Wrap-up of the health care IT track at O'Reilly's Open Source convention

The first health care track to be included in an O’Reilly conference
covered all three days of sessions at last week’s Open Source
convention and brought us 22
talks from programmers, doctors, researchers, corporate heads, and
health care advocates
. We grappled throughout these three
days–which included two popular and highly vocal Birds of a Feather
gatherings–with the task of opening up health care.

It’s not surprising that, given this was an open source conference,
the point we heard from speakers and participants over and over again
was how critical it is to have open data in health care, and how open
source makes open data possible. Like most commercial fields, health
care is replete with managers and technologists who don’t believe open
source software can do the job of powering and empowering busy
clinicians in high-risk situations. Some of the speakers spent time
challenging that view.

I decided over the course of the week that the health care industry
has two traits that make it more conservative than many fields. On the
one hand, the level of regulation and certification is mind-boggling.
Hardly any technical job can be taken without a particular course of
training and a certificate. Privacy regulations–which are interpreted
somewhat differently at every clinic–get in the way of almost anyone
doing anything new. Software has to be certified too, not something
that software firms in most domains are accustomed to. All these
controls are in place for good reason, and help you feel safe
proffering your arm for a needle or popping the pills each day your
doctor told you to take.

Paradoxically, though, the health care field is also resistant to
change because the actors in it are so independent. Health care is the
most fragmented industry in the country, with 80% of medical practices
consisting of one or two physicians.

Doctors don’t like to be told what to do. A lot of them are not
persuaded that they should supplement their expert opinion with the
results of evidence-based medicine and clinical decision support, the
big campaigns right now among health care researchers and leaders
within the Administration, notably the recent appointee Donald Berwick
at the Centers for Medicare and Medicaid Services.

And even medical researchers are hard to gather around one set of
standards for data, because each one is looking for new ways to cut
and crunch the results and believes his or her approach is special.

So these are the conditions that software developers and vendors have
to deal with. Beckoning us forward are the Administration’s
“meaningful use” criteria, which list the things a health care record
system should do to improve health care and cut costs.

Open source definitely needs more commercial champions to bridge the
classic gap in packaging and support between the developer community
and the not-so-computer-savvy health care teams. We heard from three
such companies at the conference: Mirth, vxVistA, and Medsphere.

Of the major projects in electronic health records presented at the
conference –VistA, Tolven,
and openEMR–two were developed for
purposes outside the mainstream U.S. health care industry (VistA for
the Veterans Administration and openEMR for developing countries).
Although all these projects can point to successful installations in
mainstream organizations, they haven’t hit the critical mass that
makes inherently conservative health care practices feel comfortable
adopting them.

But in this specific area of electronic records, I think the
proprietary software vendors are equally challenged to show that they
can meet the nation’s needs. After some thirty years, they have become
common only in large hospitals and penetrated only a small number of
those small providers I mentioned before. The percentage of health
care providers who use electronic health records is between 18 and the
low 20’s.

Licensing can easily be $15,000 per year per doctor, which small
practices just don’t have. I won’t harp on this, because converting
old records costs more than the licenses, and converting your whole
workflow and staff behavior is harder still. More disturbing is that a
large number of providers who go through the strain of installing
electronic records find that they don’t produce cost savings or other
benefits.

Electronic records have been a success at huge providers like Partners
in Massachusetts and Kaiser Permanente in California, but one speaker
reported that Kaiser had to spend one billion (yes, that’s a “b”)
dollars to implement the kinds of data exchange and quality control
functions specified by the meaningful use criteria.

But we have to look pass the question of who would win the race to
digitize the offices of doctors in the U.S.–and around the world–and
envision a more open health care system where data can drive
high-quality care. I covered the first two days of the health care
track in the following posts:

I’ll summarize the tracks from day 3 here.

Open source for the things that keep you alive


Karen Sandler, a lawyer from the Software Freedom Law Center,
spoke
about the hundreds of thousands of devices–pacemakers,
insulin delivery devices, defibrillators, and others–that are
implanted in people’s bodies each year. These devices fail sometimes,
and although reports do not classify which failures are caused by
software problems, some of them pretty clearly are.

The FDA does not audit software as part of the approval process for
devices, although it occasionally requires the manufacturer to show it
the software when failures are reported. Devices are also controlled
by unencrypted messages over ordinary wireless connections. (The
manufacturers avoid encryption in order to spare the device’s
battery.) In short, software with control over life and death is being
installed in millions of people with essentially no regulation.

Sandler’s key policy call is to force the source code open for
auditing purposes. She also would like to see open hardware and give
the patients the right to alter both hardware and software, although
these are more remote possibilities. Sandler’s talk, based both on
careful research and painful personal health experiences, drew a
sizeable audience and excited fervent sympathy. The talk was aptly
timed just as the SFLC released a report
on this issue
.

HealthVault and open data on the web

Two brief talks from Microsoft programmers,
Vaibhav Bhandari
and Teddy
Bachour
, did a nice job of introducing key standards in the health
care field and showing how flexible, carefully designed tools could
turn those standards into tools for better patient and doctor control
over data.

I felt that standards were underrepresented in our health care track,
and scheduled a BOF the night before where we discussed some of the
general issues making standards hard to use. Bhandari showed a few of
the libraries that Microsoft HealthVault uses to make standards useful
ways to store and manipulate health data. Bachour showed the use of
Microsoft toolkits, some open source in CodePlex.

As an example of what programmers can do with these libraries and
toolkits, the Clinical Documentation Solution Accelerator enhances
Microsoft Word enhanced so that, as a doctor enters a report of a
patient visit, Word can prompt for certain fields and offer a
selection of valid keywords for such fields as diagnoses and
medications.

Data mining with open source tools

David Uhlman, who had spoken on Thursday about VistA and his company
ClearHealth, ended the
health care track with a dazzling
tour
applying neural network analysis, genetic algorithms,
visualization, and other tools to basic questions such as “How many of
my patients are likely to miss their visits today?” and common tasks
such as viewing multiple lab results together over time.

Every conference has to have a final session, of course, and every
final session suffers from decreased attendance. So did Uhlman’s
scintillating talk, and I left convinced that his presentation
deserved more attention because he goes to the heart of our job in
health care IT: to take the mounds of new data that electronic records
and meaningful use will generate and find answers to everyday problems
bedeviling practitioners.

Luckily, Uhlman’s talk was videotaped–as were all the others that I
reported in my three blogs–and will be put on the Web at some point.
Stay tuned, and stay healthy.

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