You recall when the “Bitter Pill” story came out? That was in February 2013, just over a year ago. At the time I wrote about “lighting the dark corners of health information” saying that some transparency, any transparency, is a really good place to start. Since then, we’ve seen a lot written about costs in healthcare, and transparency has become a major theme across the industry.
Shortly after Bitter Pill’s publication, in May 2013, CMS released their charge master data file, telling rates charged for common procedures. While there’s some argument as to how valuable the data is/was, it’s given many in healthcare a taste of what transparency has the potential to achieve, and we’re still in the beginning stages.
Earlier this month CMS provider utilization and payment data was released. Among the normal cries of “it’s meaningless!” and “It’s out of context!” stories have continued to unfold over the specifics of what payments have been made and to whom.
This week the New York Times highlighted a story about a physical therapist in Brooklyn who was paid $4 million to an address he no longer occupies. The NY Times also reported that “Physical therapy has become a Medicare gold mine. Medicare paid physical therapists working in offices $1.8 billion in 2012 alone, the 10th-highest field among 74 specialties, according to the Times analysis. In Brooklyn, physical therapy was second only to internal medicine. Why Brooklyn? Federal authorities say the borough is a national hot spot for Medicare fraud, particularly fraud involving physical therapy.”
We may not know the whole story, we don’t have quality metrics to add to them, and we shouldn’t jump to conclusions, but having some of the data allows us to begin asking questions. “Dumping” the data is a fine place to start. The context will come. Data can lead us in a lot of directions, some dead ends, but it’s better late than never starting on the journey.
When Brill’s Bitter Pill was released, I recall people saying that it would be a flash in the dark and would be forgotten in short order. For a normal story, they might be right, but with data, it’s different. This is a story that continues to evolve because little pieces keep getting added.
Now, if you mention “the bitter pill” to just about anyone in health care, they know you’re talking about transparency. The topic has caught fire. Transparency was mentioned by several of the keynotes at HIMSS this year and has become almost as big of a topic as patient engagement.
Why? Data is a view into an unseen world. As we move to value-driven care, we’ll need to bring cost and quality transparency together. So providing even the beginnings of cost and quality components is a big step forward. It allows us to ask what else would be useful.
There’s a lot of transparency hype, as Dan Munro points out in Forbes. We will need to assess quality. Price alone won’t get us to the value in value-based care. Still, one of the misconceptions with data journalism is that if the story isn’t immediately clear when the data is released, then the release of data is somehow not all that valuable. Quite the opposite is true—the release of data and what initially is revealed is just the beginning of the story. The story can continue for years.
Data is like an archaeological dig. It takes time to sift through the dirt and sand to find the artifacts that tell the story. As “internet geologist“, Susannah Fox so eloquently states, “The past is made visible as archaeologists gently probe and sift… The present is made visible, in data.”
Mostly we’re blind to what happens in health care, but data can make it visible.
After a while, with enough people digging, some fundamental questions begin to surface, like why do specialty drugs cost so much? And why do we pay so much for procedures when other parts of medicine are just as valuable? Why do we complain about an $84,000 Hepatitis C Drug when a liver transplant and treatments are so much more expensive?
We then dig a little more and, perhaps, policy begins to change or more data is released. The picture continues to come into better focus. If we hold out until a dataset is perfect and answers every questions that could be asked, we’re unlikely to make any progress.
Opening data to the people has an incredible democratizing effect. It’s a source that costs very little to release, but if it’s held tight, it can give certain players and institutions an unfair advantage. Better to release imperfect data and have the beginnings of a story than wait until it is perfect and let industry tell the tales in the meantime.
Pompeii was “discovered” in the mid-18th century, and some 250 years later archaeologists are still asking questions about what life was like. The great thing about data is that we can invite everyone to be part of the dig team.
A data dump usually comes without context, which can be provided over time. Once the crowd can look at the data, we can see how to make it better and add the appropriate context.