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July 27 2010

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: href="http://www.mirthcorp.com/">Mirth, href="http://www.vxvista.org/">vxVistA, and href="http://medsphere.org">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 blogs:

href="http://radar.oreilly.com/2010/07/day-one-of-the-health-care-it.html">
Day one of the health care IT track at O'Reilly's Open Source
convention

href="http://radar.oreilly.com/2010/07/vista-scenarios-and-other-cont.html">
VistA scenarios, and other controversies at the Open Source health
care track

and 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 href="http://www.softwarefreedom.org/news/2010/jul/21/software-defects-cardiac-medical-devices-are-life-/">report
on this issue.

HealthVault and open data on the web

Two brief talks from Microsoft programmers, href="http://www.oscon.com/oscon2010/public/schedule/detail/15292">
Vaibhav Bhandari and href="http://www.oscon.com/oscon2010/public/schedule/detail/14952">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 href="http://www.oscon.com/oscon2010/public/schedule/detail/15242">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, but I felt that his talk deserves 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 videotapes--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.

July 23 2010

VistA scenarios, and other controversies at the Open Source health care track

The history and accomplishments attributed to VistA, the Veterans
Administration's core administrative software, mark it as one of the
most impressive software projects in history. Still, lots of smart
people in the health care field deprecate VistA and cast doubt that it
could ever be widely adopted. Having spent some time with people on
both sides, I'll look at their arguments in this blog, and then
summarize other talks I heard today at the href="http://www.oscon.com/oscon2010">Open Source Convention
health care track.

Yesterday, as href="http://radar.oreilly.com/2010/07/day-one-of-the-health-care-it.html">I
described in my previous blog, we heard an overview of trends in
health care and its open source side in particular. Two open source
free software projects offering electronic health records were
presented, Tolven and href="http://www.oemr.org/">openEMR. Today was VistA day, and
those who stayed all the way through were entertained by accolades of
increasing fervor from the heads of href="http://www.oscon.com/oscon2010/public/schedule/detail/15291">vxVistA,
href="http://www.oscon.com/oscon2010/public/schedule/detail/15255">Medsphere,
and ClearHealth. (Anyone
who claims that VistA is cumbersome and obsolete will have to explain
why it seems to back up so many successful companies.) In general, a
nice theme to see today was so many open source companies making a go
of it in the health care field.

VistA: historical anomaly or the future of electronic medical systems?

We started our exploration of VistA with a href="http://www.oscon.com/oscon2010/public/schedule/detail/15274p">stirring
overview by Phillip Longman, author of the popular paperback book,
Best Care Anywhere: Why VA Health Care is Better Than
Yours
. The story of VistA's development is a true medical
thriller, with scenes ranging from sudden firings to actual fires
(arson). As several speakers stressed, the story is also about how the
doctors at the VA independently developed the key aspects of open
source development: programming by the users of the software, loose
coordination of independent coders, freedom to fork, and so on.

Longman is convinced that VistA could and should be the basis of
universal health records in the U.S., and rains down omens of doom on
the comprehensive health care bill if it drives physicians to buy
proprietary health record systems.

VistA is much more than an electronic health record system, and even
bigger than a medical system. It is really a constellation of hundreds
of applications, including food preparation, library administration,
policing, and more.

The two main objections to VistA are:


That it is clunky old code based on an obsolete language and database technology

As a project begun by amateurs, VistA probably contains some fearsome
passages. Furthermore, it is written in MUMPS (standardized by ANSI as
simply M), a language that dates from the time of LISP and
COBOL. Predating relational databases, MUMPS contains a hierarchical
database based on a B*-tree data structure.

Supporters of Vista argue that anything qualifying as "legacy code"
can just as well be called "stable." They can also answer each of
these criticisms:

  • The code has been used heavily by the VA long enough to prove that
    it is extendable and maintainable.

  • It is strangely hypocritical to hear VistA's use of MUMPS criticized
    by proprietary vendors when so any of them are equally dependent on
    that language. Indeed, the best-known vendors of proprietary health
    care software, including Epic and InterSystems, use MUMPS. Need I
    remind readers that we put a man on the moon using 1960s-style
    FORTRAN?

    It's interesting to learn, however, that ClearHealth is migrating
    parts of VistA away from MUMPS and does most of its coding in
    higher-level languages (and many modern programmers would hardly offer
    praise for the language chosen for ClearHealth's interface, PHP).

