Stop the Scam on Health Care Consumers and Open Up the Data

Andy OramRemember the health insurance uproar in the 1980s and 1990s? We're about to get it again. Thirty years ago, the public had torches and pitchforks out because insurers were overriding their doctors with decisions made hundreds of miles away by bureaucrats. Currently, the controversy is over high deductibles and low caps on payments. Insurers and employers say the shift of health care payments to the patient will lead to a more discriminating use of the health care system--but patients know a scam when they see one.

Clearly, we have to get health care costs under control. After a few years of cost relief (possibly caused by the recession, although I believe health care reforms helped), costs are spiking again. Consolidation makes things worse, and the promised cost savings of Accountable Care Organizations aren't showing up for most of them yet. So let's look at what consumers can't do, and what institutions need to do to fix our health care system.

Repaving the road to hell

We did not get to managed care hell in the 1980s blindly. The insurers knew damn well what was going on--they knew that providers were overdiagnosing, overprescribing, and overtreating. Providers did this mostly because it was easy to do and they had no internal counterbalances to stop the practices. Patients loved the attention and the illusion of care, and everybody thought more was better. The insurers tried to be smart. They hired their own doctors and read up on the literature. But nobody can know a patient's needs from a thousand miles away, and micromanaging cases didn't work.

So now we believe in patient engagement and all the hot air that comes along with that. It becomes a scam when insurers, providers, employers, and governments glom onto it to address the same old unremitting problem of skyrocketing health care costs, now one-fifth of the US economy. So everyone wants patients to look at prices before they go under the knife. Spot-checking suggests that transparency can lower prices. But wait, we've jumped over some premises on the way to a conclusion. When doctors and insurers are responsible for high prices, why does it become the individual patient's responsibility to lower them?

Evading responsibility

Clearly, the reason that the burden of twenty percent of the economy gets thrown on backs of each individual patient is that insurers, providers, employers, and governments won't do what they need to fix the problem.

• Insurers won't clearly post how much they'll pay. They could also find out who is a competent provider, if they tried, but they won't do that.
• Providers won't be transparent about costs, especially when it comes to the full costs of end-to-end treatment.
• Governments won't track quality and force transparency.
• Employers won't take on these tasks when they're large enough to do so, and won't challenge the other large institutions to do their jobs.

These are big accusations, and I have been collecting news items to back up how broken the system remains:

• Most states still get a grade of F for price transparency. Some have recently passed laws that may eventually lead to price postings, and some third-party services such as Clear Health Costs fill in some of the gap, but you still can't plan an MRI like purchasing a shirt. Insurers aren't doing the job either.
• Researching the quality of your doctors is a joke. Often you can't even tell which doctors are in the health plan you choose from an exchange. Furthermore, trivial data entry errors pollute CMS's database on provider quality.
• Quality measures aren't working. Center for Medicare & Medicaid Services is trying to streamline the reporting of quality measures, but it still requires manual entry, which taxes the time and memory of physicians and leads to errors in the data. Measures are also too subjective.

And I haven't even tried to touch on patient portals, which are a horror story all their own. Whether you look at a review of the literature, a journalistic investigation, or an informed personal report, you see miserable availability and usability.

You might have noticed that, by now, I've stopped using the catchy word "consumers" that all the scammers prefer. We are not consumers, because we can't judge and weigh and choose our health care in any rational manner.

Some more reasons that we as patients can't fix the system include:

• Official charges are notoriously out of line with what insurers and ultimately consumers pay, as famously documented in Steven Brill's 2013 Time Magazine article.
• Hospitals charge separately for the services that go into a single episode of treatment.
• Treatments are reported as inscrutable codes or unreadable jargon.

So the patients are the one party in the health care system who can't do much to lower costs--and they're the ones being punished for high costs. But even if insurers, providers, employers, and governments wanted to tackle costs, they'd have a very difficult time. The cost problem is daunting for any institution or group of institutions.

This is why health care costs are a problem all around the world, even in countries that we thought knew how to handle health care, such as France, Germany, Japan, and (this one especially for my leftist friends out there) Cuba.

Some causes are external, such as rising elderly populations, the growing popularity of unhealthy lifestyles, the excessive consumption of junk food, and the discovery of miracle treatments that lengthen life at tremendous cost--but in any case, a health care system has to adapt.

There are two main reasons we can't figure out what a treatment costs: patients are unique, and quality of treatment varies.

We've already seen how hard it is to collect quality data and make sense of it. Even clinical researchers don't really focus on quality. Studies of health care interventions (such as the adoption of electronic records, for instance) assume that quality means adherence to research recommendations for treatment. But did the patient actually get better? That's too hard to find out.

Research recommendations are questionable: most are based on limited studies and are often reversed by later clinical research of by longitudinal studies that look at more representative populations and time frames.

Determining the quality of treatment would require weighing dozens of factors about the condition of the patient and how the operation was conducted. Many reformers would like doctors to adopt a rigorous evaluation system like the flight operational quality assurance program used by airlines. This would probably be very beneficial for quality, but would not be useful for rating individual doctors or facilities.

Add to these hurdles the almost inevitable risks of complex, intrusive programs: they can raise costs by adding bureaucracy, drive talented practitioners from the field, and get in the way of innovation.

But technology may help. Here are some things that the health care field could do for more transparency in price and quality:

• Adopt standards for recording clinical information--not rigid and impoverished codings like ICD, but databases that can reflect each patient's condition and draw relationships between them, like the Semantic Web. Analytic tools could then determine such things as how much a patient's knee pain is related to obesity.
• Track outcomes better. Follow patients for long periods of time after each procedure and record changes in rigorous, standard formats, taking as much data as possible from objective measurement devices rather than patient reports. Patient reports are also important, but we need hard data to evaluate physicians.
• Provide open-source data analysis tools to each health care provider, who can run them over the full patient information, including identifying information. Sharing patient data is usually risky and requires de-identification that weakens the data's value. If providers can run the tools, only the results need to leave the facility. We lose some of the serendipitous joyw of running tools on huge data sets, but gain richer data at each site.

It will be hard to reach deep into patient encounters and extract the information we need to bend the health cost curve. But we must start by identifying where the problem is--and it's not with you and me as patients. Let's apply tools where they can make a difference.