How Transparency Can Empower Patients and Fix Health Care

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Who's watching the health care professionals? A Johns Hopkins surgeon calls for a major paradigm shift.

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As patients, we don't know nearly enough about the care that we are receiving in our hospitals, and the closed door culture of medicine prevents us from gaining the tools to make vitally important health decisions, argues Dr. Marty Makary, who attacks the corporatized hospital culture contributing to unreasonably high rates of medical errors in Unaccountable, released yesterday from Bloomsbury Press (you can watch the intriguing book trailer here).

A surgeon and professor of public health at John Hopkins University who has already made innovations in the improvement of patient care, Makary draws on his years of experience -- and leverages his influential position in medicine -- to step forward as a whistle-blower. He shares striking anecdotes from a system gone wrong, where 25 percent of all patients are harmed by medical mistakes and a focus on the bottom line leads to overtreatment at the expense of quality care.

"We all know the health care system is broken, burdening our families, businesses, and national debt. It needs common-sense reform," writes Makary, who argues that this reform will be driven not by political sound bites, but by the consumer. "Transparency can empower their consumers to make their hospitals accountable and make the practice of medicine more honest."

I spoke with Makary about his decision to speak out about these issues and his vision of a reformed, patient-driven health care system.

You argue that you're talking about problems that everyone in medicine knows about, but that there's a culture of silence surrounding it all. Why are you speaking out now, and what are the repercussions of you bringing these issues to light going to be? Do we need to worry about there being an AMA version of a fatwah issued against you?

We need to address the massive differences in the quality of health care among everyday hospitals.

Well the way I see it is that, increasingly over the last couple of years, we as doctors have been much more open in talking about our problems. I'm part of a generation that's willing to admit that we as a profession have made mistakes that have resulted, in part, in a loss of the public trust. There's been more discussion about medical errors, which are now recognized in top journals like the New England Journal of Medicine to be occurring in 1 in 4 hospitalized patients.

I see the issue of quality to be one of those issues that we need to be open and honest about, and that doctors are starting to be open and honest about. The fact that a hospital with a good reputation can have a complication rate that's five times higher than another good hospital in the area -- that's a subject that gets little air time, and even worse, that the public doesn't know much about, because the public has no information to make decisions about where to seek their care. So they are walking blind into a hospital where research now shows the differences in quality are massive.

So I think the bigger subject is, if we're going to get serious about health care costs in the United States, we need to address the massive differences in the quality of health care among everyday hospitals. We're not talking hospitals on the brink of closing, or hospitals that nobody goes to -- we're talking about mainstream hospitals. And we need to address the 20 to 30 percent of health care that's unnecessary. I think talking about health care, without addressing the 20 to 30 percent of health care expenditures that are unnecessary, is just talking about how to pay for a broken system differently, and not how to fix the broken system.

The impression I got is that this is really a critique of the system, rather than just you calling out bad doctors.

Yes, we've got good doctors working in a bad system. Hospitals are told they need to fill their empty beds, so they fill their empty beds. Doctors are told they need to see more patients, so they see more patients. Surgeons are told to do more operations, so they do more operations. So everybody's doing their job -- the problem is it's a bad system, and we need to redesign the jobs.

A big problem, from the patient's end, seems to be that we just have faith that our doctors know what's best for us, and maybe don't know the right questions to ask of them. What could the consequences of undermining this authority, and giving patients more power, be?

The smart patients already have the power to get the best care. It's just that smart patients tend to be patients that are themselves doctors or nurses and who know how to navigate and ask the right questions. Or, they're people that have good connections. The reality is that probably the best metric of a hospital's performance is asking someone who works there where they would go, or to whom they would go, for their own medical care. And we've done that research now, and it shows that over 40 percent of hospitals have the majority of their employees saying that they would not go there for their own care.

Over 40 percent of hospitals have the majority of their employees saying that they would not go there for their own care.

That's useful information now being collected on a national basis. There are graphs that demonstrate the wide variation in where people would go for their own care. But the hospitals are de-identified on the graphs, and the information is not available to the public.

I believe that the American public has the right to know about the quality of their hospitals. It's already being collected, so why can't the public have access to it? We consider utility as part of the public domain, we consider the way the FAA monitors aviation to be in the public interest in maintaining safety. Why don't we consider quality in U.S. hospitals to be in the public interest?

Many professional doctors' groups have already developed sounds ways of measuring health care quality that appropriately adjust for how complex the patients are, and differences in how risky the patients are in the hospitals. And these sound ways of measuring quality are being used, but the information is not available to the public.