  • Similarly, many current vendors use the Cache hierarchical
    database. Aspersions concerning pre-relational databases sound less
    damning nowadays in an age of burgeoning interest in various NoSQL
    projects. Still, Medsphere and the community-based href="http://www.worldvista.org/">WorldVistA project are
    creating a SPARQL interface and a mechanism for extracting data from
    VistA into a MySQL database.


That it works well only in the unique environment of the Veterans Administration

This critique seems to be easier to validate through experience. The
VA is a monolithic, self-contained environment reflected in VistA. For
instance, the critical task of ordering prescriptions in VistA depends
on the pharmacy also running VistA.

Commercial pharmacies could theoretically interact with VistA, but it
would require effort on the part of those companies, which in turn
would depend on VistA being adopted by a substantial customer base of
private hospitals.

Several successful deployments of VistA by U.S. hospitals, as well as
adoption by whole networks of hospitals in several other countries,
indicate that it's still a viable option. And the presence of several
companies in the space shows that adopters can count on support.

On the other hand, the competing implementations by vxVistA,
Medsphere, and ClearHealth complicate the development landscape. It
might have been easier if a single organization such as WorldVistA
could have unified development as the Apache or GNOME foundation does.

vxVistA has come in for particular criticism among open source
advocates. In fact, the speakers at today's conference started
out defensive, making me feel some sympathy for them.

vxVistA's developers, the company DSS, kept their version of VistA
closed for some time until they had some established customers.
Speaker Deanne Clark argued that they did this to make sure they had
enough control over their product to produce some early successes,
warning that any failure would hurt the image of the whole VistA
community. I don't know why a closed development process is necessary
to ensure quality, but I'll accept her explanation. And DSS seems to
be regarded highly for its quality work by everyone, including those
who embroil

More galling to other open source advocates is that when DSS did
release vxVistA as open source, they did so under an Eclipse license
that is incompatible with the GPL used by WorldVistA.

I wouldn't dare guess whether VistA will continue as a niche product
or will suddenly emerge to eat up the U.S. market for electronic
medical systems. But I think it's definitely something to watch.

The odd position of the VA as the source for new versions of VistA, as
well as its role as VistA's overwhelmingly largest user, could also
introduce distortions into the open source development pattern outside
the VA. For instance, commercial backers of VistA are determined to
get it certified for meaningful use so that their clients can win
financial rewards from the Department of Health and Human
Services. But the VA doesn't have to be certified for meaningful use
and doesn't care about it. (As David Uhlman of ClearHealth pointed
out, nearly everything in the meaningful use criteria was done thirty
years ago by the VA using VistA.)

The VA even goes through periods of refusing bug fixes and
improvements from the outside community. Luckily, the VA lets some of
its programmers participate on WorldVistA forums, and seems interested
in getting more involved.

Other presentations

Attendance varies between 30 and 70 people for today's health care
session. Roni Zeiger of Google brought out a big crowd for his href="http://www.oscon.com/oscon2010/public/schedule/detail/15272">discussion
of Google's interest in health care, with a focus on how its API
accepts data from devices.

Zeiger pointed out that we lead most of our lives outside doctor's
offices (unless we're very unlucky) and that health information should
be drawn from everyday life as well. A wide range of devices can
measure everything from how fast we walk to our glucose levels. Even
if all you have is a smart phone, there are a lot of things you can
record. Collecting this kind of data, called Observations of Daily
Living, is becoming more and more popular.

  • One app uses GPS to show your path during a run.

  • Another app uses the accelerometer to show your elevation during a
    bike ride.

  • One researcher uses a sensor, stuck into an inhaler, to feed data to a
    phone and collect information on where and when people have asthma
    attacks. If we collect a lot of data from a lot of people over time,
    we may learn more about what triggers these attacks.

  • On the fun side, a Google employee figured out how to measure the
    rotation of bike pedals using the magnet in an Android phone. This
    lets employees maintain the right aerobic speed and record what how
    fast and their friends are peddling.

You can set up Google Health to accept data from these
devices. Ultimately, we can also feed the data automatically to our
doctors, but first they'll need to set up systems to accept such
information on a regular basis.

