Dr. Martin Makary is chief of Islet Transplantation Surgery and a professor of Health Policy & Management at John Hopkins Bloomberg School of Public Health, in Baltimore, Maryland, as well as a medical commentator for Fox News and NBC’s TODAY show. He created the surgical checklist later made popular by Atul Gawande’s The Checklist Manifesto (New York: Picador, 2011), and chaired the World Health Organization’s technical workgroup on measuring surgical quality worldwide. He is a vocal proponent of transparency in all realms of healthcare, from hospital infection rates to surgery outcomes, to procedure costs.
In 2012, Makary wrote Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care (New York: Bloomsbury Press) and is happy to see some of the ideas from his book now coming to fruition. His newest book, Mama Maggie: The Untold Story of One Woman’s Mission to Love the Forgotten Children of Egypt’s Garbage Slums (New York: Thomas Nelson Press), appeared in March 2015. Generations spoke with Dr. Makary in February 2015 about transparency and how it might contribute to consumers more easily managing their own healthcare.
Generations: In your book Unaccountable, you discuss how difficult it is for consumers to get access to treatment costs, error incident rates and complications, or infection rates at medical facilities—all key considerations in making well-informed decisions.
Have you seen an improvement since the book came out, and what will it take to remedy this situation?
Martin Makary: Yes, actually I have been very pleased with the incredible momentum in this field to call for more transparency. Soon after the book came out, I had the privilege of testifying in front of Congress and, months later, Medicare released cost data and, over the past year, sequentially released more data in the spirit of transparency. Plus, organizations like ProPublica have been able to do analyses and come up with valid patient tools to find out which doctors are cost outliers. Patients can now look up a doctor through ProPublica, Consumer Reports, etc.
There is a homegrown movement by cardiac surgeons to make data transparent; the surgeon’s association has chosen to voluntarily put up surgical outcomes. It’s impressive to see such a movement among doctors, and those interested in healthcare quality, to develop simple tools representing positive change to make healthcare medicine more transparent, and to make hospital performance levels more transparent.
The thing I’m most concerned about is that such metrics don’t unfairly punish doctors working in high-risk areas or with high-risk patients. It has the potential for making doctors who work with high-risk patients look bad be- cause of poor statistical analysis, and the potential to unfairly reward doctors who don’t work with groups that are high risk.
It’s important for doctors to be actively involved in quality metrics, and we’re seeing this in the field. I’m very pleased that ideas I put to paper are no longer controversial. We no longer think we should go back to having Medicare hide data, no one’s saying Medicare should not dis- close costs because of Dr. [Andrew] Brill and other people calling for transparency with bills, pushing movement toward global marketing transparency.
G: How do you think older adults should become more informed about their care ahead of time, and what sort of resources are there for finding not just medical error and complication rates, but also procedure costs?
MM: I think it’s important for people to know that despite tremendous strides in making healthcare more transparent, and the shared decision-making movement, and despite Google providing education, there still is no metric available on the Internet that is better than the word-of-mouth recommendation of a nurse who works at hospital, or a doctor’s colleague, or a series of former patients. There is nothing better than word of mouth to give a firsthand perspective of a doctor’s quality. The truth is that doctors may take on elders who are at higher risk, and those doctors might be doing more appropriately and better than the public-reported metrics. Public-reported metrics add a ton of accountability, but it’s important to know what we have available—that what the public sees represents a small fraction of overall quality being administered.
G: Some hospitals have begun to publish quality information on their websites, but it is hardly the norm. What will it take for hospitals to become more transparent, and what will cause them to publish error/complication/infection rates?
MM: There are reporting requirements that hospitals are participating in, but what’s more interesting is the enthusiasm of those performing well to put forth outcomes. Hospitals are reporting outcomes across services lines; they’re doing this voluntarily at the University of Utah, and the Cleveland Clinic publishes patient satisfaction and doctor satisfaction on their websites. We have seen a global improvement in patient satisfaction when medical centers make such information available. The public is not interested in someone who is 1 percent or 5 percent better than the next guy; they’re interested in going to a place or to a doctor who has the spirit of total transparency. When I tell patients it’s sometimes good to get a second opinion, and don’t feel bad if you choose another doctor, they like that offer so much that often they will choose to have their surgery with me.
G: A new report came out recently about Medicare penalizing a large number of hospitals for infections and mistakes. Is this a good approach, or might it cause hospitals to be less forthcoming with that information?
MM: We have disproportionately been placing financial incentives around things that are easy to measure, even if they’re not a large component of the overall burden of preventable harm in hospitals. It’s come at the expense of not pay- ing attention to things that are hard to measure.
Most hospitals are doing pretty well when it comes to infection, there’s global improvement, even among hospitals not participating in quality or safety programs; there’s better technique, greater awareness, and a recognition we were overdoing it with central lines.
But incentives need to be broadened so they’re not focused on a number but on the global value that hospitals are providing. I worry over metrics that are not appropriately risk-adjusted—that they will harm those taking care of more difficult, more poor populations. It is well-established that poorer populations have higher admission rates than wealthier patients. Are we being unfair? Absolutely. Transparency is a delicate science. If we approach transparency in a raw, unadjusted, unscientific fashion, we can have the reverse consequence of its intent.
