Health Datapalooza 2017: Data Transparency Matters

Posted April 28, 2017
By Julia Zehel

It’s the halfway mark of the first day of Health Datapalooza 2017 in Washington, DC. This morning was full of intelligent discussions about how to best utilize the emerging goldmine of data in healthcare. There were also plenty of speakers, from the United States Secretary of Health and Human Services Tom Price, who gave the opening keynote speech, to Casey Quinlan, an incredibly passionate patient advocate who has a QR code of her health records tattooed on her chest.

Data Matters

One of the biggest themes of the event thus far that I find myself most fascinated by is the concept of complete and truthful healthcare data transparency. As someone who’s been working in healthcare, this concept isn’t new to me, as exposing data to patients is one of the biggest problems that we inherently addressed through solving interoperability. But what is new to me are the shocking examples of what data transparency—or lack thereof—can mean in real life.

I know “shocking” is often a sensational or misapplied word, but in this case, I really was surprised by the intense and impactful talk given by Elizabeth Cohen, CNN’s Senior Medical Correspondent. The third speaker of the day, her speech opened as many others do, with a warm thank you to the event organizers for having her, general statements about the state of healthcare, and other remarks about the emerging need to advocate for more widespread data transparency.

Though pleasant enough, she then shifted toward talking about how her initial investigations into data transparency led her to interview a mother who’s infant son had died from surgical complications to fix a heart abnormality. Before the surgery, the mother had been told by the surgeon that the operation would go well and that though rare, he could easily handle her son’s abnormality. What’s more, he assured her that in all his time as a surgeon, only two of his patients had ever died following this operation.

But that was a lie—after digging into this surgeon’s history, Cohen found out and later revealed to the mother that five babies had died after experiencing surgical complications with this doctor. The mother was justifiably angry that she had put her trust in someone whose surgical mortality rates were well above average, but beyond her anger, the mother was at a loss as to how she could prevent something like this from happening again in the future. The mother left Cohen with a question that spurred her to begin looking into other cases where hidden data led to negligent care delivery:

how do I know if I can trust someone with the life of the one I love most?

This seems like an impossibly daunting question, but the answer appears to be, quite simply, data. Knowing who to trust and why should depend upon exposed data from the health system about the success rates of all procedures, and that makes a lot of sense—if a surgeon can perform a surgery with a success rate of 99%, you can (and should) trust that surgeon over another who’s success rate is 70%. Seems straightforward enough.

But the staggering thing is that there are no regulations that require a hospital to disclose this very necessary and useful information (although many often do of their own volition). This means that if a hospital has abysmal mortality rates, they can willfully leave patients completely in the dark about how well their staff performs life-or-death procedures.

Think about that for a second. That’s scary.

The thing is, the mother of the baby who died hadn’t known the surgeon had a history of botching infant cardiac surgeries because, like so many of us, she assumed she could trust a surgeon. This really struck a chord with me—questioning the inherent trust we place in medical professionals who, at the end of the day, are just humans who can (and do) make mistakes. How do we begin to think to evaluate our caregivers? How do we re-train ourselves to be consumers of healthcare instead of just recipients?

Demanding Meaningful Data

This question is, I think, at the very root of healthcare’s transition to value-based care. Questioning our care providers—not even critically, but objectively—is how we, as a market of consumers, can begin to be advocates for our health and receive the best care. Though Cohen’s example is on the extreme end, it does a fantastic job of illustrating that numbers do tell a story and there’s valuable information to be gleaned by examining healthcare data.

But how do we even begin to make this massive mental shift in the way we approach care to become consumers? For almost the entirety of medicine’s history, we’ve been recipients of care, and overhauling our patient mindset is a massive task.

Cohen later gave a few ways in which we can begin to do this, but she continued her story by presenting a video on her investigation into Kentucky Children’s Hospital, where four children died following complications from heart surgeries within two months. The hospital had no public-facing information about their mortality rates and refused to disclose them, even after repeated attempts from parents and Cohen to obtain them, both on camera and off. I implore you to watch the video in the link because the answer from Dr. Michael Karpf, Executive Vice President of the University of Kentucky’s health system, about why he won’t release the mortality data is—and again, not for lack of a better term—shocking.

The result of this intense public scrutiny was Kentucky Children’s Hospital shutting down cardiac surgery for four years. To be clear, they still refused to release any data on their surgical mortality rates, but having to halt surgery for four entire years to get their staff up to par speaks volumes about the story their data could have told.

What We Can Do

There’s incredibly important, real-life ways in which data transparency can influence outcomes. That’s something I hadn’t fully grasped prior to Health Datapalooza, and I think more generally, losing sight or perspective when it comes to engaging with these big concepts in healthcare is something with which I struggle. “Healthcare data transparency” is lofty enough to be a bit abstract unless you reach for it and pull it down to a more personal level, and that’s exactly what Elizabeth Cohen did for me.

Not to be the kind of speaker who talks about an ideal end state without providing actionable ways to achieve it, Cohen suggested three steps we can take to begin improving data transparency in healthcare:

  1. Demand the release healthcare data that reflects quality.
    • It has to be meaningful—numbers can’t be padded nor irrelevant. They must accurately portray a physician’s performance or are worthless.
    • Volume reporting is critical in reflecting quality. We as consumers must know success rates relevant to failure rates relevant to the number of procedures performed.
    • Complication rates are not the same thing as mortality rates and must, therefore, be listed separately. This comes into play if, for example, someone who needs a colonoscopy from a certain physician can only find surgical mortality rates. That data isn’t going to help him—he needs to see colonoscopy complication rates.
  2. We must hold hospital staff accountable to the question of whether or not they’d come to their health system to receive care. You wouldn’t get on a plane that the pilot and crew thought was unsafe; you shouldn’t receive care from a health system whose employees wouldn’t trust it to take care of themselves.
  3. There must be full disclosure and open review of failures.
    • We must find ways to make health systems accountable, and we have to make the right people aware that something went wrong. Failures must be documented, or else they will get lost in the endless shuffle of health system bureaucracy and paperwork.

These seem like the right first steps to take in holding our care providers to a higher, more transparent standard of care, and to clarify, the audience she was addressing were people from companies that are focused on leveraging healthcare data. If they hadn’t already, I hope they took her message to heart.

Becoming Better Consumers

I know I’ve always inherently trusted the surgeons and doctors I’ve dealt with throughout my life, but as an adult who’s becoming more health conscious, it makes sense to want to know more about who I’m entrusting with my health and how reliable they’ve proven themselves to be. I can only imagine how much being a parent amplifies this sentiment, and as the case at Kentucky Children’s shows, data can make the difference between watching your child grow up or losing them to an underperforming surgeon.

It’s time for data to help us make better-informed decisions, but it’s up to us to be more conscious consumers of healthcare and demand it.

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