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July 22 2010

Day one of the health care IT track at O'Reilly's Open Source convention

I think the collective awe of health care aficionados at the href="http://www.oscon.com/oscon2010">Open Source Convention came
to a focal point during our evening Birds of a Feather session, when
open source advocate Fred Trotter, informally stepping in as session
leader, pointed out that the leaders of key open source projects in
the health care field were in the room, including two VistA
implementors (Medsphere and href="http://www.worldvista.org/">WorldVistA), href="http://www.tolvenhealth.com/">Tolven, and href="http://wwwf.oemr.org/">openEMR--and not to forget two other
leading health care software initiatives from the U.S. government, href="http://www.connectopensource.org">CONNECT and href="http://nhindirect.org/">NHIN Direct.

This meeting, which drew about 40 doctors, project leaders,
programmers, activist patients, and others, was the culmination of a
full day of presentations in the first track on health care at an
O'Reilly conference. The day's sessions unveiled the potential of open
source in health care and how dedicated implementors were making it a
reality, starting with an scene-setting talk by Tim O'Reilly that
attracted over 75 people and continuing through the next seven hours
until a dwindling hard core delayed drinks and hors d'oeuvres for half
an hour to hear a final late talk by href="http://www.oscon.com/oscon2010/public/schedule/detail/13943">Melanie
Swan on DIYgenomics.

Nine talks representing the breadth of a vital programming area can't
be summarized in one sentence, but for me the theme of the day was
open source advocates reaching out to solve pressing problems that
proprietary vendors will not or cannot address.

Tim O'Reilly's talk laid out key elements of the health care
revolution: electronic records, the quantified self (measuring one's
bodily activities), and the Internet of things that allows one to track
behavior such as whether a patient has taken his medicine.

Talk to me

We were honored to have key leaders from Health and Human Services
speak at today's conferences about its chief open source projects. href="http://www.oscon.com/oscon2010/public/schedule/detail/13257">David
Riley and Brian Behlendorf (known best for his work on Apache)
came from the Office of the National Coordinator along with lead
contractor href="http://www.oscon.com/oscon2010/public/schedule/detail/15304">Arien
Malec to show us the current status and--most exciting--the future
plans for CONNECT and NHIN Direct, which are key pieces of the
Administration's health care policy because they allow different
health care providers to exchange patient information securely.

I have href="http://radar.oreilly.com/2010/07/health-and-human-services-fina.html">written
recently about "meaningful use" for health care records. Malec
provided a homespun and compelling vision of the problems with the
current health care system: in contrast to the old days where doctors
knew every patient personally, modern health care is delivered as
episodic interventions. As Fred Trotter said in his talk, we've
reached the limit of what we can achieve through clinical efforts.
Doctors can do miracles compared to former times, but the problems we
suffer from increasingly call for long-range plans. Malec said that
health care systems need to remember us. That's what
electronic health records can do, combined with the data exchange
protocols provided by NHIN.

Riley, in what is likely to be one of the most revisited talks of the
conference--yes, we recorded the sessions and will put them
online--rapidly laid out the architecture of CONNECT and what's
planned for upcoming releases. Requests between agencies for health
care data have gone from months to minutes with CONNECT. Currently
based on SOAP, it is being refactored so that in the future it can run
over REST, XMPP, and SMTP.

NHIN Direct, the newer and more lightweight protocol, is also based on
digital certificates and uses S/MIME with SMTP over TLS. Parties can
do key exchange themselves or work through a trusted third party. It
seems to me, therefore, that CONNECT and NHIN Direct will eventually
merge. It is as if the NHIN Direct project was started to take a big
step back from CONNECT, look at what it achieved for the government
agencies that produce or consume health care and how the same benefits
could be provided to health care providers all over the country, and
to formalize an architecture that would become the new CONNECT.

NHIN is an even more impressive case of open government and
collaborative development than CONNECT. The public was involved from
the earliest design stage. Some people complained that established
vendors bent the process to preserve their advantages, but they
probably had less success this way than if HHS followed normal
government procedures. NHIN already has reference implementations in
Java and C#. If you're inspired to help bring health records to the
public, you can read the wikis and attend some training and contribute
reference implementations in your language of choice.

In addition to supporting the NHIN Direct protocol, some of the
upcoming features in CONNECT include:

  • Identity management services. This will probably be based on a
    voluntary patient identifier.

  • Support for meaningful use criteria.

