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June 21 2012

The state of Health Information Exchange in Massachusetts

I recently attended the Massachusetts Health Data Consortium's (MHDC) conference on Health Information Exchange (HIE), modestly titled "The Key to Integration and Accountability." Although I'm a health IT geek, I felt I needed help understanding life outside the electronic health record (EHR) world. So, I roped in Char Kasprzak, statistical data analyst at Massachusetts Health Quality Partners, to give me a better picture of the quality implications of HIE (and to help me write this post).

John Halamka, CIO of Caregroup/Beth Israel Deaconess Medical Center, took the stage first and blasted through all the progress being made establishing the necessary frameworks for HIE to occur in Massachusetts. The takeaway message from John's talk was that there have been many changes since September 2011 in the financial, technical, and legal structures involved in building health information exchange. The lessons learned from the initial pilot should enable Massachusetts to be ready for the first stage of statewide HIE.

HIE development in Massachusetts

Health care providers historically thought of HIE as a large institution run by a state or a major EHR vendor. It carried out the exchange of patient records in the crudest and most heavyweight way, by setting up one-to-one relationships with local hospitals and storing the records. (Some of the more sophisticated HIEs could link together hospitals instead, rather like Napster linked together end-users for file exchange.) These institutions still dominate, but HIE is now being used in a much broader sense, referring to the ability of institutions to share data with each other and even with patients over a variety of channels.

Despite the push for the health IT industry to use "HIE" as a verb rather than a noun, there was quite a lot of discussion at the event surrounding the structures and applications involved. Although HIE should be conceptually identified as a process (verb), having the structures and organizations (nouns) necessary to facilitate exchange is a challenge facing health care entities across the country. This conference did a good job of articulating these organizational challenges, and it presented clear plans on how Massachusetts is addressing them.

In Massachusetts, the model moving forward for phase one of HIE will be based on the Direct Project, with one central Health Information Service Provider (HISP) that will focus on PKI and S/MIME certificate management, maintaining a provider/entity directory, creating a web portal for those not ready for Direct, and maintaining an audit log of transactions. The concept of HISP was created in the Direct Project Implementation and Best Practices workgroups, and was designed to be an organizational and functional framework for the management of directed exchange between health care providers. The statewide HISP will consist of several existing HISP organizations, including Berkshire Health, Partners, Athena Health, and the New England Health Exchange Network. No small task, but not insurmountable.

I remain skeptical about the ability of providers and even hospitals to install EHRs capable of sending Direct-compliant messages conforming to the XDR/XDM IHE Profile for Direct Messaging. Not that it doesn't work or because it's some Herculean task, but essentially because it hasn't been mandated. That may change, though, with the inclusion of Direct Messaging in the transport standards for Meaningful Use Stage 2. In Massachusetts, the creation of a health information highway (phase 1) is set to go live on October 15, 2012. Phase 2 will include analytics and population health, and Phase 3 is set to have search and retrieve, which will include a governance model for an Electronic Master Patient Index (EMPI) and Record Locator Service (RLS). Phase 2 and 3 will set a framework for querying patient data across entities, which is one of the biggest technical barriers to HIE. Currently, one of the best methods for this process is the Patient Identifier Cross-Referencing (PIX) profile, but few organizations are using this tool to its full potential.

What are the challenges?

When experts talk about exchanging health information, they tend to focus on the technology. Micky Tripathi, CEO and executive director of the Massachusetts eHealth Collaborative, pointed out at the event that the problem isn't the aggregation or analysis of data, but the recording of data during the documentation process. In my experience, this is quite accurate: Having exchange standards and the ability to analyze big data is useless if you don't capture the data in the first place, or capture it in a non-standard way. This was highlighted when the Massachusetts eHealth Collaborative ran the same reports on 44 quality measures, first using popHealth data, then again with Massachusetts eHealth Collaborative data, and received conflicting results for each measure. There are certainly lessons to be learned from this pilot about the importance of specifying numerators, denominators, vocabularies, and transmission templates.

Determining what to capture can be as important as how the data is captured. Natasha Khouri elaborated on the challenges of accurate data capture during her presentation on "Implementing Race and Ethnicity Data Collection in Massachusetts Hospitals — Not as Easy as It Sounds." In 2006, Massachusetts added three new fields and 33 categories to more accurately record race and ethnicity information. The purpose of this is to address health disparities, which is something I'm very excited to see discussed at a health IT conference.

With accurate data in hand, direct interventions in communities can be more targeted and effective. However, the largest barrier to this seems to have been getting providers to ask questions about race and ethnicity. This was due to high training costs, staff resistance, and workflow changes necessary for collecting the demographic data. This problem was particularly interesting to me, having worked with the Fenway Health Institute to craft their Meaningful Use Stage 2 comments regarding the inclusion of gender identity and sexual orientation in the demographics criteria. Recording accurate data on vulnerable populations is vital to improving public health campaigns.

What about patients?

For a conference with no patient speakers, there was a surprising amount of discussion about how patients will be involved in HIE and the impact EHRs have on patients. Dr. Lawrence Garber,who serves as the medical informatics director for Reliant Medical Group, examined issues of patient consent. The research he discussed showed that when given the choice, about 5% of patients will opt out of HIE, while 95% will opt in. When patients opt in at the entity/organizational level, this enables automated exchange between providers, entities, care teams, and patients. Organizations utilize a Data Use and Reciprocal Support Agreement (DURSA) to establish a trust framework for authenticating entities that exchange data (presumably for the benefit of patients). DURSAs will likely play an important role as organizations move toward Accountable Care Organization models of care.

