Sunday, July 22, 2018
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.” 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.