  • Support for structured data, allowing the system to accept input in
    standards such as the CCR or CCD and populate documents. One feature
    enabled by this enhancement will be the ability to recognize sensitive
    health data and remove it before sending a record. (CONNECT can be
    used for all health-related data, not just personal medical records.)

  • Moving to the Spring Framework.

Riley has done some pretty rigorous cost analysis and determines that
careful management--which includes holding costs down and bringing
multiple agencies together to work on CONNECT--has reduced development
costs from over 200 million dollars to about 13 million dollars.
Recent code sprints drew heavily from community volunteers: 4 or 5
volunteers along with 12 contractors.

In an href="http://www.oscon.com/oscon2010/public/schedule/detail/15296">overview
talk, Deborah Bryant of OSU Open Source Lab raised the issue
continuity in relation to NHIN and CONNECT. Every open source project
has to figure out how to keep a community of volunteers interested so
that the project continues to evolve and adapt to changing
circumstances. Government-backed projects, she admitted, provide
funding over a sustained period of time, but this does not obviate the
need for community management.

In addition, CONNECT is run by a consulting firm with paid contractors
who have to learn how to accept community input and communicate with
outsiders. Behlendorf said that simple things like putting all code
in Subversion and all documentation on a wiki helps. Consultants are
also encouraged to request feedback on designs and to talk about the
goals of sprints as far as possible in advance.

IntraHealth International manages the basic health care resource: people

The problems of the developing world were represented most directly by
the open source human resource information system href="http://www.intrahealth.org/">IntraHealth International,
presented by href="http://www.oscon.com/oscon2010/public/schedule/detail/15268">
Carl Leitner. IntraHealth International helps many Sub-Saharan and
South Asian countries manage one of their most precious and dwindling
resources: health care professionals. The system, called iHRIS lets
individual hospitals as well as whole nations determine where their
most pressing staffing needs lie, break down staff by demographic
information such as age and gender (even language can be tracked), and
track their locations.

Training is one of the resources that must be managed carefully. If
you know there's a big gap between the professionals you need and ones
you have, you can direct scarce funding to training new ones. When
iHRIS records expenditures, what do countries often find? Some
administrator has splurged on sending himself to the same training
program over and over, just to get the per diem. Good information can
expose graft.

Open source is critical for a system like iHRIS, not just because
funds are scarce, but because localization is critical. Lots of
languages whose very existence is hidden from proprietary vendors need
to be supported. Each country also has different regulations and
conditions. IntraHealth International holds regular unconferences,
mentoring, and other forms of training in its target countries in the
hope of (in Leitner's words) putting themselves out of business. Of
course, trained IT staff tend to drift into higher-paying jobs, so the
organization tries to spread the training over many people.

OpenEMR and Tolven

The overarching challenge for any electronic health record system, if
its developers hope it to be taken seriously over the next couple
years in the United States, is support for meaningful use criteria.
Proprietary systems have, for several decades, met the needs of large
institutions with wads of cash to throw at them. And they will gain
certification to support meaningful use as well. But smaller providers
have been unable to afford these systems.

The need for an open source solution with meaningful use certification
is pressing, and two project leaders of OpenEMR devoted href="http://www.oscon.com/oscon2010/public/schedule/detail/14893">their
talk to their push to make their system ready. They estimate that
they have implemented about 80% of the required functionality, but
more slowly than expected. Extraordinary measures were required on
many fronts:

  • Medical experts had to read thousands of pages of specifications as
    they came out, and follow comments and debates to determine which
    requirements would likely be dropped or postponed, so as not to waste
    development time.

  • Contractors were hired to speed up the coding. Interestingly, the
    spike in productivity created by the contractors attracted a huge
    number of new volunteers. At one point openEMR became number 37 on
    SourceForge in terms of activity, and it is still up around 190. The
    project leaders had to upgrade some of their infrastructure to handle
    an increased number of commits. They also discovered that lack of
    documentation was a hindrance. Like the CONNECT team, they found that
    maintaining a community required--well, maintenance.


  • Project leaders had to go to Washington and argue with government
    bureaucrats to change requirements that would have essentially made it
    impossible for open source projects to meet the meaningful use
    requirements. They succeeded in removing the offending clauses, and
    believe they were also responsible for winning such accomplishments as
    allowing sites to certify modules instead of entire stand-alone
    systems. Nevertheless, some aspects of certification require
    contracts with proprietary vendors, such as lab interface, which is
    done through a proprietary company, and drug-to-drug and
    drug-to-allergy interactions, which require interaction with expensive
    databases.