Will Ross href="http://www.oscon.com/oscon2010/public/schedule/detail/14944">described
a project to connect health care providers across a mostly rural
county in California and exchange patient data. The consortium
found that they had barely enough money to pay a proprietary vendor of
Health Information Exchange systems, and no money for maintenance. So
they contracted with
Mirth
Corporation
to use an open source solution. Mirth supports
CONNECT, which I described in
href="http://radar.oreilly.com/2010/07/day-one-of-the-health-care-it.html">yesterday's
blog, and provides tools for extracting data from structured
documents as well as exchanging it.

Nagesh Bashyam, who runs the large consulting practice that Harris
Corporation provides to CONNECT, href="http://www.oscon.com/oscon2010/public/schedule/detail/15267">talked
about how it can lead to more than data exchange--it can let a doctor
combine information from many sources and therefore be a platform for
value-added services.

Turning to academic and non-profit research efforts, we also heard
today from href="http://www.oscon.com/oscon2010/public/schedule/detail/15279">
Andrew Hart of NASA's Jet Propulsion Laboratory and some colleagues at
Children's Hospital Los Angeles. Hart described a reference
architecture that has supported the sharing of research data among
institutions on a number of large projects. The system has to be able
to translate between formats seamlessly so that researchers can
quickly query different sites for related data and combine it.

Sam Faus of Sujansky & Associates href="http://www.oscon.com/oscon2010/public/schedule/detail/15275">recounted
a project to create a Common Platform for sharing Observations of
Daily Living between research projects. Sponsored by the Robert Wood
Johnson Foundation to tie together a number of other projects in the
health care space, Sujansky started its work in 2006 before there were
systems such as Google Health and Microsoft Health Vault. Even after
these services were opened, however, the foundation decided to
continue and create its own platform.

Currently, there are several emerging standards for ODL, measuring
different things and organizing them in different ways. Faus said this
is a reasonable state of affairs because we are so early in the
patient-centered movement.

I talked about standards later with David Riley, the government's
CONNECT initiative lead. HHS can influence the adoption of standards
through regulation. But Riley's office has adopted a distributed and
participatory approach to finding new standards. Whenever they see a
need, they can propose an area of standardization to HHS's
specification advisory body. The body can prioritize these
requests and conduct meetings to hammer out a standard. To actually
enter a standard into a regulation, however, HHS has to follow the
federal government's rule-making procedures, which require an
eighteen-month period of releasing draft regulations and accepting
comments.

It's the odd trait of standards that discussions excite violent
emotions among insiders while driving outsiders to desperate
boredom. For participants in this evening's Birds of a Feather
session, the hour passed quickly discussing standards.

The 800-pound gorilla of health care standards is the HL7 series,
which CONNECT supports. Zeiger said that Google (which currently
supports just the CCR, a lighter-weight standard) will have to HL7's
version of the continuity of care record, the CCD. HL7 standards have
undergone massive changes over the decades, though, and are likely to
change again quite soon. From what I hear, this is urgently
necessary. In its current version, the HL7 committee layered a
superficial XML syntax over ill-structured standards.

A major problem with many health care standards, including HL7, is the
business decision by standard-setting bodies to fund their activities
by charging fees that put standards outside the reach of open source
projects, as well as ordinary patients and consumers. Many standards
bodies require $5.00 or $10.00 per seat.

Brian Behlendorf discussed the recent decision of the NHIN Direct
committee to support both SOAP versus SMTP for data exchange. Their
goal was to create a common core that lets proponents of each system
do essentially the same thing--authenticate health care providers and
exchange data securely--while also leaving room for further
development.

March 04 2010

Report from HIMMS Health IT conference: toward interoperability and openness

Yesterday and today I spent once again at the href="http://www.himss.org/">Healthcare Information and Management
Systems Society (HIMSS) conference in Atlanta, rushing from panel
session to vendor booth to interoperability demo and back (or
forward--I'm not sure which direction I've been going). All these
peregrinations involve a quest to find progress in the areas of
interoperability and openness.

The U.S. has a mobile population, bringing their aches and pains to a
plethora of institutions and small providers. That's why health care
needs interoperability. Furthermore, despite superb medical research,
we desperately need to share more information and crunch it in
creative new ways. That's why health care needs openness.

My href="http://radar.oreilly.com/2010/03/report-from-himms-health-it-co.html">blog
yesterday covered risk-taking; today I'll explore the reasons it's
so hard to create change.

