From Data Silos to Black Holes...the Story of America's Healthcare System?

Kim BellardIf you are anything like me, you were transfixed by last week's first-ever photographs of an actual black hole. If you somehow missed the coverage, I urge you to take time to read about it, such as here or here. And if this accomplishment holds no interest for you, then you're probably not going to be interested in this article either, although it is about healthcare's metaphorical black holes rather than honest-to-goodness black holes.Black holes were an unintended consequence of Einstein's General Theory of Relativity. He published it in 1916, and soon after that one sharp reader -- Karl Schwarzschild -- found that its equations called for areas of space in which gravity was so strong that not even light could escape. Most experts (including Einstein) scoffed, treated them as mere mathematical curiosities. It wasn't until the 1960's that people started taking them seriously (or that they acquired that catchy name).

They've been featured in numerous science fiction movies/television shows, along with some very plausible simulated images. The breakthrough last week was an actual image (shown below). It took collaboration between over 200 scientists working at eight radio observatories on six mountains on four continents, along with two years of data analysis.

The black hole is 55 million light years away; in case you don't know, a light year is, well, very, very far away. Some have complained that the picture is blurry, but it has been analogized to reading a text in New York from Paris, or counting the dimples on a golf ball in Los Angeles from New York. As one of the lead scientists told The New York Times, "It's astonishing to think humans can turn the Earth into a telescope and see a black hole."

Image of a Black Hole - Credit - Event Horizon Telescope Collaboration, via National Science FoundationAstonishing indeed. Meanwhile, one of my Twitter buddies Megan Janus (@Megan_Janus) praised this monumental effort in collaboration and challenged: "Imagine what we could do for healthcare with true interoperability!"

That got me thinking about "black holes" in healthcare. Here's a short list:

Data silos: Until fairly recently, most of our healthcare data was locked away in paper records, only laboriously compiled into more aggregate collections that could be analyzed. Now we have no shortage of digital health data and bravely talk about the power of Big Data, but true interoperability remains a goal.

If you happen to receive care within a health system, or sometimes between health systems that use the same EHR platform, the odds of your data following you are much higher now than ever, but otherwise, probably not. It is widely agreed this is a problem, many are working on it, we know ways we could address it, but if your life depended on it -- and it might -- don't count on it anytime soon.

Data goes in, but, all-too-often, it doesn't come out.

Healthcare silos - Credit - Flying BlindData: There are some kinds of health data -- like weight or blood pressure -- that have been tracked since the advent of modern medicine. We've been adding to the list as we've developed new things to measure and new ways to measure them. Now we're in the early stages of a torrent of new data, especially from smart devices, including fitness trackers and medical implants.

This seems like a good thing, but not necessarily. We don't really know which data is important, when, for whom. We don't know who should be looking at all this data, how or when. In many cases, even if the data helps us recognize there is an issue, we don't necessarily know what to do about it. Even worse, not only do you not control yours, you don't even know what is being done with it.

The data might as well be in a black hole.

Decisions: As we creep closer to using A.I. for diagnosis/treatment decisions, many worry that the A.I. might use "black box" logic that will preclude us from understanding why it makes those decisions. But, as others point out, we already have that problem; it's just that the black box reasoning takes place within physicians' heads.

Medical decisions vary due to dizzying array of circumstances -- such as where physicians went to medical school, where they did their residency, whom they practice with, how and by whom they are paid, what research they happen to have read/remember, how many similar cases they've seen or done. They might offer an explanation for their decision, but it's anyone's guess whether that explanation is the truth or a rationalization of other influences, which they may or may not be aware of.

The decision process may be like a black box than a black hole, but, either way, we don't know what happens inside.

Medical care: The scary thing about black holes is that their gravity inexorably drags in everything within its reach. Unless you are very far away or have sufficient escape velocity, you will get pulled in, and, once you are sucked in, you are never getting out. We call it our "healthcare" system, but usually what we mean is medical care. It treats illnesses, it puts us under the care of medical professionals, it turns us into patients. A doctor's visit begats prescriptions, and perhaps some testing. Testing leads to procedures. Procedures lead to hospital stays. Hospital stays lead to....you get the idea.

What we might once have thought of as "health" -- or never thought about at all -- becomes "health care," a.k.a. medical care. And once you transform from a person, whose health belongs to you, to a patient, your health is never quite your own again. You've been sucked into the medical care black hole.

And, chances are, you're never getting out.-------There's not much we can do about real black holes. They may (or may not) preserve information, they may (or may not) create wormholes, and they may (or may not) eventually evaporate. But the above examples of healthcare's black holes are ones that we've created, and they're ones we can do something about. We can escape them, we can get the information in them out, and we can reverse their effects.

If some humans can figure out how to take a picture of a real black hole, certainly other humans can fix healthcare's black holes.