The Administration closes the National Guideline Clearinghouse: Bad for our health!

The Department of Health and Human Services (HHS) has closed the National Guideline Clearinghouse (NGC), which was housed in its Agency for Health Research and Quality (AHRQ), by pulling its funding. If one goes to the NGC website, it actually says that there is no longer funding for it. The NGC provided a major resource for consensus information, and closing it is a tremendous loss, not only for the physicians and other medical providers who depended upon its recommendations, but for the health of the American people. It is also, sadly, a loss for the patients of physicians and other medical providers who did not heed, and even opposed the existence of these guidelines. This is because  they will now have the cover that comes from the absence of the NGC when they do things that are not supported by the best evidence available.

Wait, wouldn’t my doctor want to use the best evidence available? Can’t I depend on her/him doing this? Do I have to become a medical expert?

You – we would all – hope that our doctors would use the best evidence available. This is not necessarily the newest stuff, for the obvious reason that it is new, and thus less tested. Frequently, when a test or intervention is new, it looks good, but later, when more people have been exposed to it and more data are available, negative information may emerge. (Sometimes this is because serious side effects may appear to a new drug because so many more people are using it; sometimes it is the result of straight-up fraud, as in the case of Theranos – see The Political is Personal: Corporate power, social isolation, and the health of the nation -- Part 2, April 22, 2018.) Conversely, the oldest tests and treatments are not necessarily the best either – a doctor who does not keep up after his or her training is also going to be way behind.

And guidelines are, of course, guidelines, not laws – they are meant to guide the practitioner to help make the best decisions by summarizing and presenting the evidence, for the whole population and for significant “sub”-populations. For example, older people may have a greater benefit from – or be at greater risk of harm from – a certain treatment than younger people. This could be from a different physiology (kidneys, for example, don’t function as well at cleaning out poisons in older people) or from a different risk/benefit profile (perhaps a bad outcome usually takes longer to appear than the life expectancy of a person; a 20-year lag time for something bad has a different meaning for a 50 year old than an 80 year old).

Not all guidelines have the same strength of evidence behind them. Sometimes the evidence is very strong, coming from multiple randomized controlled trials (RCTs) that are consistent with each other; at the other extreme, they can come from the opinions of a group of experts in the field who are gathered for the purpose of creating a guideline. However, in any case, the guidelines presented should be those for which the strongest evidence exists. The website for NGC still has available the inclusion criteria for the guidelines that used to exist there. The physician is always able to do something different if the recommendation is for some (good) reason not appropriate for a particular patient. But s/he should know, or be able to find – on the NGC, say – what the guidelines are for a particular course of action (test, treatment, etc.). Until just recently, they could. Not now. Which raises the question: why is it gone?

I, of course, do not know the answer, so am forced to speculate. There is some cost to maintaining the guidelines and doing the research, and many people do not like cost, but so much more is being spent on arguably less important things (if one considers the health of the people important; I do). Some people, versions of libertarians, do not like anything that even suggests government mandates, but I know few libertarians who advocate suppressing the truth. Some people are not surprised at any actions taken by the current administration and its executive departments, particularly those that seem to take on science, as has happened with climate change and the use of fossil fuels, but those seem, ultimately, to be based on money and the opportunity for profit. Thus, destroying pristine areas for fossil fuel exploration (the Arctic, the tar sands) and transport (the Keystone pipeline), as well as of the world’s climate from burning them, makes people money. Rich and powerful people.