The health care information exchange architecture

Some of the vendors I talked to boasted of being in the field for 20
years. This give them time to refine and build on their offerings,
but it tends to reinforce approaches to building and selling software
that were prominent in the 1980s. These guys certainly know what the
rest of the computer field is doing, such as the Web, and they reflect
the concerns for interoperability and openness in their own ways. I
just feel that what I'm seeing is a kind of hybrid--more marsupial
than mammal.

Information exchange in the health care field has evolved the
following architecture:

Electronic medical systems and electronic record systems

These do all the heavy labor that make health care IT work (or fail).
They can be divided into many categories, ranging from the simple
capturing of clinical observations to incredibly detailed templates
listing patient symptoms and treatments. Billing and routine workflow
(practice management) are other categories of electronic records that
don't strictly speaking fall into the category of health records.
Although each provider traditionally has had to buy computer systems
to support the software and deal with all the issues of hosting it,
Software as a Service has come along in solutions such as href="http://www.practicefusion.com/">Practice Fusion.

Services and value-added applications

As with any complex software problem, nimble development firms partner
with the big vendors or offer add-on tools to do what health care
providers find too difficult to do on their own.

Health information exchanges (HIEs)

Eventually a patient has to see a specialist or transfer records to a
hospital in another city--perhaps urgently. Partly due to a lack of
planning, and partly due to privacy concerns and other particular
issues caught up in health care, transfer is not as simple as querying
Amazon.com or Google. So record transfer is a whole industry of its
own. Some institutions can transfer records directly, while others
have to use repositories--paper or electronic--maintained by states or
other organizations in their geographic regions.


HIE software and Regional Health Information Organizations
(RHIOs)

The demands of record exchange create a new information need that's
filled by still more companies. States and public agencies have also
weighed in with rules and standards through organizations called
Regional Health Information Organizations.

Let's see how various companies and agencies fit into this complicated
landscape. My first item covered a huge range of products that
vendors don't like to have lumped together. Some vendors, such as the
Vocera company I mentioned in yesterday's blog and href="http://solutions.3m.com/wps/portal/3M/en_US/3M_Health_Information_Systems/HIS/">3M,
offer products that capture clinicians' notes, which can be a job in
itself, particularly through speech recognition. href="http://emdeon.com/">Emdeon covers billing, and adds validity
checking to increase the provider's chances of getting reimbursed the
first time they submit a bill. There are many activities in a doctor's
office, and some vendors try to cover more than others.

Having captured huge amounts of data--symptoms, diagnoses, tests
ordered, results of those tests, procedures performed, medicines
ordered and administered--these systems face their first data exchange
challenge: retrieving information about conditions and medicines that
may make a critical difference to care. For instance, I saw a cool
demo at the booth of Epic, one of
the leading health record companies." A doctor ordered a diuretic that
has the side-effect of lowering potassium levels. So Epic's screen
automatically brought up the patient's history of potassium levels
along with information about the diuretic.

Since no physician can keep all the side-effects and interactions
between drugs in his head, most subscribe to databases that keep track
of such things; the most popular company that provides this data is href="http://firstdatabank.com/">First DataBank. Health record
systems simply integrate the information into their user interfaces.
As I've heard repeatedly at this conference, the timing and delivery
of information is just as important as having the information; the
data is not of much value if a clinician or patient has to think about
it and go searching for it. And such support is central to the HITECH
act's meaningful use criteria, mentioned in yesterday's blog.

So I asked the Epic rep how this information got into the system. When
the physicians sign up for the databases, the data is sent in simple
CSV files or other text formats. Although different databases are
formatted in different ways, the health record vendor can easily read
it in and set up a system to handle updates.

Variations on this theme turn up with other vendors. For instance, href="http://www.nextgen.com/">NextGen Healthcare contracts
directly with First DataBank so they can integrate the data intimately
with NextGen's screens and database.

So where does First DataBank get this data? They employ about 40
doctors to study available literature, including drug manufacturers'
information and medical journals. This leads to a constantly updated,
independent, reliable source for doses, side-effects,
counterindications, etc.

This leads to an interesting case of data validity. Like any
researchers--myself writing this blog, for instance--First DataBank
could theoretically make a mistake. Their printed publications include
disclaimers, and they require the companies who licence the data to
reprint the disclaimers in their own literature. But of course, the
disclaimer does not pop up on every dialog box the doctor views while
using the product. Caveat emptor...