Tony McCormick pointed out that the goal of meaningful use
certification provided a focus that most open source projects lack.
In addition, the government provided tests (called scripts) that
served as a QA plan.

Meaningful use, as much as it represents an advance over today's
health information silos, does not yet involve the patient. The
patient came to the fore in two other talks, one by href="http://www.oscon.com/oscon2010/public/schedule/detail/13943">Melanie
Swan on her company DIYgenomics and the other by href="http://www.oscon.com/oscon2010/public/schedule/detail/15051">Tom
Jones on Tolven.

Swan summarized the first two generations of DNA sequencing (which
went a bit above my head) and said we were on the verge of a third
generation that could bring full genome sequencing down to a cost that
consumers could afford. A part of the open science movement,
DIYgenomics helps patients combine with others to do research, a
process that is certainly less rigorous than controlled experiments
but can provide preliminary data that suggests future research. For
many rare conditions, the crowdsourced approach can fill a gap that
professional researchers won't fill.

In addition to providing access to studies and some other useful
apps--such as one that helps you evaluate your response to
drugs--DIYgenomics conducts its own longitudinal studies. One current
study checks for people who do not absorb vitamin B12 (folic acid)
properly, a condition to which up to half the population is
vulnerable. Another study, for which they are seeking 10,000
participants, covers aging.

Jones's talk centered on privacy, but spread its tent to include the
broader issues of patient-centered medicine. Tolven simultaneously
supports records held by the doctor (clinical health records) and by
the patient (personal health records).

In a system designed especially for the Netherlands--where privacy
laws are much stricter and better specified than in the United
States--Tolven stores medical records in large, centralized
repositories because it's easier to ensure security that way. However,
strict boundaries between doctors prevent them from viewing each
other's data. Even more significantly, data is encrypted during both
transmission and storage, and only the patient has the key to unlock
it. Audit trails add another layer of protection.

In this architecture, there are no release forms. Instead, the patient
explicitly approves every data transfer. (Patients can designate
special repositories to which their relatives have access, in case of
emergencies when they're not competent to make the transfer.)

That was one day of health care at OSCon--two more are coming up. We
started our evening BOF with introductions, but more and more people
kept coming in the room, and everyone was so interesting that the
introductions ended up taking the entire hour allocated for the BOF.
The sense that our health care system needs to change radically, and
the zeal expressed to take part in that change, brought energy into
the room. This was a great place to meet like-minded people.

May 19 2010

What I like about the health care technology track at the Open Source convention

OSCON Conference 2010The href="http://www.oscon.com/oscon2010/public/schedule/topic/Health">list
of sessions at the Open Source convention's health care track was
published this week. We found it wonderfully gratifying to get so many
excellent submissions in the brief three weeks that the Request for
Proposals was up. Although the credentials of the presenters cover a
lot of impressive accomplishments, my own evaluation focused on how
the topics fit into four overarching areas we're following at
O'Reilly:

  • Patient-centered records, education, and activity

  • Mobile devices to collect and distribute health care information

  • Administrative efficiencies, which could range from automating a
    manual step in a process to revising an entire workflow to eliminate
    wasteful activities

  • The collection, processing, and display of statistics to improve
    health care

Our OSCon track has something to say in all these areas, and lots
more. Here's what I like about each of the proposals we chose.

  • Nobody sees just one doctor or stays in just one hospital. So one of
    the pressing needs in health care is to remove the barriers to
    exchanging patient records, while ensuring they go only to authorized
    recipients. A project called the Nationwide Health Information Network
    (NHIN), currently run by the U.S. Department of Health and Human
    Services, acts as a broker for the authorizations and data exchanges
    between health care providers.

    NHIN has taken on a new excitement over the past couple years for two
    reasons involving the two great motivators in policy work: people and
    money. The people-based motivator came when HHS opened up key parts of
    the NHIN software and actively built a nationwide community to make it
    more usable. The money-based motivator came from the federal stimulus
    bill, which allocated billions to promote electronic records and data
    exchange.

    HHS's Office of the National Coordinator handles implementation of the
    stimulus bill. Their schedule for payments (and penalties too, in the
    case of providers accepting Medicare and Medicaid) is aggressively
    short, making progress urgent. NHIN work includes two major
    initiatives taking on the challenge of data exchange.