G: When you testified before Congress in 2014, you said that there were more than 150 registries that track patient outcomes, a quarter of them taxpayer-funded. And yet, only 3 percent make outcomes available to the public. Why, and what can be done about it?
MM: It’s still true. There’s a lot of work to be done. The first step is to amend the way we measure our performance in healthcare. It’s underdeveloped. We don’t even collect variables to measure, to do analyses—the first step is to create structure.
A lot of patients are undergoing robotic surgery, and when the FDA approved it, and surgeons started using it, no one having that surgery was being tracked. There was no registry. Even though it was a new device with rapid adoption. Are people doing better or worse? We started having the debate after operations were underway. Maybe patients are being harmed by this robotic surgery—by inadvertent injuries? Some said it’s better, others
said it’s not better, but the question is why are we having these debates after ten years of these operations? We should have had these debates in real time, and we would have if the outcomes were being measured, but it’s so rare in the United States to track such outcomes.
We looked at registries in a paper coming out in the Journal of Healthcare Quality, and only a fifth of specialties even have a registry, only 3 percent make that data available. Cardiac surgery is one of those examples, and there have been a lot of benefits. In the transplant surgery registry, there is lots of research and new laws emanating from the analysis of that registry. If you look at the success of registries that are comprehensive, and collect outcomes, and have good managers analyzing them, they produced tremendous research, increased knowledge and new policies, and improved care.
But there’s only a smattering of conditions that have registries, like cystic fibrosis. In what other industry do you have so much business with no outcomes measured? Look at the Robert Wood Johnson [Foundation’s] funding goals—transparency is a leading area. There is tremendous momentum now. I’m working on a project, called Improving Wisely, at Johns Hopkins; it’s based upon the success of Choosing Wisely, which measures waste in healthcare, such as over-treatment and unnecessary surgery. The program develops measures of waste using physician experts, applies them to big data, and sends confidential notifications to doctors who are extreme outliers. Then there can be a self-correction; we’ve seen it in other areas of healthcare.
Improving Wisely is [picking up] lots of steam. I’m optimistic about the future, patients come to us asking how much does this cost—I had never seen that level of patient engagement before. With the right rapport, people are em- powered, educated, and informed. We still have old-style patients show up who just trust us, but we’re seeing a higher level of sophistication and education.
G: You’re an expert in assessing risks in operating on elders. Please tell Generations readers your latest thinking on the best approach for assessing risks, and explaining them to patients and their families?
MM: There’s a terrific series of new tools coming out for doctors and patients to explain what they’ll have done in a standardized fashion. Every patient is unique and everything needs to be tailored to them, especially when they are high risk, or frail. But this series of tools tells them this is what the surgery is, this is what to expect when—it gives them a good understanding of what to expect, and the surgery and recovery go much more smoothly.
There’s also a network of patients who have had certain procedures and are willing to talk about it to prospective patients. There’s a role for all forms, our explanations, the standardized form, and the experiences of past patients. Patients learn about options, what to expect, learn about details, the expense, or they can decide against having the surgery, which is okay, as long as they understand what they’re turning down. The more education patients have, the greater the likelihood we’re respecting patients’ wishes.
Sometimes I revert to medical vocabulary when explaining medical complications. They’ll say, ‘But what about afterwards?’ Sometimes I don’t know what they’re referring to and will talk about the risk of re-bleeding or how long their appetite may be diminished. They’ll say, ‘I meant, when can I mow the lawn?’ We need to talk about outcomes. It’s not good to use scientific terms if patients are dissatisfied or disabled from doing so.
I’ve done research on frailty as a predictor of surgical outcomes, and it has helped create a nomenclature for frailty as a condition and predictor of risk. As it was historically understood, surgical risk entailed concerns over risk of heart attack, or the risk to the lungs, or not successfully getting through recovery. But equally important is physiological reserve. Since our frailty ranking, I’ve seen a change in the lexicon about surgical patients. Coming in with a cyst or polyp, [doctors] talk about cases, well, is the patient frail? Or is the patient very interested and not frail? Or not interested but is frail? Frailty has a huge impact on decision making.
G: Can you give us an example of a way to track unnecessary or over-aggressive care, especially in elders?
MM: It’s really impossible at the patient level without an extensive review of a patient’s record and firsthand interview with patients. But using big data, we can identify extreme practice patterns that keep repeating. We can crowd-source quality and use a mathematical approach to identifying extreme practice patterns. There’s lots of waste in healthcare, up to a third of things in healthcare are wasteful—management, procedures, medications. The amount of waste is astronomical. My research has been on patient safety and the operating checklist; the next ten years are going to be focused on reducing waste.
G: In your view, what are the best resources for consumers, families, and caregivers who want to get a complete view of cost and quality before they make healthcare decisions?
MM: These sites are in development. For now, patients only have less developed sites, such as those available at Hospitalcompare.hhs.gov, or propublica.org, or consumerreports.org.
Editor’s Note: This article is taken from the Spring 2015 issue of ASA’s quarterly journal, Generations, an issue devoted to the topic “Self-Empowered Aging.” ASA members receive Generations as a membership benefit; non-members may purchase subscriptions or single copies of issues at our online store. Full digital access to current and back issues of Generations is also available to ASA members and Generations subscribers at Ingenta Connect. For details, click here.