Data Liberation Day! No, it’s not an official designation. And don’t fret if no one invited you to a Data Liberation Day cookout. But October 6, 2022, was indeed an important day in healthcare—it marked the lifting of most information-blocking rules, as designated in the 21st Century Cures Act. In other words, healthcare organizations are now legally required to give patients full access to their health records. Up until the rule went into effect, health systems and associated entities could decide how much information patients could get.
What patients are able to do with that data is another matter. The increased transparency should, in theory, give patients a better means to assess the care they’re receiving, understand how much it costs, and determine whether they can get a better deal from a different provider or entity—the same way we shop around for the best price on a car, TV, or any number of products.
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The reality is different. No one who’s experiencing a medical emergency is going to google nearby hospitals and compare prices for specific procedures. Further, the emergency department is a key access point for a large segment of the populations, and often misused out of necessity—driven by lack of insurance or affordable access to primary care. Many of these facilities offer widely variable charges to financially vulnerable populations, putting another burden on a group already facing significant challenges.
Put simply, few patients will have immediate use for the mounds of data they now have access to. But that doesn’t mean the increased transparency won’t make a positive difference.
On this episode we’re joined by Morgane Mouslim, PhD, and Morgan Henderson, PhD, of The Hilltop at the University of Maryland, Baltimore County. They explain why health data transparency might not change patients’ habits in the short term but could force hospitals to deliver care more equitably in the long term. Below are a few excerpts.
Patients are beholden to hospital pricing.
Morgan Henderson: “I like to [use] metaphors to capture what’s going on with hospital pricing. And the best one that Dr. Mouslim and I could come up with is that going to the hospital is like going into a restaurant—but everyone has a menu with different prices on it. [The prices on] my menu might be [set by] my insurer, and the person next to me would have a menu with different prices set by their insurer. And not only do you have different menus with different prices—the waiter orders for you. So you have basically no leeway over what services you’re actually ordering.”
The likelihood of patients using the data available to them.
Morgan Henderson: “In principle, you could; in reality, you don’t. Patients do what the doctor orders. The very, very intelligent, educated, ambitious, and cost-sensitive patients might say, ‘OK, you told me to get an MRI, but I’m going to check out that imaging facility down the street to see if I can get a better price there.’ But I think that would be very much the exception rather than rule.”
Morgane Mouslim: “When you’re having an emergency, shopping around is the last thing on your mind. And in the United States, facility fees are coded from level one to level five, and you have no say in what level you’re going to be. Level one is the cheapest, level five is the most expensive. The hospital will decide what level to code you at. Of course, [when] you come in with an emergency, you don’t know any of that; you have no leverage; you have no control over how much you’re going to be charged there.”
If patients can’t use the data, who will?
Morgane Mouslim: “The data is very hard to use—you need specific coding skills and a lot of medical knowledge to [be able to] shop around. There are some tools that are starting to make it a little bit easier, but it’s still very hard from the patient side. I think the main advantage of all this data is that now policymakers and researchers can really start to leverage it to understand what is going on. What dictates hospital pricing? Are nonprofit hospitals actually providing community benefit, like they say they do? These are just a couple of questions that we can now answer. And then based on these results, policymakers at the state and federal level can enact policies that can regulate prices, change the ways hospitals are managed, etc. And I really think that’s where the change is going to come, because expecting patients to take the data and make something of it is very, very challenging.”
Morgan Henderson: “I hope that one key stakeholder in the American health services ecosystem will make something useful of this data, and that is employers. A large fraction of Americans receive health coverage through their employers. A big insurer might be doing all the paperwork, but the employer is actually paying the bill. So employers have a tremendous incentive to want to lower healthcare prices. And with this data, hopefully, employers might start having the tools to drive better deals with health providers and hospitals, and bring down some of these very, very high costs. Because as patients, we’re basically powerless; employers are not.”
About the Show
The US spends more on healthcare per capita than any other country on the planet. So why don’t we have superior outcomes? Why haven’t the principles of capitalism prevailed? And why do American consumers have so much trouble accessing and paying for healthcare? Dive into these and other issues on Healthcare Upside/Down with ECG principal Dr. Nick van Terheyden and guest panelists as they discuss the upsides and downsides of healthcare in the US, and how to make the system work for everyone.
This article was originally published on the ECG Management Consulting blog and is republished here with permission.