    The first initiative is NHIN CONNECT, a platform for interconnecting
    the patient health data systems of hospitals, health care providers,
    and federal health agencies. David Riley and Brian Behlendorf,
    contractors to HHS on this project, href="http://www.oscon.com/oscon2010/public/schedule/detail/13257">will
    recount the steps in creating a robust community around
    CONNECT. Will Ross will give us the view from the ground, as a href="http://www.oscon.com/oscon2010/public/schedule/detail/14944">regional
    Health Information Exchange sets up and carries out data transfers
    among clinics in a rural area. Nagesh Bashyam will give more href="http://www.oscon.com/oscon2010/public/schedule/detail/15267">insight
    into the CONNECT development process.

    The second initiative is a new project called href="http://nhindirect.org/">NHIN Direct, which is focused on a
    more "push"-oriented approach to secure messaging in the healthcare
    industry. Its core principles include "rough consensus and running
    code", and is on a breakneck pace to get from user stories to
    production implementation by the end of the year. Arien Malec, a
    health IT industry entrepreneur who leads the NHIN Direct effort as a
    contractor to HHS, will describe href="http://www.oscon.com/oscon2010/public/schedule/detail/15304">the
    history and mission of the project.

  • The Veterans Administration went over a ten- or fifteen-year period
    from being one of the least satisfactory health care providers in the
    US to one of the most highly praised. Its classic electronic medical
    system, VistA, is a key component of that success, and VistA has been
    open source for several years. None of the leading-edge initiatives
    mentioned earlier in this blog can be accomplished without an
    electronic medical system, and proprietary ones have the disadvantages
    not only of high cost but of being silo'd. Open source systems
    facilitate both innovative enhancements and data exchange.

    Ben Mehling href="http://www.oscon.com/oscon2010/public/schedule/detail/15255">will
    introduce VistA, its open source distributions, and how community
    contributors are adapting it to civilian use. Joseph Dal Molin
    will show href="http://www.oscon.com/oscon2010/public/schedule/detail/15274">how
    it improves patient care and the health care delivery
    process. David Uhlman will continue the discussion with href="http://www.oscon.com/oscon2010/public/schedule/detail/15252">lessons
    from working with VistA code.

  • OpenEMR is one of the most
    ambitious projects started by an open source community in health care.
    Like VistA, OpenEMR is being prepared for certification along the
    "meaningful use" criteria defined by HHS, so doctors can get federal
    funds for using it. Tony McCormick and Samuel Bowen href="http://www.oscon.com/oscon2010/public/schedule/detail/14893">will
    talk about advances in OpenEMR.

  • In an age where people are talking back to the experts and striving to
    gain more control as consumers, citizens, and patients, we can no
    longer treat health care as a one-way delivery system administered by
    omniscient, benevolent providers. Sam Faus will describe a href="http://www.oscon.com/oscon2010/public/schedule/detail/15275">open
    source system for maintaining and delivering data to
    patients. Teddy Bachour will cover href="http://www.oscon.com/oscon2010/public/schedule/detail/14952">APIs
    and open source toolkits from Microsoft for clinical documentation and
    sharing of patient records
    , and Roni Zeiger will cover href="http://www.oscon.com/oscon2010/public/schedule/detail/15272">how
    Google Health's API facilitates interactions with mobile devices,
    thus supporting one of the key trends in health care mentioned earlier
    in this blog.

  • Scientific research can deliver almost futuristic advances in health
    care, although the gap between promising lab results and effective
    treatments is always frustrating and difficult to bridge. In addition,
    statistics are critical for clinical decision support, now popularized
    under the term "evidence-based medicine."

    Melanie Swan shows how to href="http://www.oscon.com/oscon2010/public/schedule/detail/13943">bring
    ordinary people into the research process in genetics. Chris
    Mattmann, David Kale, and Heather Kincaid will describe a href="http://www.oscon.com/oscon2010/public/schedule/detail/15279">partnership
    between NASA and Children's Hospital Los Angeles to master and
    harness the recalcitrant mass of clinical data and data formats.
    Thomas Jones will talk about an href="http://www.oscon.com/oscon2010/public/schedule/detail/14931">open
    source system to link patient information with research to improve
    care.

  • Medicine is moving from coarse-grained, invasive treatments such as
    surgery and drugs to subtler, data-driven interventions using a
    variety of devices. Karen Sandler will describe a href="http://www.oscon.com/oscon2010/public/schedule/detail/13978">personal
    experience that led her to a campaign for open source medical
    devices.

  • Privacy is one of the touchiest subjects in health care. Few of us
    risk real harm--such as losing our jobs or having our names splayed
    across tabloid headlines--from privacy breaches, but there have been
    instances of snooping and embarrassing breaches that make us skittish.