There are rare exceptions where we are starting to see this revolution in health care take place, and I'm not the champion of this revolution. I didn't lead this cause; I'm just describing it. But we've got consumer reports, and we've got the Society of Thoracic Surgeons now partnering so that heart surgery is now rated on a simple scoring system. But only 40 percent of U.S. hospitals have agreed to participate in this public disclosure -- arguably the best 40 percent. We've got infection rates now available on Medicare's website, but only for a small set of types of infections. So we're starting to see this revolution.

What about websites where people can review their hospitals and their doctors -- does this work at all, or do patients just not have enough insight into what's actually going on with their care?

We have an epidemic of poor quality care in America.

Both. We have found that patient satisfaction is one small piece of the quality of medical care. And while it doesn't speak to the overall judgment and skill set of the doctors, it does speak to the patient experience in the hospital, which is important at a time when the patient is vulnerable and sick and in need of medical attention. So patients like patient satisfaction scores, and hospitals like them as a part of the overall experience. We're not fooling ourselves to think that this is the end-all metric -- but we as doctors recognize that it's one of the many metrics [for judging hospital quality].

I argue that if we have just a couple metrics out there, we can do harm by getting hospitals to allocate the resources towards the public ones and not towards the important ones that are not public. When just infections are public, hospitals can put disproportionate resources toward making that number look better at the expense of other important safety programs.

So we need complications, readmissions, bounce backs, patient satisfaction, safety and culture survey scores -- I think if all of that information is public, patients will not have to walk into a hospital blind. They'll know about the quality of care in their hospital, and the hospital, most importantly, will be accountable. If they respond to outliers, the ultimate result will be an increased trust with the hospital and the community. That trust has been eroded over the past few decades, where we've seen a corporatization of health care, and that trust can be restored if hospitals are accountable for their performance with simple metrics patients can use to make these decisions.

Being this modern patient you describe, who needs to be an active researcher and a strong advocate for their health, and who has the time and the ability to shop around and find the best care, can maybe be asking a lot from certain people.

One basic thing which patients should know is how many conditions a hospital treats every year -- how many procedures they do every year, for example -- and what all their options are. The patients that are not interested in doing the detailed work of researching a hospital should at minimum ask a couple of basic questions I've tried to outline in the book to navigate the system: "How often do you see this condition here?" "Are there other options?" "Is there an expert in the area who specializes in this that would help?" "What if I don't do this diagnostic test or take this medication or undergo this procedure?"

But it is a complex maze, and it can be very challenging and daunting for your everyday patient. When they get appendicitis, they have to walk into the hospital, and they have to think about, "Am I getting the right care?" But the reality is that 60 or 70 percent of appendices removed in the United States are removed through a minimally invasive, laparoscopic technique, and the other 30 to 40 percent are removed through an open incision. And the outcomes are different. For a basic presentation, under the classic hallmark procedures of a general appendectomy, there's wide variation in which operation you will get.

So it's important for people to know all their options. There's a reason why 30 percent of second opinions differ from first opinions.

Excerpts I read from your book made me afraid to even get near a hospital. Do you think that this book is going to scare patients, and is that what they should come away from it with?

No, absolutely not. It is a delicate subject -- patients can be easily scared, and the media can easily sensationalize this topic. I tried hard to balance the book with a success story or hero for every problem or issue. I highlight doctors who are doing highly innovative things, hospitals that are improving quality by bridging the gap between their management and their frontline doctors.

With my position as a laparoscopic, pancreas, and G.I. surgeon at Johns Hopkins, I feel like I may be in a good position to speak openly and honestly. Because there have been a number of doctors and nurses fired for speaking openly on this subject. I mention one or two in the book, and recently a Florida nurse was fired by HCA for calling out someone on overtreatment, even though an internal investigation substantiated the claim. So there is this culture which I think we're fighting, but things are looking good and positive. These new metrics are now being reported, so hopefully that's a good start.

We can choose to turn a blind eye to the problem, but the reality is we have an epidemic of poor quality care in America. We have an epidemic of medical errors. We have 42 percent of doctors in the United States with burnout, according to a recent study. So these are not my opinions, these are issues that we can ignore or issues that we can deal with.

I believe that, first of all, unless we can talk openly or honestly about the problem, we can't fix it. And second of all, it's not hospitals or regulators or insurance companies that are going to fix health care. I believe it's going to be the patients.

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Lindsay Abrams is an assistant editor at Salon and a former writer and producer for The Atlantic's Health Channel.

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