Still, decision support as a data import problem is fairly well
solved. When health record systems communicate with each other,
however, things are not so simple.

The challenges in health information exchange: identification

When a patient visits another provider who wants to see her records,
the first issue the system must face is identifying the patient at the
other provider. Many countries have universal IDs, and therefore
unique identifiers that can be used to retrieve information on a
person wherever she goes, but the United States public finds such
forms of control anathema (remember the push-back over Read ID?).
There are costs to restraining the information state: in this case,
the hospital you visit during a health crisis may have trouble
figuring out which patient at your other providers is really you.

HIEs solve the problem by matching information such as name, birth
date, age, gender, and even cell phone number. One proponent of the
federal government's Nationwide
Health Information Network
told me it can look for up to 19 fields
of personal information to make a match. False positives are
effectively eliminated by strict matching rules, but legitimate
records may be missed.

Another issue HIEs face is obtaining authorization for health data,
which is the most sensitive data that usually concerns ordinary
people. When requesting data from another provider, the clinician has
to log in securely and then offer information not only about who he is
but why he needs the data. The sender, for many reasons, may say no:

  • Someone identified as a VIP, such as a movie star or high-ranking
    politician, is automatically protected from requests for information.

  • Some types of medical information, such as HIV status, are considered
    especially sensitive and treated with more care.

  • The state of California allows ordinary individuals to restrict the
    distribution of information at the granularity of a single institution
    or even a single clinician, and other states are likely to do the
    same.

Thus, each clinician needs to register with the HIE that transmits the
data, and accompany each request with a personal identifier as well as
the type of information requested and the purpose. One service I
talked to, Covisint, can query
the AMA if necessary to verify the unique number assigned to each
physician in the us, the Drug Enforcement Administration (DEA) number.
(This is not the intended use of a DEA number, of course; it was
created to control the spread of pharmaceuticals, not data.)

One of the positive impacts of all this identification is that some
systems can retrieve information about patients from a variety of
hospitals, labs, pharmacies, and clinics even if the requester doesn't
know where it is. It's still up to them to determine whether to send
the data to the requester. Currently, providers exchange a Data Use
and Reciprocal Support Agreement (DURSA) to promise that information
will be stored properly and used only for the agreed-on purpose.
Exchanging these documents is currently cumbersome, and I've been told
the government is looking for a way to standardize the agreement so
the providers don't need to directly communicate.

The challenges in health information exchange: format

Let's suppose we're at the point where the owner of the record has
decided to send it to the requester. Despite the reverence expressed
by vendors for HL7 and other
standards with which the health care field is rife, documents require
a good deal of translation before they can be incorporated into the
receiving system. Each vendor presents a slightly different challenge,
so to connect n different products a vendor has to implement
n2 different transformations.

Reasons for this interoperability lie at many levels:

Lack of adherence to standards

Many vendors created their initial offerings before applicable
standards existed, and haven't yet upgraded to the standards or still
offer new features not covered by standards. The meaningful use
criteria discussed in yesterday's blog will accelerate the move to
standards.

Fuzzy standards

Like many standards, the ones that are common in the medical field
leave details unspecified.

Problems that lie out of scope

The standards tend to cover the easiest aspect of data exchange, the
document's format. As an indication of the problem, the 7 in HL7
refers to the seventh (application) layer of the ISO model. Brian
Behlendorf of Apache fame, now consulting with the federal government
to implement the NHIN, offers the following analogy. "Suppose that we
created the Internet by standardizing HTML and CSS but saying nothing
about TCP/IP and DNS."

Complex standards

As in other fields, the standards that work best in health records are
simple ones. There is currently a debate, for instance, over whether
to use the CCR or CCD exchange format for patient data. The trade-off
seems to be that the newer CCD is richer and more flexible but a lot
harder to support.

Misuse

As one example, the University of Pittsburgh Medical Center tried to
harmonize its problem lists and found that a huge number of
patients--including many men--were coded as smoking during pregnancy.
They should have been coded with a general tobacco disorder. As Dr.
William Hogan said, "People have an amazing ability to make a standard
do what it's not meant to do, even when it's highly specified and
constrained."