    Thomas Jones will describe
    efforts to secure patient records in the Netherlands
    and how they
    can apply to US needs. The talk shows the potential that comes from
    giving patients access to their records, as well as the the advanced
    state of some foreign initiatives in health care are.

  • While we argue over access and costs in the US, most of the world has
    trouble seeing a doctor at all. Dykki Settle and Carl Leitner will
    describe href="http://www.oscon.com/oscon2010/public/schedule/detail/15268">tools
    that can help underserved areas recruit and manage critical health
    care staff. The talk will be a sobering reminder of the state of
    health care across continents, and a ray of hope that technology
    offers even in situations of great deprivation. The talk is also an
    illustration of the use of technology to improve an administrative
    process.

  • Fred Trotter, a long-time leader in open source health care, and open
    source advocate Deborah Bryant will provide overviews of href="http://www.oscon.com/oscon2010/public/schedule/detail/14856">open
    source health care IT. David Uhlman summarizes href="http://www.oscon.com/oscon2010/public/schedule/detail/15242">open
    source technologies for interpreting health care data.

The health care track takes a proud place as part of a href="http://www.oscon.com/oscon2010/public/schedule/grid">huge,
diverse conference program at this year's Open Source
convention. I'm sure discussions at the sessions and BOFs will
reveal connecting threads between health care IT and the other classic
open source topics at the conference.

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May 01 2010

Report from Health Information Technology in Massachusetts

When politicians organize a conference, there's obviously an agenda--beyond the published program--but I suspect that it differed from the impressions left by speakers and break-out session attendees at Health Information Technology: Creating Jobs, Reducing Costs, & Improving Quality.

A quick overview of what I took away from the conference is sobering.
Health care costs will remain high for many years while
institutionalize measures intended to reduce them. Patients will still
have trouble getting their records in electronic form to a different
doctor (much less access it themselves). And quality control will make
slow headway against the reluctance of doctors to share data on
treatment outcomes.

Still, I have to give the optimists their due, and chief among the
optimists is Richard Shoup, director of the href="http://maehi.org/">Massachusetts eHealth Institute and one
of the conference's key organizers. He points out that the quality
control measures emerging at the federal level (the "meaningful use"
criteria for electronic health records) meshes excellently with both
the principles and the timing legislated in href="http://www.mass.gov/legis/laws/seslaw08/sl080305.htm">Section
305 in the Massachusetts health care bill. Massachusetts has a
long history of health care IT deployment and of collaboration to
improve quality. "All stakeholders are at the table," he says, and the
Massachusetts eHealth Institute recently floated a href="http://www.maehi.org/HIT/plan.html">statewide plan for
implementing health care IT.

A conference fraught with political meaning

Gov 2.0 Expo 2010There was no doubt that politicians high up in the federal and Massachusetts governments respected the significance of this conference, which was also called the Governors National Conference (no missing apostrophe here; the conference really did draw representatives from many governors). Attendees included Massachusetts governor Deval Patrick (who came straight from the airport to speak), Senate president Therese Murray, US Surgeon General Regina Benjamin, and health care national coordinator David Blumenthal. I haven't even mentioned the many other scheduled speakers who could not attend for one reason or another.

As Governor Patrick indicated, Massachusetts is an excellent locale
for this conference. Besides the high concentration of medical
institutions that attract patients from around the world, and a decent
number of innovative research facilities, we are leaders in electronic
physician order entry and other aspects of health care IT.

I wondered, though, why no venue for this conference could be found in
the Longwood medical area. It would require handling the crowds
differently, but perhaps the main drawback is that Longwood would
swamp the out-of-towners in attendees from local institutions. But
instead, we were located in the new conference center area of Boston,
a place devoid of signs of life even though it's only a fifteen-minute
walk from the bustling financial district.

The conference met the needs of both the state and federal
administrations. Patrick hit on three major topics on many people's
minds: adding jobs, lowering health care premiums for small
businesses, and reducing the burden of health care in local
governments.

The pressures at the state level are out in full view. A recent flap
frightened the health care industry when insurers proposed annual
insurance policy increases of up to 22% and the administration slapped
them down. Although an annual 22% raise is clearly unsustainable,
imposing arbitrary limits (known as capitation) usually leads to
equally arbitrary denials of care instead of the creative fine-tuning
required to intelligently eliminate waste. I noted today that Paul
Tang, who is responsible for defining meaningful use for the federal
stimulus bill, says that to improve quality, the health care system
has to move from fee-for-service to paying for outcomes, but that we
don't yet know how to do make such a major change.