So maybe that is where we should look for the closure of NGC. The fact is that if there are guidelines there is a rebuttable presumption that, barring differences in the individual patient that are relevant, they should be followed. If the evidence shows that a particular diagnostic test or a treatment (drug, device, etc.) is usually better, it is going to hurt the pocketbooks of the manufacturers of alternative drugs or devices or tests. And it can also hurt the pocketbooks of actual doctors if they make their money doing something that is no more effective than, or even less effective than, doing something cheaper or easier – especially if that is done by someone else. Sometimes the issue is standardization; it saves money for a hospital (and can improve quality) if only one or two types of, say, artificial joints are used. But this hurts (obviously) the manufacturers of the other brands, and perhaps is a negative for those surgeons who have learned how to use the non-preferred brands (see Atul Gawande, “Big Med”, New Yorker, August 13, 2012). It is even a bigger issue when the evidence demonstrates that the costly surgical option doesn’t work, or doesn’t work as well as, a much cheaper non-surgical option that exists. Well, then, you are threatening someone’s income – just like renewable energy threatens the income of companies that produce and sell fossil fuels.

But would doctors actually do such a thing? Resist a cheaper and more effective alternative because it would cost them money? You betcha. Not always, of course, and not all doctors, but it has happened. “In the late 1990s,” the New York Times observes in its excellent editorial on the subject,  “when it [AHRQ] endorsed nonsurgical interventions for back pain, the back surgeon lobby waged an attack that resulted in huge funding cuts and placed a permanent target on the Agency for Healthcare Research and Quality (A.H.R.Q.), the agency that houses the database.”[1]They attacked the existence of the Agency because they didn’t like (REALLY didn’t like, since it would hit them in the pocketbook!) the evidence.

Yup. It happened. I remember it. It was shocking to me (I must have been more naïve!). I lived in San Antonio at the time, and a San Antonio congressman, Henry Bonilla, was leading the charge against AHRQ, to the embarrassment of the non-back-surgeon San Antonio medical community. But they were, and are, a rich and powerful lobby. And they are still doing thousands of surgical interventions for back pain of the type that AHRQ recommended against in the ‘90s. And making a lot of money on it. Maybe you had such a procedure? Did it help? I hope so. If you are trying to decide, for this or any other complicated treatment (surgery, cancer treatment, etc.) and wanted to know what was recommended for your problem, you could have gone to the NGC website and looked it up. Not now.

One issue with the evidence, of course, is that it depends upon what research was done, and on what populations. And diagnostic and treatment plans that make money for doctors and hospitals are only of use to them if they get paid, and paid well, so they are less likely to be done to poor and uninsured or underinsured people. Maybe this is one time when not having good insurance is a health benefit!

But it shouldn’t be. We should all be covered for necessary diagnosis and treatment. And whether providers or manufacturers can make money should not be a criterion for recommending it. And now we have less access to finding out what the recommendations are.

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[1]By the way, how did Fox News cover this story? I could only find one link, to Fox Vegas, which used the CNN coverage, which was quite critical of the elimination of NGC. National Fox didn’t seem to think it worth covering.

Maternal mortality in the US and UK: Why do we tolerate paying so much more for so much worse outcomes?

Last year, ProPublica, in association with NPR, published Why Giving Birth Is Safer in Britain Than in the U.S. In typical journalistic style, it starts by grabbing your attention with a case report of a woman in England who almost died of post-partum hemorrhage, but did not. The lesson is presumably that she did not because the physicians, midwives, and others attending her followed a rigorous set of established protocols for addressing post-partum hemorrhage that are implemented nationally in the UK.

Of course, there is a possibility that this individual woman could have died, or had to undergo more invasive surgical procedures further down the protocol’s algorithm, but the real point is that, overall, the system is working. The evidence is in that the maternal mortality rate (deaths/100,000 women delivering) is 8.9 in Britain, while in the US the rate in 2015 was 25.1, three times that of the UK! What makes this more dramatic is that the disparity has developed only since 1990; until then the maternal mortality rates in the US and UK had been declining in parallel since the 1950s.

The article cites several reasons for this difference. One, a very important one, is that the UK collects data on maternal mortality nationally and develops guidelines based upon this data which are implemented nationally. In contrast, the US collects data at best by state, or even by hospital, and

There is no federal-level scrutiny of maternal deaths, and only 26 states have an established committee (of varying methodology and rigor) to review them. Nor do all U.S. hospitals routinely examine whether a death could have been avoided. Procedures for treating complications such as preeclampsia, and for responding to emergencies such as hemorrhage, vary from one doctor, hospital and state to the next.