So many to choose from

Dell/Perot manager Jack Wankowski told me that even though other
countries have digitized their health records far more than the U.S.
has, they have a lot fewer published standards. It might seem logical
to share standards--given that people are people everywhere--but in
fact, that's hard to do because diagnosis and treatment are a lot
different in different cultures. Wankowski says, "Unlike other
industries such as manufacturing and financial services, where a lot
can be replicated, health care is very individual on a country by
country basis at the moment. Because of this, change is a lot slower."

Encumbrances

The UPMC coded its problem lists in ICD-9-CM instead of SNOMED, even
through SNOMED was far superior in specificity and clarity. Along with
historical reasons, they avoided SNOMED because it was a licensed
product until 2003 whereas ICD-9-CM was free. As for ICD-9-CM, its
official standard is distributed as RTF documents, making correct
adoption difficult.

Here are a few examples of how vendors told me they handle
interoperability.

InterSystems is a major
player in health care. The basis of their offerings is Caché,
an object database written in the classic programming language for
medical information processing, MUMPS. (MUMPS was also standardized by
an ANSI committee under the name M.) Caché can be found in all
major hospitals. For data exchange, InterSystems provides an HIE
called HealthShare, which they claim can communicate with other
vendors' systems by supporting HL7 and other appropriate standards.
HealthShare is both communications software and an actual hub that can
create the connections for customers.

Medicity is another key
HIE vendor. Providers can set up their own hubs or contract with a
server set up by Medicity in their geographic area. Having a hub means
that a small practice can register just once with the hub and then
communicate with all other providers in that region.

Let's turn again to Epic. Two facilities that use it can exchange a
wide range of data, because some of its data is not covered by
standards. A facility that uses another product can exchange a
narrower set of data with an Epic system over href="http://www.epic.com/software-interoperability.php">Care
Everywhere, using the standards. The Epic rep said they will move
more and more fields into Care Everywhere as standards evolve.

What all this comes down to is an enormous redundant infrastructure
that adds no value to electronic records, but merely runs a Red
Queen's Race to provide the value that already exists in those
records. We've already seen that defining more standards has a
limited impact on the problem. But a lot of programmers at this point
will claim the solution lies in open source, so let's see what's
happening in that area.

The open source challengers

The previous sections, like acts of a play, laid out the character of
the vendors in the health care space as earnest, hard-working, and
sometimes brilliantly accomplished, but ultimately stumbling through a
plot whose bad turns overwhelm them. In the current act we turn to a
new character, one who is not so well known nor so well tested, one
who has shown promise on other stages but is still finding her footing
on our proscenium.

The best-known open source projects in health care are href="http://openmrs.org/">OpenMRS, the Veterans Administration's
VistA, and the href="http://www.connectopensource.org/">NHIN CONNECT Gateway. I
won't say anything more about OpenMRS because it has received high
praise but has made little inroads into American health care. I'll
devote a few paragraphs to the strengths and weaknesses of VistA and
CONNECT.

Buzz in the medical world is that VistA beats commercial offerings for
usability and a general fit to the clinicians' needs. But it's
tailored to the Veterans Administration and--as a rep for the href="http://www.vxvista.org/">vxVistA called it--has to be
deveteranized for general use. This is what vxVistA does, but they are
not open source. They make changes to the core and contribute it back,
but their own products are proprietary. A community project called href="http://www.worldvista.org/">WorldVistA also works on a
version of VistA for the non-government sector.

One of the hurdles of adapting VistA is that one has to learn its
underlying language, MUMPS. Most people who dive in license a MUMPS
compiler. The vxVistA rep knows of no significant users of the free
software MUMPS compiler GT.M. VistA also runs on the Caché
database, mentioned earlier in this article. If you don't want to
license Caché from InterSystems, you need to find some other
database solution.

So while VistA is a bona fide open source project with a community,
it's ecosystem does not fit neatly with the habits of most free
software developers.

CONNECT is championed by the same Office of the National Coordinator
for Health Information Technology that is implementing the HITECH
recovery plan and meaningful use. A means for authenticating requests
and sending patient data between providers, CONNECT may well be
emerging as the HIE solution for our age. But it has some maturing to
do as well. It uses a SOAP-based protocol that requires knowledge of
typical SOA-based technologies such as SAML.

Two free software companies that have entered the field to make
installing CONNECT easier are href="http://www.axialexchange.com/">Axial Exchange, which creates
open source libraries and tools to work with the system, and the href="http://www.mirthcorp.com/">Mirth Corporation. Jon Teichrow
of Mirth told me how a typical CONNECT setup at a rural hospital took
just a week to complete, and can run for the cost of just a couple
hours of support time per week. The complexities of handling CONNECT
that make so many people tremulous, he said, were actually much easier
for Mirth than the more typical problem of interpreting the hospital's
idiosyncratic data formats.