As mentioned earlier, the Massachusetts health care bill as well as
the federal recovery and health care bills include ways to collect
data, analyze it, and disseminate results meant to raise quality while
lowering costs. I have to say that I'll believe it when I see it,
because "doing the right thing" (as David Blumenthal called the
implementation of electronic health records) has to fight barriers put
up consciously or unconsciously by medical institutions, individual
doctors, and electronic health record vendors.

Nationally, both the stimulus package and the health care bill
stipulate very ambitious goals and extremely accelerated
schedules--and still, many people worry that the incentives aren't
strong enough to make them come to pass.

David Blumenthal lays out the stimulus package

The Department of Health and Human Services, to administer the
billions of dollars provided in the stimulus package and the demands
on health care providers that may dwarf that appropriation, set up the
Office of the National Coordinator with the task of making and
administering regulations. David Blumenthal came from Boston back to
Washington to take on the job of National Coordinator, and
practitioners in health care now hang on his every word.

Under such circumstances, one has to look beyond the official aspects
of Blumenthal's keynote and look at particular inflections or
emphases. Most telling to me was his metaphor of putting heath care
providers on an escalator. The point was that no matter what problems
they encounter, they should keep moving. It's OK to start slow (he
spoke of making the first step low enough) as long as the institution
keeps adding functions along the sequence specified in the ONC
documents.

Given the extensive goals in using electronic records, sharing data
with relevant agencies, and improving clinical care, Blumenthal made
some statements one could see as defending the initiatives. He pointed
out that when the goals were circulated for public comment, many
people questioned the ambitiousness or timing, but hardly anybody
challenged the direction they were taking or the value of the goals.

He did admit some of the barriers we are collectively facing:

  • The unmatched diversity this country presents in geography,
    demographics, income and educational levels, political philosophies,
    etc.

  • The risk of holding back innovation. As standards are specified in
    more detail, they increase the chance that conforming implementations
    will interoperate, but also the chance that future advances in a field
    will be hard to reflect in product improvements. (John Halamka, CIO of
    Harvard Medical School and an advisor to the federal government on
    implementing health care policy, issued a similar warning on his panel
    the next day.)

  • Resilient problems with privacy. It's worth mentioning, in this
    regard, a study cited by a lawyer on a a later panel, David Szabo.
    Fears of privacy hold back many people from using personal health
    records, and are cited even by a large percentage of people who use
    them. Only 4% of respondents trusted HIPAA to protect them. But many
    say they would start using personal health records if privacy laws
    were improved.

The high-level priorities cited by Blumenthal were to help small and
rural providers who have few resources (the task of Regional Extension
Centers, a new institution in health care created by the stimulus
bill) to get data in the hands of patients, and to "make electronic
systems so easy to use that doctors can't wait to turn them on in the
morning." I'll return to this sunny notion later.

Patient-centered care

As I claimed in an href="http://radar.oreilly.com/2010/03/report-from-himms-health-it-co-1.html">
earlier blog, the revolution that will really crack open the
electronic health record field is the need to share data with and
among patients. The same point was raised today by Paul Tang.

One of the barriers to giving data to patients is that, frankly, it's
not in a form they can use. Current records are fashioned more toward
insurance claims than clinical needs. They can be confusing and
positively frightening to someone who doesn't understand the peculiar
circumstances that drive the entries. Doctors are consequently
reluctant to open current records to patients. Barbra Rabson also said
that this dominance of billing data makes it hard to collect useful
data for quality control, but that it will be several years before
doctors provide the clinical data that will provide a better basis for
analysis.

Themes that came up throughout the conference suggested that
improvements in health require patient education. Some speakers
objected to using the term "patient" because that already implies
ill-health and sets up a situation where the professional health
provider is in control.

John Halamka said that the recently passed federal health care bill
requires health care systems to make it possible for all patients to
get electronic access to their data.

How can we get patients to use this power? They need to understand,
first of all, the benefits of having access to their data. John Moore,
who promotes patient-centered care at href="http://chilmarkresearch.com">Chilmark Research, said that
for many people this will begin at the office, because some companies
require employees to take some responsibility for managing their own
insurance. Patient records may become more widely used as patients
find value in them far beyond tracking their treatment: to order
refills of medicine, make follow-up appointments, and so on.