This is true despite the fact that the methods used by the British to collect and analyze this data were developed in the US. While there has been a well-documented 30-year effort to improve quality and to reduce preventable deaths (a category into which most maternal mortality falls) in the US, led by such organizations as the Institute for Healthcare Improvement (IHI) and embraced by such other organizations as the American Hospital Association (AHA), National Center for Quality Assurance (NCQA), the Joint Commission for the Accreditation of Healthcare Organizations (TJC), the National Academy of Medicine, and on and on, no compulsory national approach to this problem has developed. This reflects a common, and often knee-jerk, opposition to centralized approaches to almost everything, even when they have been determined to have an important effect on reducing death. It is actually parallel to efforts within hospitals to standardize care, to require, for example, all surgeries to go through a series of prescribed steps (“timeouts”) before operating, or limiting the number of different devices implanted to those needed by different types of patients rather than by the preference of the individual surgeon (for an interesting discussion, see A. Gawande, “Big Med”, New Yorker, August 13, 2012). That is, it is effective where it has been done, but it is not mandated to be done everywhere and comprehensive national data is not even collected.

Another big part of the successful UK approach to the reduction of maternal mortality has been collecting detail on what happened and why; this goes beyond “there was a death”, or “there was a death from hemorrhage”, or “there was a death from sepsis”, to identifying why it happened, particularly if the reason was something that is relatively easily addressed. Marian Knight, head of MBRRACE-UK, the group that collects the data and makes the guidelines, says

It’s all very well to know a woman died of sepsis, but to know that she died of sepsis because nobody measured her temperature, as they had no thermometers on the postnatal ward, that’s where the instruction Put a thermometer on your postnatal ward might make a difference. It’s not just the what, it’s the why.

Can you believe that there might be post-partum units where there is no thermometer? Apparently it has happened. And having a rule that it must be present is a way of preventing it from happening again.

There are at least three other important dimensions. One is that, as the report states, “These U.S. deaths are not spread equally. Women who are poor, African American or live in a rural area are more likely to die during and after pregnancy.”  This is not a big surprise.  Poor women, minority women, rural women, and uninsured women do much worse, and are much more likely to die from complications of delivery. It is the familiar song in the US, as in so many areas, of health and of every aspect of society. Is it not true in Britain? The article goes on to say

In the U.K., while inequalities persist when it comes to serious complications, according to 2012-2014 data, there is no statistically significant difference in mortality rates between women in the highest and lowest socioeconomic groups. All British women have equal access to public medical services, including free care and prescriptions from pregnancy through the postpartum period.

This also has two components; the greater equity of the quality of healthcare delivered to all segments of the population, a result of having a national health care system, and less disparity in the “social determinants of health”, the actual quality of the lives of people (women, in this case) before they access care. Especially for rural women, some of the problem the lack of an adequate number of health professionals. Over 20 years ago, family medicine residencies in Texas were surveyed and only a small percent of residents were interested in providing rural obstetric care, but no OB/Gyn residents were! This has not improved; while a recent study published by Tong, et al., in Family Medicine (Characteristics of Graduating Family Medicine Residents Who Intend to Practice Maternity Care) found that 22% of FM residents planned to deliver babies, they cite his 2012 study that showed that only 9.1% of FM residency graduates were delivering babies 1-10 years out into practice despite an intention to do so of 24%, comparable to the current study.

Another dimension is that the difference in maternal mortality reflects a greater focus on the health – and life -- of the pregnant woman in Britain, while in the US the focus is more on the health of the fetus and the newborn. This goes far beyond the issue of abortion, although the focus on children rather than women is one that is also characteristic of the anti-choice movement in the US. It is so deeply ingrained in our culture that even many health professionals (including midwives, doctors, and nurses) who see themselves as “pro-choice” and would never want to see a maternal mortality, are still more focused on the fetus and baby. It results in a practice, if not a belief, that considers the woman but a vehicle for producing a child.