Just last week, href="http://www.healthcareitnews.com/news/nhin-direct-launched-simpler-data-exchange">the
government announced a simpler interface to the NHIN called NHIN
Direct. Hopefully, this will bring in a new level of providers
who couldn't afford the costs of negotiating with CONNECT.

CONNECT has certainly built up an active community. href="http://agilex.com/">Agilex employee Scott E. Borst, who is
responsible for a good deal of the testing of CONNECT, tells me that
participation in development, testing, and online discussion is
intense, and that two people were recently approved as committers
without being associated with any company or government agency
officially affiliated with CONNECT.

The community is willing to stand up for itself, too. Borst says that
when CONNECT was made open source last year, it came with a Sun-based
development environment including such components as NetBeans and
GlassFish. Many community members wanted to work on CONNECT using
other popular free software tools. Accommodating them was tough at
first, but the project leaders listened to them and ended up with a
much more flexible environment where contributors could use
essentially any tools that struck their fancy.

Buried in href="http://www.healthcareitnews.com/news/blumenthal-unveils-proposed-certification-rule-himss10">a
major announcement yesterday about certification for meaningful
use was an endorsement by the Office of the National Coordinator
for open source. My colleague and fellow blogger Brian Ahier href="http://ahier.blogspot.com/2010/03/meaningful-certification.html">points
out that rule 4 for certification programs explicitly mentions
open source as well self-developed solutions. This will not magically
lead to more open source electronic health record systems like
OpenMRS, but it offers an optimistic assessment that they will emerge
and will reach maturity.

As I mentioned earlier, traditional vendors are moving more toward
openness in the form of APIs that offer their products as platforms.
InterSystems does this with a SOAP-based interface called Ensemble,
for instance. Eclipsys,
offering its own SOAP-based interface called Helios, claims that they
want an app store on top of their product--and that they will not kick
off applications that compete with their own.

Web-based Practice Fusion has an API in beta, and is also planning an
innovation that makes me really excited: a sandbox provided by their
web site where developers can work on extensions without having to
download and install software.

But to a long-time observer such as Dr. Adrian Gropper, founder of the
MedCommons storage service,
true open source is the only way forward for health care records. He
says we need to replace all those SOAP and WS-* standards with RESTful
interfaces, perform authentication over OpenID and OAuth, and use the
simplest possible formats. And only an enlightenment among the major
users--the health care providers--will bring about the revolution.

But at this point in the play, having explored the characters of
electronic record vendors and the open source community, we need to
round out the drama by introducing yet a third character: the patient.
Gropper's MedCommons is a patient-centered service, and thus part of a
movement that may bring us openness sooner than OpenMRS, VistA, or
CONNECT.

Enter the patient

Most people are familiar with Microsoft's HealthVault and Google
Health. Both allow patients to enter data about their own health, and
provide APIs that individuals and companies alike are using to provide
services. A Journal of Participatory
Medicine
has just been launched, reflecting the growth of interest
in patient-centered or participatory medicine. I saw a book on the
subject by HIMSS itself in the conference bookstore.

The promise of personal health records goes far beyond keeping track
of data. Like electronic records in clinicians' hands, the data will
just be fodder for services with incredible potential to improve
health. In a lively session given today by Patricia Brennan of href="http://www.projecthealthdesign.org/">Project HealthDesign,
she used the metaphors of "intelligent medicines" and "smart
Band-Aids" that reduce errors and help patients follow directions.

Project HealthDesign's research has injected a dose of realism into
our understanding of the doctor-patient relationship. For instance,
they learned that we can't expect patients to share everything with
their doctors. They get embarrassed when they lapse in their behavior,
and don't want to admit they take extra medications or do other things
not recommended by doctors. So patient-centered health should focus on
delivering information so patients can independently evaluate what
they're doing.

As critical patient data becomes distributed among a hundred million
individual records, instead of being concentrated in the hands of
providers, simple formats and frictionless data exchange will emerge
to handle them. Electronic record vendors will adapt or die. And a
whole generation of products--as well as users--will grow up with no
experience of anything but completely open, interoperable systems.

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