Next, patients have to learn the value of adding to that data, and how
to do so. (Another problem with patient-centered care is that some
patients deliberately or mistakenly enter incorrect information or
fail to record important events.) As US Surgeon General Regina
Benjamin pointed out in a teleconferenced talk, we have to design a
patient-centered system that can be used even by illiterate patients,
who are quite common in our country and who need perhaps even more
assistance than the people who can read this blog.

With all these practices in place, patients can turn to comprehending
the information they get back and using it to improve the quality of
their lives. One doctor even pushed to pay patients for complying with
treatment plans, to put some responsibility for outcomes on the
patient.

Girish Kumar Navani, CEO of the eClinicalWorks health record vendor,
mentioned that involving patients in their care provides a powerful
motivation to expand access to high-bandwidth Internet.

Privacy came up in this talk, as it did in nearly every one. David
Szabo reassured us that there are more legal protections in place than
we tend to admit. Many patient record sites post privacy policies. The
FTC, and many state attorneys general, vigorously these policies. What
Szabo did not address--because, I suppose, it fell outside legal
considerations--was the risk of data breaches, which should concern us
because attacks on health care repositories are on the rise.

Data exchange

One pediatrician recounted a teeth-clenching story of a doctor who
moved his practice to another hospital and instantly lost electronic
access to all his records. Any patient who wants to stay with him will
have to obtain records in printed form and have them re-entered at the
new hospital. This frustrating scenario gets repeated at every level
of the national health system as systems trap data in proprietary
formats.

Several members of the ONC have boasted how their specifications for
electronic records and health information exchanges say nothing about
architecture, being "technology neutral." One can interpret this as
modest caution, but could we also see in it a veiled plea for help, an
acknowledgment that current standards and protocols aren't up to the
task?

While many people criticize the vendors of electronic health systems
for incompatibility, Micky Tripathi, president of the Massachusetts
eHealth Collaborative, said that doctors are more to blame. The
doctors have assigned no importance to sharing data with other doctors
or with responsible agencies, and just demand electronic systems that
allow them to continue with their old workflows and require the least
possible change in behavior. One doctor in a break-out session
reported that doctors use the systems inconsistently or enter data in
unstructured comments instead of fields designated for that data, so
that automatic searching and aggregation of data becomes impossible.


Tripathi pointed out that standards in themselves don't get people to
communicate. The history in every field is that people start to feel a
burning need to communicate; systems and standards then emerge from
that. The very early days of telephony resembled today's health
information exchanges: you needed a separate phone and a
point-to-point line for each person you wanted to talk to. Even in
1901, the United States had 2,811 independent phone networks.
(Tripathi didn't point out that it took heavy-handed government
mandates to bring that number down to one, and that this AT&T
network eventually became a bottleneck--if not a chokepoint--for
innovation.) His main point remains valid: most systems start out
cumbersome and expensive before best practices and standards help them
converge on elegant solutions.

Along those lines, a commenter in one forum praised the New England
hospital network, NEHEN, and claimed that it started before
applications were available, but generated innovative applications.
J. Marc Overhage, a leader in the use of electronic records for
clinical decision support, added a cute reference to McDonald's, which
waits for a highway to be built before putting a restaurant at the
interchange.

Daniel Nigrin, CIO of Children's Hospital, also praised NEHEN but
reminded us it was designed only for doctors, not patients.

I talked to managers at Coping
Systems
, a firm that helps hospitals assess their quality of care
by analyzing statistics and presenting them in visual displays. The
biggest barrier Coping Systems face is the willingness of hospitals to
share data. Patient data must be anonymized, of course, but sometimes
hospitals won't share data about quality of care unless the name of
the institution is removed. Even by looking at their own data in
isolation, though, a hospital or an individual doctor can discover
insights that change treatment. They can check the expected versus
actual outcomes for individual doctors, for a doctor working with a
particular nurse, for a particular time of the day, etc.

Tang mentioned a simple example of how public health could be improved
by data collection. During last year's rush to provide H1N1 flu
vaccines to the most critical people, the government divided the
limited supplies up geographically. Some areas with high
concentrations of vulnerable people were severely constrained, and if
we had data about the locations of people who needed the vaccine, we
could have distributed it on a much fairer basis.

John Halamka, while acknowledging that many current standards for
electronic records are adequate for the task, called for better
standards to classify patients and treatments. Right now, for
instance, it's hard to define who is diabetic, which makes it hard to
compare statistics about the treatment of diabetics by different
doctors. A recent ONC meeting, covered in href="http://radar.oreilly.com/2010/04/hit-standards-committee-addres.html">another
Radar post, discussed standards for health IT.