Finally, there is cost, ironically but again unsurprisingly much higher in the US. Much higher. The total cost for a normal vaginal delivery in the US is about $30,000, and about $50,000 for a Caesarean section. In Britain, the cost for a normal vaginal delivery or planned Caesarean is about $2500, or less than 1/10^th the cost in the US, perhaps rising to $3400 for complicated cases (such as the one that leads off the article). Thus, the US charges far more, but has much worse outcomes for maternal mortality (as for many other conditions). This is not a side note; it is not just an interesting contradiction that our care costs more but has worse outcomes. And it is not by any means limited to pregnancy care or maternal mortality, but is present in our healthcare system at almost all levels and for most conditions. What ties these two components, cost and quality, tightly and inversely together, is that our “healthcare system” is only secondarily about delivering quality healthcare, and primarily about being a profit-making business.

So, that is the bottom line. The US has three times the maternal mortality rate of the UK despite charging ten times as much for delivery. The reasons are the absence of a national strategy to identify and remedy the causes of maternal mortality and the lack of a national healthcare system to provide the access necessary for women at risk. It causes the suffering and death to disproportionately affect those women who are already at greatest risk: the poor, minority, rural, and uninsured. The root cause is that our healthcare system is composed of poorly interconnected components, most of which are run as businesses to make money.

It is inequitable, and it is irrational from a health perspective if not from a business one. It causes unnecessary death and excessive cost, and seems to not be improving. It is not acceptable. We need to change it.

Integrated Health Systems and Cost: The Price is the thing!

When the Affordable Care Act (ACA) was being developed, much emphasis was put on the effectiveness of integrated health systems as a way to save money but still deliver quality health care. Many studies from various research centers had looked at cost to Medicare and found that places – usually smaller cities – with large integrated health systems spent less on Medicare without noticeable decrements to quality. These systems can have a single provider of both inpatient and outpatient care (such as the Mayo Clinic) or close collaborations, including shared electronic medical records (as in Grand Junction, CO). The presumption of policy makers creating ACA was that Medicare spending, which is much easier to track, would reflect overall spending. However, a recent article from the National Bureau of Economic Research by Zack Cooper, Stuart Craig, Martin Gaynor and John Van Reenen, The Price Ain’t Right? Hospital Prices and Health Spending on the Privately Insured, demonstrates that this assumption was incorrect. Reviewing overall costs in the 306 Hospital Referral Regions (HRRs, developed by the Dartmouth Atlas of Health Care) in the US, they discovered wide discordance between Medicare costs and overall healthcare costs. Indeed, many of the places that were highly-touted for lower-Medicare-costs-but-still-high-quality, notably Grand Junction, CO (which was, for example, cited as a success story by Atul Gawande in his June, 2009 New Yorker article “The Cost Conundrum”) have far higher than average costs overall. (Dr. Gawande has just had a new piece in the New Yorkerdiscussing the implications of this new article.)

The New York Times coverage of this study, by Kevin Quealy and Margot Sanger-Katz, The Experts Were Wrong About the Best Places for Better and Cheaper Health Care(December 15, 2015), includes a terrific feature that allows interactive access to the data collected by Cooper and his colleagues. You can put in a town (really, HRR) and find out where it ranks in terms of both Medicare and private costs. Grand Junction, for example, while ranking 3^rd lowest of the 306 HRRs for per-capita Medicare spending, was the 42^nd most expensive for private insurance spending. Rochester, MN, home of the Mayo Clinic, is another city lauded for its low Medicare costs (14^thlowest), but its private spending is 10^th highest! McAllen, TX, cited by Gawande in 2009 for being #1 in Medicare spending (and now still #4) is only 140^th in private insurance spending. Tucson, AZ, on the other hand, while only in the lower middle (82^nd from the bottom) in Medicare spending, is 7^th lowest for overall costs. The Kansas City region, where I live, was atypically near the middle for both, 142^nd lowest for Medicare and 82^nd  lowest for private costs. New York City is high in both, but it is 2^nd for Medicare and 34^th (quite a bit lower) for private insurance. The map in the article depicts HRRs as low, middle or high for both Medicare and private insurance.

