Get a group of health policy experts together and you’ll find one area of near universal agreement: we need more transparency in healthcare. The notion behind transparency is straightforward; greater availability of data on provider performance helps consumers make better choices and motivates providers to improve. And there is some evidence to suggest it works. In New York State, after cardiac surgery reporting went into effect, some of the worst performing surgeons stopped practicing or moved out of state and overall outcomes improved. But when it comes to hospital care, the impact of transparency has been less clear-cut.
In 2005, Hospital Compare, the national website run by the Centers for Medicare and Medicaid Services (CMS), started publicly reporting hospital performance on process measures – many of which were evidence based (e.g. using aspirin for acute MI patients). By 2008, evidence showed that public reporting had dramatically increased adherence to those process measures, but its impact on patient outcomes was unknown. A few years ago, Andrew Ryan published an excellent paper in Health Affairs examining just that, and found that more than 3 years after Hospital Compare went into effect, there had been no meaningful impact on patient outcomes. Here’s one figure from that paper:
The paper was widely covered in the press — many saw it as a failure of public reporting. Others wondered if it was a failure of Hospital Compare, where the data were difficult to analyze. Some critics shot back that Ryan had only examined the time period when public reporting of process measures was in effect and it would take public reporting of outcomes (i.e. mortality) to actually move the needle on lowering mortality rates. And, in 2009, CMS started doing just that – publicly reporting mortality rates for nearly every hospital in the country. Would it work? Would it actually lead to better outcomes? We didn’t know – and decided to find out.
Several years ago both Microsoft and Google invested millions of dollars on a flawed assumption: If they built a useful and free healthcare application, people would flock to it. In both cases, the effort failed. At its peak Microsoft HealthVault was only able to enroll a few thousand—largely inactive—users. Google Health was discontinued after a few years.
The problem was (and is) that unlike almost any other business, healthcare is a negative good.
Even if it’s “free,” as was the case with both the Microsoft and Google offerings, most people find tracking their health to be, in some sense, an admission of frailty, imperfection and mortality. Except for occasional blips related more to vanity (weight loss is the prime example), when it comes to our health most of us are in denial. So when people talk about technology for patient engagement, I tend to pause and wonder: Should we be building apps and services just for patients, or for the people who care about them too?
I am an IT geek physician. I have my an EHR which I created and control.
Today, I wanted to understand my diabetic practice a little more, so I dumped all my HbA1c data out of my EHR and into a spreadsheet where I was able to manipulate the data and learn a few things about my practice.
I learned that:
If my patient had a HbA1c ≥ 8, the likelihood that the HbA1c would be < 8 at the next visit is 68%.
If my patient had a HbA1c ≥ 8, the likelihood the HbA1c would be even higher at the subsequent visit is 29%.
If my patient had a HbA1c ≥ 8, the average change in the HbA1c at the next visit was -0.7.
If my patient had a HbA1c < 8, the likelihood that HbA1c at the subsequent visit would exceed 8% would be 15%.
We are data druggies.
We spend our days like desperate junkies crawling the carpet, sifting through the shaggy strands of patient histories with shaky fingers in search of facts. Every word our patients utter we feed to the never-ending demands of the electronic chart.
We find a fact and we enter it. The database grows. Someone somewhere adds another question we are supposed to ask our patients. We get back on our hands and knees. We start sifting once again.
Have you been to the continent of Africa in the last twenty-one days? Click. Do you or a loved one feel threatened at home? Click. How was your experience today? Click.
In the background the blood pressure cuff inflates, the quiet hiss filling the room. The monitor beeps along with the patient’s pulse, each ding another penny tossed into the ever-growing bank of patient data.Continue reading…
Health Datapalooza once again lived up to its reputation as the liveliest and most eclectic health IT confabs of the year. Energetic and sleek young entrepreneurs mingled with government bureaucrats, academic types, consultants, current and former ONCers, a smattering of providers, app developers, data geeks, and patient advocates at this year’s conference, held in Washington D.C. June 1 to 3 with about 2,000 in attendance.