Halamka said that electronic records, for which he is a strong
advocate, will catch on when doctors realize they facilitate new
activities that the doctors could never do before. In this way Halamka
fleshed out and energized Blumenthal's dream of "electronic systems so
easy to use that doctors can't wait to turn them on in the morning."
Whether this involves improvements to public health or something more
closely aligned to doctors' day-to-day practices, good planning will
help doctors, patients, and researchers all move toward a brighter
health care future.

Related:

March 26 2010

Why health care is coming to the Open Source convention

This year for the first time, O'Reilly's Open Source convention
contains a track on health care IT. The href="http://www.oscon.com/oscon2010/public/cfp/108">call for
participation just went up, soliciting proposals on nine broad
areas of technology including health data exchange, mobile devices,
and patient-centered care.

One correspondent asked a bit timidly whether it would be all right to
submit a proposal if her company didn't use open source software.
Definitely! The Open Source convention has always been about a wide
range of computing practices that promote openness in various ways.
Open source software is a key part of the picture but not the whole
picture. Open data, standards, and collaborative knowledge sharing are
also key parts of the revolution in today's health care.

This new track is as much a response to urgings from friends and
colleagues as it is an O'Reilly initiative. We could use help
spreading the word, because the deadline for proposals is tight. In
this blog I'll explain why we created the track and why OSCon is a
promising venue for trends that will move and shake health care in
positive ways.

The obvious draw is that there's a huge opportunity for open source
software and open data initiatives to make a difference in how
electronic medical records are stored and shared. Last year's Federal
stimulus bill (the American Recovery and Reinvestment Act) included
$20 billion dollars in payments to hospitals, doctors, and medical
practices if they demonstrate "meaningful use" of electronic health
records.

Apart from the opportunity to make a difference, this huge infusion of
money means that there's financial opportunity in Health IT. IT specialists
and programmers across the country who have lost their employment or
are just seeking new challenges will naturally be wondering what
health care IT is and how they can get into it. A health care track at
OSCon is, to start with, a natural way to serve our core audience.

But we want the track to be much more.

Health care IT is burgeoning, but the standards and technologies
aren't yet up to the challenge:

  • The government is paying doctors to adopt electronic records, but they
    have the devil of a time sending those records to other doctors--quite
    a problem if your primary care doctor makes a referral to a specialist
    or if you feel chest pains and go to an ER while visiting a strange
    city.

  • A wonderful range of specialized mobile devices, as well as popular
    applications for cell phones, let doctors enter data right at the
    patient's bed side or while walking down the hall. Even voice-to-text
    translation is available. But once in the system, these notes are hard
    to parse and process.

  • Patients are learning to take charge of their own health data, and
    lots of health care providers, not to mention Google and Microsoft,
    offer them access to such data. But getting data in and out is hard.
    Google and Microsoft provide APIs, but both the calls and the formats
    are incompatible. Most systems don't have APIs. Security standards and
    best practices are also lacking.

  • Evidence-based medicine is the white knight of current proponents for
    reducing errors and costs. But because of the incompatibilities
    already mentioned, systems can't share data in secure and
    easy-to-program ways.

So the U.S.--and the rest of the world, including areas with
heretofore inadequate health care--is currently on the cusp of an
unimaginably large revolution in health care IT, but it's tripping
over basic roadblocks in data exchange.

The flip side of each challenge, of course, is an opportunity. Open
standards and open APIs will attract a broad range of IT talent and
help lead to more flexible technologies that stand up better as the
environment evolves. O'Reilly as a company, and our Open Source
convention in particular, have been involved with many of the
innovations made by open source developers, and we are excited to
bring more of this community and this experience into health care IT.

O'Reilly was one of the early promoters of the term "open source" (and
the recognized leaders in documentation for free software long before)
as well as the originators of the term Web 2.0 and organizers of
conferences on transparency in government and "government as a
platform," or Government 2.0. People trying to use APIs and open
source software to create open platforms flock to OSCon. It's a major
industry venue for announcements and a place where people talk
together to come up with new technical ideas.

We believe that advances in APIs, giving data to patients, open source
software, and interactive mobile devices will free health care IT. We
don't know precisely which technologies will win out or how the whole
thing will fit together--so we want to use OSCon to help figure that
out.

Help us make OSCon a platform for developing platforms. Submit
proposals, tell your friends, and make your travel plans for Portland
in July.

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