by Andrew Oram
This was originally published on O’Reilly Media’s Strata blog, June 4, 2013.
Computing practices that used to be religated to experimental outposts are now taking up residence at the center of the health care field. From natural language processing to machine learning to predictive modeling, you see people promising at the health data forum (Health Datapalooza IV) to do it in production environments.
As with any conference, the second day of the Datapalooza had fewer people—over 2000 people registered overall—and less energy than the first. But the impressive parade of key figures in the health care field continued to light up the stage:
Numerous other excellent speakers and deeply knowledgeable panelists joined these luminaries. And we must not forget the hilarious game show where doctors and insurance managers competed to guess what Medicare recipients care about, based on CMS surveys, in hospitals and health plans.
The references to the CMS surveys, which were conducted in a rigorously validated fashion, were more than fun. The surveys are invaluable for helping health institutions learn what their patients want and what matters. For instance, during the game show, the doctors guessed that a patient would consider average length of stay very important when selecting a hospital. It turns out that this level of sophistication is way beyond the ken of the average Medicare patient. Length of stay doesn’t turn up as a concern at all in their survey responses.
But this doesn’t mean patients are stupid or that their concerns shouldn’t drive health care. More on patient engagement later in this article.
In I bemoaned the lag in the development
of standards, among other things needed to advance the use of patient
data.
The state of standards in health care can be compared to the web.
Widespread adherance to the HTTP standard (as well as underlying
protocols such as TCP, of course) makes it easy for a programmer to
download a web page. Every modern language has a simple HTTP API. But
once you get the page, understanding the data is more difficult.
Usually, you’re reduced to the old "scraping" model, which requires
you to visually inspect the HTML, derive some general principles
behind the page’s organization, and hope that it won’t change. Web
programmers recognize the difficulties and have stepped up with
various mini-standards, including microformats and a handful of new
tags in HTML5.
We can see a need for standards all over the health care field: the
sharing of research data, the recording of device output, the exchange
of patient records, and more.
I discussed research data in my coverage of Sage
Congress, a summit on data sharing that brings together leaders in
genetics and pharmaceutical research. I pointed out that research
results, like web pages, are loosely structured, and mentioned a
researcher who had trouble comparing two experiments that measured
everything the same way except for medication doses.
Numerous standards have been developed to allow devices to send
central systems their data. But I think the spread of consumer
electronics for Quantified Self, along with the patient-centered
medical home, will put strain on the standards, on the systems
collecting data, and most of all on the electronic health
records. Coordinating devices adds an extra layer of sophistication to
the simple task of accepting data from each device separately.
But the nub of patient care, in terms of data, is the individual
health record, and that’s where the big challenges lie. My article
yesterday contained a modest critique of the Office of the National
Coordinator, vaguely claiming they have been "slow to impose order." I
managed to annoy a friend of mine at the ONC, and promised to explore
the question further today. After all, didn’t the ONC promote two
protocols for data exchange, CONNECT and Direct? Haven’t they been
guiding the health care field toward practices that streamline secure
and private exchange, such as DirectTrust and the recent implementation
guidelines to assure security and interoperability over Direct?
And didn’t the Stage 2 rules Meaningful Use remove much of the mush
around standards, decreeing the use of Direct for exchange and the
Consolidated CDA as a format?
All those advances are worth citing. But there is much to be done.
Let’s take a few moments to look over the history of the continuity of
care document (CCD), which used to be a couple pages sent with each
discharged patient to his or her next institution (a rehab clinic,
nursing home, or whatever) and is now in electronic form. A consortium
standardized the format of this document in a sleek XML format called
the CCR, standing for "continuity of care record."
The CCR became an instant hit in the IT community, adopted by both
Microsoft HealthVault and the short-lived Google Health—but with
incompatible changes in each case. This early lack of consistency
suggests that perhaps the CCR was not as wonderful as its designers
hoped. An expert in health care records has also told me that the CCR
was not rich and flexible enough to accommodate the information needed
in the field.
But these weaknesses were not why the HL7 standards body decided to
create their own document format in direct competition with the
CCR. Rather, HL7 didn’t like the CCR because it didn’t implement HL7’s
Clinical Document Architecture (CDA), a complex XML structure that HL7
had designed as a basis for its various specifications. So HL7
designed its own Continuity of Care Document (CCD) format.