Although the speeches, app demonstrations, and panel sessions broke little new ground, that’s not the point. The point is to maintain the excitement, optimism and commitment, to update the vision, showcase the creativity, and extol the virtues and power of data-driven care improvement. Perhaps not as the solution to all the health system’s woes, but a fair share of them.
I didn’t discern a dominant theme, but amid the ra-ra and fun there was a good amount of hand-wringing around these issues:
1. Failure to engage the vast majority of consumers/patients in their own care—with data, medical records and Yelp reviews in hand. Some two-thirds of providers attesting to stage 2 meaningful use reported that not a single patient had requested their data or records. Continue reading…
Much has been made of Mark Cuban’s medical knowledge since he tweeted, “If you can afford to have your blood tested for everything available, do it quarterly so you have a baseline of your own personal health”. Charles Ornstein shared the tweet and many physicians and others, myself included, weighed in on the costs and potential for harm from unnecessary testing.
I’ll admit that, when I tweeted to him, I expected Cuban to agree. But he didn’t. In fact, he grew increasingly resistant. I stopped responding when he announced that the opposition to his idea his had convinced him he needed to take his proselytizing to his TV show.
Instead of poking the sore, I began to wonder about the origins of Cuban’s conviction. I remembered that he is not alone in wanting tests that clinicians who worry about value, cost, and harm think he shouldn’t have.
But where do these attitudes come from? Is it possible that clinicians are contributing in any way to this situation? Quite the contrary: most Americans want tests, even when you tell them that nothing can be done with the information. Furthermore, Americans are more convinced of the benefits of tests like mammograms than people in other countries, and then go out and get more of them.
I think that we are. My team has studied why patients get so many electively placed coronary stents, when cardiologists readily admit that randomized trials have demonstrated that there are few situations in which such stents improve survival or reduce the risk of heart attacks.
Studies of the beliefs of patients who have just received an electively placed stent give a big clue: 80% thought stenting would reduce their risk of death, even though their cardiologists knew that this was not the case.
Two years ago, I interrupted a speaker at a big health/tech conference, right in the middle of his presentation. I still blush at the memory. But the speaker was citing data — my data—incorrectly and I couldn’t let it pass.
Brian Dolan recently wrote about how he wished he’d spoken up when he heard someone spreading misinformation at a conference:
Unfortunately, about 80 people sitting in the room either accepted this as new information or failed to stand up to correct the speaker. I wish I had pulled a Susannah Fox and done the latter.
He linked to my 2012 post about what happened at Stanford Medicine X.
In that post I asked:
- What style of conference is the right one for the health/tech field? The TED-style “sage on stage” who does not take questions? Or the scientific-meeting style of engaged debate? Or is there a place for both?
- Do different rules apply to start-ups? Is it OK to fudge a little bit to make a good point, as one might do in a pitch? Personally, I do not think people are entitled to their own facts. There’s too much at stake.
We can’t let misinformation—or worse—go by without comment.
I think it’s time for more people to speak up in health care.
More pediatricians should express their measles outrage.
More people should chronicle the reality of living with chronic conditions.
More people wearing medical devices should demand access to the data being collected.
More people should speak up about medical errors before—and after—they happen.
Today is the kick-off of the vendor-fest that is HIMSS. Late last week on THCB, ONC director Karen De Salvo and Policy lead Jodi Daniel slammed the EMR vendors for putting up barriers to interoperability. Last year I had my own experience with that topic and I thought it would be timely to write it up. (I’ll also be in the Surescripts booth talking about it at 3.45 Monday)
I want to put this essay in the context of my day job as co-chairman of Health 2.0, where I look at and showcase new technologies in health. We have a three part definition for what we call Health 2.0. First, they must be adaptable technologies in health care, where one technology plugs into another easily using accessible APIs without a lot of rework and data moves between them. Second, we think a lot about the user experience, and over eight years we’ve been seeing tools with better and better user experiences–especially on the phone, iPad, and other screens. Finally, we think about using data to drive decisions and using data from all those devices to change and help us make decisions.
