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Tag: Data

Not Everything that Counts Can Be Counted

Have you ever wished that instead of choosing a single answer on a multiple choice exam you could write an essay instead to show how you are thinking about the question? It happened to me many times, particularly on my medical board exams, where the object seemed more to guess what the question writers were thinking than to get at the depth of my knowledge. And even though each question typically had a menu of 5 possible answers, the message was binary: right vs.wrong. There was never room for anything between these two extremes. Yet this middle ground is where most of our lives take place.

This “yes/no” is a digital philosophy, where strings of 0s and 1s act as switches for the information that runs our world. These answers are easily quantifiable because they are easily counted. But what are we quantifying? What are we counting? Has the proliferation of easily quantifiable standardized testing led us to more and deeper knowledge? I think we all know the answer to that question. Yet are heading in the same direction with electronic medical data? Let me explain what I mean.

There was an interesting discussion yesterday on a listserv I am a part of about structured vs. unstructured (narrative) clinical data. I don’t often jump into these discussions (believe it or not), but this time I had to make my views heard, because I believe they are similar to the views of many clinicians.

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Meaningful Consent

One major issue facing private and public Health Information Exchanges (HIE) is how to ensure patients privacy preferences are respected by obtaining their consent before data is shared.

Today I met with a multi-disciplinary team of attorneys, vendor experts, and IT leaders to discuss BIDMC’s approach to private HIE consent.

After two hours of discussion, here’s what we agreed upon:

Patients and families should be able to control the flow of their data among institutions.  The ability for the patient to chose what flows where for what purpose is “meaningful consent.”

To achieve “meaningful consent” we will ask all the patients of our 1800 BIDMC associated ambulatory clinicians to opt in for data sharing among the clinicians coordinating their care.

Patients may revoke this consent at any time.

Consent for patients under 18 years old and not emancipated will be sought from their parents.   Upon turning 18, the patients themselves will select their consent preferences.

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A (Real) Tragedy at the CDC

At the recent Health Care Quality Summit in Saskatoon, Sarah Patterson, the Virgina Mason Medical Center expert on Lean process improvement, noted,  “I’d rather have no board rather than an out-of-date board. They have to be real.”  She was referring to the PeopleLink Board that is placed is key locations in her hospital to provide real-time visual cues to front-line staff as to how they are doing in meeting quality, safety, work flow, and other metrics in the hospital.

Now comes the CDC, announcing in April 2012, that 21 states had significant decreases in central line-associated bloodstream infections between 2009 and 2010.

CDC Director Thomas R. Frieden, said “CDC’s National Healthcare Safety Network is a critical tool for states to do prevention work. Once a state knows where problems lie, it can better assist facilities in correcting the issue and protecting patients.”

I am trying to be positive when progress is made, and I am also trying to be respectful of our public officials — whom I know to be dedicated and well-intentioned — but does Dr. Frieden really believe that posting data from 2009 and 2010 has a whit of value in helping hospitals reduce their rate of infections?

Try to imagine how you as a clinical leader, a hospital administrator, a nurse, a doctor, a resident, or a member of the board of trustees would use such data.  Answer:  You cannot because there is not use whatsoever.

I am also perturbed by the CDC’s insistence on using a “standardized infection ratio” as opposed to a simple count of infections or rate of infections per thousand patient days.

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A Funny Thing Happened on the Way to Meaningful Use

This July will mark the 16th anniversary of the installation of our electronic medical record.

Yup.  I am that weird.

Over the first 10-14 years of my run as doctor uber-nerd, I believed that widespread adoption of EHR would be one of main things to drive efficiency in health care.  I told anyone I could corner about our drive to improve the quality of our care, while keeping our cash-flow out of the red.  I preached the fact that it is possible for a small, privately owned practice to successfully adopt EHR while increasing revenue.  I heard people say it was only possible within a large hospital system, but saw many of those installations decrease office efficiency and quality of care.  I heard people say primary care doctors couldn’t afford EHR, while we had not only done well with our installation, but did so with one of the more expensive products at the time.  To me, it was just a matter of time before everyone finally saw that I was right.

The passage of the EHR incentive program (aka “meaningful use” criteria) was a huge validation for me: EHR was so good that the government would pay doctors to adopt it.  I figured that once docs finally could implement an EHR without threatening their financial solvency, they would all become believers like me.

But something funny happened on the way to meaningful use: I changed my mind.  No, I didn’t stop thinking that EHR was a very powerful tool that could transform care.  I didn’t pine for the days of paper charts (whatever they are).  I certainly didn’t mind it when I got the check from the government for doing something I had already done without any incentive.  What changed was my belief that government incentives could make things better. They haven’t.  In fact, they’ve made things much worse.

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What The Emergence of an EMR Giant Means For the Future of Healthcare Innovation

(Note: the following commentary was co-authored with Tory Wolff, a founding partner of Recon Strategy, a healthcare strategy consulting firm in Boston; Tory and I gratefully acknowledge the insightful feedback provided by Jay Chyung of Recon Strategy.)

Medicine has been notoriously slow to embrace the electronic medical record (EMR), but, spurred by tax incentives and the prospect of cost and outcomes accountability, the use of electronic medical records (EMRs) is finally catching on.

There are a large number of EMR vendors, who offer systems that are either the traditional client server model (where the medical center hosts the system) or a product which can be delivered via Software as a Service (SaaS) architecture, similar to what salesforce.com did for customer relationship management (CRM).