So, what’s up? Were the experts trying to fool us? No, but the flaw  was the assumption that Medicare spending reflected overall spending. The data in this article demonstrates that it does not. It also reveals something about integrated health systems, especially those that dominate their smaller cities, given that some of the “top performers” for Medicare, like Grand Junction and Rochester, MN, were so high for private insurance. The integrated nature of these plans allows them to save money on patients by a variety of methods – they can be seen in ambulatory settings rather than in hospitals or ERs, and they share electronic medical record systems, and thus the information recorded therein, saving money by not having to repeat tests, x-rays, etc. This lower utilization is good for these health systems because Medicare is a relatively low payer, and because they can’t negotiate these rates – Medicare pays what it pays (it is a single-payer system, with minor regional variations). However, the same characteristic – being the dominant player in town – allows such integrated health systems to negotiate much higher rates with private insurers. Thus the mismatch; overall cost is a multiple of price for each service times the number of services delivered. These systems decrease the number of services for people insured by Medicare, for whom they cannot control the price (whether this does or does not decrease quality is a separate question) but they raise the price for services to people with private insurance. That places like Tucson and Kansas City have relatively lower prices for private insurance reflects the absence of a single large dominant system in those cities.

‘“Price has been ignored in public policy,” said Dr. Robert Berenson, a fellow at the Urban Institute, who was unconnected with the research’, in the Times article. Other health policy experts, such as Princeton’s Uwe Reinhardt, have been warning about this for decades. In the effort to pass the ACA, and please both providers and insurers, this point was in fact ignored, and it is the source of most of the common legitimate criticism of the ACA – that in many places decent health insurance policies bought through the health exchanges are unaffordable. With higher prices in these regions, insurers pass on the cost to their customers.  This is illustrated in the NPR story “Obamacare Deadline Extended As Demand For Health Insurance Rises” on December 18, 2015, which documents both the success of ACA measured by the large increase in the number of people signing up for coverage and their frustration at the frequently-high cost of this coverage. Of course, this is completely unrelated to the criticisms leveled at ACA by the Republican candidates for President and their allies in Congress, whose “solution” – abolish ACA – is Marie Antoinette-like. While the French queen is reputed to have said, in response to being told that the peasants had no bread, “then let them eat cake!”, Republicans, hearing that many people cannot afford health insurance on the exchanges even with subsidies, or get Medicaid in states (that they control) which have not expanded it, respond “let them pay out of their own pocket!”

The issues and solutions are clearly laid out by the reliably insightful Dr. Don McCanne is his “Quote of the Day” on this topic. A solution cannot come from a jerry-rigged program that allows either insurers or health systems or both to maximize their profit. It needs to come from a system that starts with price controls, most effectively by a single-payer system such as Medicare. There are, as he notes, still risks – mainly that health systems may under-utilize services when they cannot make profit, leading to lower quality of care. But we can guard against this both on the regulatory end, by measuring quality outcomes and holding providers responsible, and through the market because the incentive to not provide services to Medicare patients because they can be more profitably provided to the privately -insured (the “opportunity cost”) goes away.

The infatuation of both policy makers and providers for integrated health systems is not entirely misplaced. The potential savings from shared data and not repeating tests, and more importantly for caring for people in the most clinically appropriate setting (inpatient, ER, outpatient surgery center, primary care, long-term care) is a real positive feature of these systems. But to the extent that these providers are allowed to use their market muscle to raise prices to insurers which are passed on to beneficiaries, it becomes a real negative.

The key feature of a good health system is that it is not focused on balancing the financial interests of big insurers and big providers, but that it puts the benefits to patients, to the people’s health, first.