This is the Cal Pacific Medical Center up in San Francisco. The purple arrow on the left points to the door of the emergency entrance.
Cal Pacific is at the end of that big red arrow on the next photo. On that map there’s also a blue line which is my effort to add some social commentary. To the top left of that blue line in San Francisco is where the rich people live, and on the bottom right is where the poor people live. Cal Pacific is right in the middle of the rich side of town, and it’s where San Francisco’s yuppies go to have their babies.
Last year, on August 26, 2014 at about 1 am to be precise, I drove into this entrance rather fast. My wife was next to me and within an hour, we were upstairs and out came Aero. He’s named Aero because his big sister was reading a book about Frankie the Frog who wanted to fly and he was very aerodynamic. So when said, “What should we call your little brother?” She said, “I want to call him Aerodynamic.” We said, “OK, if he comes out fast we’ll call him the aerodynamic flying baby.” So he’s called Aero for short.
Thus began the Quest for Intra-Aero-Bili-ty –a title I hope will grow on you. The Bili part will become obvious in a paragraph or two.
Something had changed since we had been at Cal Pacific three years earlier for the birth of Coco, our first child.
If you look carefully at the top of Amanda’s head, there’s now a computer system. Like most big provider systems, Sutter–Cal Pacific’s parent company–has installed Epic and it’s in every room or on a COW (cart on wheels). Essentially we have spent the last few years putting EMRs in all hospitals. This is the result of the $24+ billion the US taxpayer (well, the Chinese taxpayer to be more accurate) has spent since the 2010 rollout of the HITECH act.Continue reading…
What if I asked you to talk data—about lots and lots of health data? By that I mean data about you and your community that you and others could use to improve your health.
What if I asked you to sit for hours with others from your community to talk about using the giga-bytes of data from your devices and other sources like electronic health records to help improve health—your health and the health of your community?
Would you play? Would you do that?
Or would you blanch, shake your head incredulous, yawn with boredom and possibly run in the opposite direction?
Well, your colleagues in five cities, Philadelphia, Phoenix, Des Moines, San Francisco and Charleston, SC, played that very game with the Robert Wood Johnson Foundation and members of our Data for Health advisory committee along with the National Coordinator for Health Information Technology and members of her staff.
Boy, did they play.
Last fall in our initiative, Data for Health, the Foundation asked people in those places to spend an entire day talking with us about their hopes, aspirations, worries and concerns with using digital data to improve health.
Honestly, we weren’t at all certain people would play this particular game. We understood—in fact some people told us—that this discussion could seem turgid, distant, maybe even a boring academic hypothetical discussion.
That was not the case.
Turns out it was very easy to draw people into this conversation. People attended and engaged passionately and vigorously. It was a powerful thing to behold.
These people were very interested in using data to improve both their individual as well as their community’s health. Continue reading…
Chief information officers (CIOs) and chief medical information officers (CMIOs) have spent the better part of two decades on a quest for interoperability; yet, their Achilles heel lies in the “information” part of their titles. If information is the sole beacon of efficiency and value, the invaluable contours of human suffering, personal preferences and humanity itself are lost.
Information is the first step to developing knowledge and understanding, but what physicians and patients rely on in the real clinical setting, rife with changes, are knowledge, understanding and empathy. The cold, hard calculus of a=b does not always apply when dealing with people because they are much more complex and complicated than binary machines with screens. If it were so easy, there would be no problem reaching 100% compliance with medication or a plan of action.
Sadly, all data lives in a database; which might as well be called a wait-a-base; after all, the data just sits there and waits for someone to look at it.
The fundamental problem with today’s information architecture is that all data are not created equal. Data, information and knowledge degrade with each new doctor that becomes involved. In addition, systems design lacks an understanding of how the human computer works in the context of illness, anxiety or uncertainty. Healthcare is a people business in need of data, not a data business in need of people. Data are the means; people are the beginning and the end.