Historically, the lack of extensive standards have allowed hospital idiosyncrasies to be hard-coded into systems.  Any one company’s EMR system isn’t particularly compatible with the EMR system from another company, resulting in – or, more fairly, perpetuating – the Tower of Babel that effectively exists as medical practices often lack the ability to share basic information easily with one another.

There’s widespread recognition that information exchange must improve – the challenge is how to get there.

One much-discussed approach are health information exchanges (HIE’s), defined by the Department of Health and Human Services as “Efforts to rapidly build capacity for exchanging health information across the health care system both within and across states.”

With some public funding and local contributions, public HIE’s can point to some successes (the Indiana Health Information Exchange, IHIE, is a leading example, as described here).  The Direct Project – a national effort to coordinate health information exchange spearheaded by the Office of the National Coordinator for Health IT – also seems to be making progress.  But the public HIEs are a long way from providing robust, rich and sustainable data exchange.

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The Importance of Data and Care Coordination

This house believes that society benefits when we share information online! This was the topic of debate before the Economist magazine’s Ideas Economy: Information 2012 conference here in San Francisco on Tuesday afternoon. Tom Standage, digital editor for the Economist, moderated this lively battle of wits.

Defending the motion was John Perry Barlow, former Grateful Dead lyricist and co-founder of the Electronic Frontier Foundation. “This is a little like defending sex!” he started off by saying.

I am paraphrasing here but he went on to say, ‘The Internet is an environment where what is great about human beings can manifest itself…collectively we are much smarter than any individual. Just as my mitochondria are unaware of my thoughts, we are largely unaware of our collective genius.’

I could not agree more.

Opposing the motion was Andrew Keen, Internet entrepreneur and author of “Cult of the Amateur.”

Again, paraphrasing, ‘Repressive governments and private companies who make the 1% look poor, are also benefitting. Most of the information is being stolen,’ Keen said. ‘Today everything has to be social.’

Keen rails against our intimate selves being taken from us and traded on by bazzilionaires, with not much coming back to we, the sharers. ‘Barlow would not be who he is, if he not had his years of very aloneness,’ said Keen, paraphrased.

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Lightning Strikes Datapalooza


It didn’t appear on the lightning strike map, but lightning did indeed strike a young medical student inside the Washington Convention Center right in front of about 1,500 amazed spectators on the first day of The Health Data Initiative Forum III: The Health Datapalooza.  Everyone is fine—though our medical student may never be the same again.

Actually, this story began long before Datapalooza, of course.  Fourth-year medical student, Craig Monsen, and his Johns Hopkins Medical School classmate, David Do, started collaborating on software applications soon after they met in first-year anatomy class.  Craig graduated from Harvard with degrees in Engineering and Computer Science and David from University of Minnesota in Bioengineering.

They’re not quite Jobs and Wozniak—neither dropped out of anything—yet—although Craig, at least, is planning to skip or delay residency.  You see, after seeing the Robert Wood Johnson Foundation (RWJF) Aligning Forces for Quality Developer Challenge last year—they got very serious about bringing to life their vision of new applications that could help patients and consumers make great health care decisions.

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Sex Sells (or at Least Leads to Some Interesting Analytics)


One guarantee in the healthcare sector is that when it comes to personal health information (PHI), there is no lack of issues and pundits to discuss security and privacy of such information/data. If one does not jump up and down bleating on about the sanctity of PHI and the need to protect it at all costs, well then you may be labeled a heretic and burned at the proverbial stake.

Now don’t get us wrong. Here at Chilmark Research we firmly believe that your PHI is arguably the most personal information you have and you do have a right to know exactly how it is used. Whether or not you own it remains to be seen for we have seen, read and heard one more than one occasion – some healthcare providers believe that it is their data, not yours, and may only begrudgingly give you access to some circumscribed portion of your PHI that they have stashed in their vast HIT fortress, or worse, scattered in a number of chart folders.

But where we do differ with many on the sanctity of PHI is that the collective use of our de-identified PHI on a community, regional, state or even national level can give us some amazing insights into what is working and what is not in this convoluted thing we call a healthcare system in the US and needs to be strongly supported. Unfortunately, we do a terrible job as a country in educating the populace on the collective value of their data to understand health trends, treatments and ultimately ascertain accurate comparative effectiveness. This leaves the door wide open for others to use the old FUD (fear uncertainty and doubt) factor to keep patients from actively sharing their de-identified PHI.

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TEDMED 2012: Atul Butte

[youtube width=”520″ height=”270″]http://www.youtube.com/watch?v=dtNMA46YgX4[/youtube]

Supporters of the Big Data movement argue that data will change everything, but only once we break down the institutional and technological barriers that prevent us from getting at it. In his talk at TEDMED 2012 at the Kennedy Center, Stanford’s Atul Butte argues that the we already have more than enough to do real science, if only we know where to look.

Making Privacy Policies Not Suck

Privacy policies are long legalese documents that obfuscate meaning. Nobody reads them because they are indecipherable and obtuse. Yet, these are the documents that tell you what’s going on with your data — how, when, and by whom your information will used. To put it another way, the privacy policy lets you know if some company can make money from information (like selling you email to a spammer).

Creative Commons did an amazing thing for copyright law. It made it understandable.

Creative commons reduced the complexity of letting others use your work with a set of combinable, modular icons.

In order for privacy policies to have meaning for actual people, we need to follow in Creative Commons footsteps. We need to reduce the complexity of privacy policies to an indicator scannable in seconds. At the same time, we need a visual language for delving deeper into how our data is used—a set of icons may not be enough to paint the rich picture of where you data is going.

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