our high costs. I like to think one service of journalism is that it educates, explains and helps organize those vague concerns bubbling in society. I think—I hope—“Paying Till It Hurts” articulates the problems and choices faced by American healthcare, and by doing so sets off an informed national conversation that will lead to action. I sense that is happening as I’ve been speaking to policy groups and medical schools all over the country.
Why the interest now?
There are a lot of reasons why healthcare pricing is coming to the fore now. The ACA has made people think about healthcare more. And more people have high deductible plans, so they’ve feeling more of the costs. We’re following the frustration people have with the system. We are also leading and causing people to question when they see this crazy money tossed around. We’re also promoting understanding that some of the health systems we’ve demonized for so many years are dealing more effectively with these issues. I hope we can corral this outpouring and spark some kind of effective movement or pressure. Hopefully someone will figure out a way to continue this momentum. Legislators are seeing there’s pressure and momentum.
How should journalists be covering this?
I think the voice that journalists need to represent is that of the patient. Is this plan delivering good care at a price that people (and the country) can afford? That’s all that really matters and other countries manage. It’s that classic journalistic mission of giving “voice to the voiceless.” Well, no one else is representing patients in our system these days.
How can journalists keep the story fresh?
That’s a bit hard because our system will likely take a long time to transition. But patient stories and good characters are always compelling. That’s why so many physicians become novelists. Also, our healthcare market is broken in so many ways there are an endless number of stories. My dilemma this year has been which to do first and which can wait.
How are you going to continue covering this? More stories? More follow-ups?
We’d originally planned six in 2013, but we are continuing the series into 2014 after realizing how much there is to do. Although the focus has been on the six long, front-page narrative stories so far, I’ve also written news analyses, blog posts and five stories for the Sunday Review. Some went in the paper; a few went online only. Some were conventional stories. But the series also included data-driven interactive graphics and video clips of patients I took on my iPhone. The series also contained some quirkier elements like an online quiz asking readers to view a series of photos and decide if each was taken in a hospital or hotel. The idea was to get readers thinking about how much American hospitals spend on hotel-like amenities rather than healthcare. One of the great things is how many tools journalists have to tell stories these days.
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