The CCR committee had struck off in its own direction for good
reasons. HL7 standards had evolved in an ungainly manner over the
decades, and the new XML documents such as the CDA were thinly wrapped
versions of earlier idiosyncratic formats. I have been told that HL7
XML documents often failed XML validation suites. The need for the HL7
CCD format to adhere to the basic CDA format introduced complexity. A
lack of specificity allowed vendors to wander off in incompatible
directions and produce documents that required individual programmer
attention to be harmonized.
The CCR really couldn’t form the basis for a national standard, but
many of us were still disappointed that the HL7 CCA was adopted as the
law of the land in Meaningful Use Stage 2. I’ve put that past me now,
because I realize that the whole debate has the slightly musty feel of
an outdated technology, like the debate of the mid-2000s between the
office document formats, ODF versus OOXML.
The continuity of care document is a relic of an age when doctors
thought they could just give the next doctor down the line a diagnosis
and a medication listing, and they were done. Modern accountable care
requires much more. Doctors must share comprehensive access to all the
patient visits, test results, and treatment outcomes.
We can’t think of data exchange as a discrete event at the seam
between one treatment setting and another, but as a continuous
activity spanning the patient’s life. We are on the verge of a data
deluge that will render the continuity of care document nearly
irrelevant. Worrying about its format is like going to a barbecue and
arguing over the brand of ketchup. Instead, we must make sure
standards apply to the data that really matters. The chance to start
anew is what excites me about
Blue Button, and why I
complained in yesterday’s
article about the loose approach to maintaining it as an
interoperable standard.
I think Bryan Sivak and Farzad Mostashari were speaking partly of
standardized records when they said the ONC efforts were still
"scratching the surface" of the data gap in health care today. The
interface between electronic patient records, research, and medical
devices needs work. And so I stand by my mild statement about the ONC.
Although I am not a fan of Linked Data,
the World Wide Web Consortium’s solution to information muddiness, I
think it may be useful in the health care field because the Linked
Data tools, in all their complexity, are distinctly simpler than the
complexity of health data, and therefore are worth the application of
good minds. Linked Data requires a lot of analysis to straighten out
the chaos of everyday life, but this too is a useful exercise because
of the value of health data. Two sessions on Linked Data were offered
today at the Datapalooza.
I saw only two persons identified in panels as patient advocates, and
met only a few others who identified themselves that way at the
Datapalooza. But the modern zeal for giving patients more respect and
control ran through the onference. It came up in Todd Park’s keynote
and among other speakers, and motivated many of the apps on display.
One well-attended session covered basic privacy issues. We heard some
of the themes that I have reported on before, such as how doctors
claim HIPAA as an excuse for denying patients access to their own
data, whereas HIPAA actually requires the doctor to allow access.
Perhaps the most impressive example at the conference of a large
corporation paying sincere attention to patient empowerment was Pfizer Link, a site using Blue
Button to give patients in clinical trials access to their own data.
In the world of clinical research, this is a radical proposition.
Craig Lipset, Head of Clinical Innovation for Pfizer, explained that
only 5% of all patients participate in clinical trials. The industry
has long been aware that the lack of volunteers adds significant
delays to almost all studies. Pfizer is hoping that opening up patient
access to data, along with news and relevant information on trials,
will increase participation.
MedWatcher is an example of
harnassing informed patient input to improve health care. After
downloading the app, a person can report symptoms and any adverse
effects he feels from a medication. MedWatcher combines and
de-identifies this information along with reports from social media
such as Twitter and Facebook, with the goal of revealing risks in
medication use.
This app had a personal resonance for me because a relative of mine
had recently collapsed and spent 24 hours undergoing
electrocardiograms and other intensive tests. The collapse was
eventually attributed to a new drug he had started taking, and I
wonder whether he could have recognized the symptoms of fainting
earlier and avoided the extremely expensive trip to the emergency
room. The incident is a reminder: all of us are not only patient
advocates—we are also patients.
Author’s home pageWe are all patient advocates
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