Information exchange should also lead to more patient satisfaction with their medical visits, where they will be able to spend more time talking to their doctors about current concerns instead of wasting time reviewing medical history from records that may be incomplete or inaccessible.

Dana Safran, VP of performance measurement and improvement at Blue Cross Blue Shield, explained at the conference that patients can expect better quality of care because quality improvement efforts start with being able to measure processes and outcomes. With HIE, it will be possible to get actual clinical data with which to enhance patient-reported outcome measures (PROMs) and really make them more reliable. Another topic that can be better measured with HIE is provider practice pattern variation. For example, identifying which providers are "outliers" in the number of tests they order, and showing them where they stand compared to their peers, can motivate them to more carefully consider whether each test is needed. Fewer unnecessary tests means cost savings for the whole system, including patients.

Toward the end of the conference, Dr. Nakhle A. Tarazi gave a presentation on his Elliot M. Stone Intern Project on the impact of EHRs on patient experience and satisfaction. The results were quite interesting, including:

  • 59% of patients noticed no change in time spent with their provider.
  • 65% of patients noticed no change in eye contact with their provider.
  • 67% of patients noticed no change in wait time in the office.

The sample size was small, interviewing only 50 patients, but the results certainly warrant a larger, more in-depth study.

In Massachusetts, it seems like the state of the HIE is strong. The next year should be quite exciting. By this time in 2013, we should have a statewide HISP and a web portal service that enables exchange between providers. Halamka has promised that on October 15 the walls between Massachusetts health care orgs will begin to come down. If it is successful in Massachusetts, it could be a valuable model for other states. We also have the opportunity to involve patients in the process, and I hope organizations such as The Society for Participatory Medicine and Direct Trust will be involved in making patients active partners in the exchange of health data.

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February 05 2011

Report from Massachusetts Health IT forum

To talk of a "revolution" in health care would be demeaning to the
thousands of people staking their lives on real revolutions right now
in various countries, but there is no doubt that the conflation of
out-of-control health care costs, fancy new technologies, and various
government mandates (not only from the US government, but from many
states including Massachusetts) have forced doctors, vendors, and
other people in the heath care field to scramble and order changes
throughout their organizations. A couple hundred of these people came
to the "Tools
for Meaningful and Accountable Care" conference
held yesterday by
the Massachusetts Health Data

I didn't interview many participants (the ones I talked to were very
happy with the presentations) but I wonder whether all of them got
what they came for. They may well be haggling over questions such as
"How many prescriptions do we need to order online in 2011 in order to
qualify for the first stage of Meaningful Use booty?" or "How do I get
an image from the radiologist down the street while satisfying HIPAA
privacy regulations?" What they got, however, was a broad look at the
needs of health care and a set of projections by various speakers that
congealed into what I find to be a coherent vision for health care in
the future.

And I think the communication of this vision is important. Costs will
continue to rise and reform will fail if doctors, vendors, and IT
staffs simply race to meet each stage of regulations and act in an ad
hoc manner without an overall coordination of effort. Just how broad
this coordination of effort must be--we're not talking here just about
gathering an entire hospital around a program, or even a whole
consortium such as Partners HealthCare, the biggest Massachusetts
provider--will come out during this article.

Capitation versus Clinical Effectiveness Research

One of the big changes in the Massachusetts health care scene went
oddly unmentioned during the whole day of talks. I'm referring to the
from Blue Cross/Blue Shield of Massachusetts announcing that they
will change from fee-for-service to a "global payment plan." This
mirrors recent plans from the state government to pressure the health
care insurers and providers to pay for outcome rather than for
individual procedures. But imposed on the current delivery system,
such a "global payment plan" is just a repackaging of old-fashioned

Nobody seems to want to admit this, just as people are reluctant to
announce the return of "managed care" and prefer to assign the new,
as-yet untainted term "accountable care organization." It was up to
the CEO of a leading ACO--Dr. Craig Samitt of Dean Healthcare in
Wisconsin--to display a slide in his keynote with an equal sign
connecting "managed care" and "accountable care organization." He said
this moment is our chance to do managed care right.

(It's also sobering that in Massachusetts, world center for health
care, the two organizations singled out at this conference for their
achievements in bringing to life the potential in health care IT both
lay outside the state: Wisconsin's Dean Healthcare and central Texas's
Scott & White Health Plan. Furthermore, the individuals who
traveled here to describe their work had both spent long careers in
Massachusetts health care organizations before traveling elsewhere to
lead these advances.)

Payments for outcome and ACOs can work: they can lower costs while
simultaneously improving health care. But by themselves they're like a
meringue fashioned out of only sugar and cornstarch. The egg that will
make them work is clinical effectiveness research, a topic excellently
covered in talks by two doctors, Harold C. Sox and Michael Fischer.

CER is a medical application of the quality control routinely done in
other industries; it perhaps has its origin in time-and-motion
studies. It asks tough questions such as why one surgeon has far
greater success on the same patient population as another--not in
order to reward or punish, but to convey the best practices from one
clinic and region to another. CER should overcome the enormous
disparities that we all know exist between doctors, between hospitals,
between patient populations (such as differences in outcome by race)
and between different parts of the country.

Dr. Sox pointed out that CER was being tried as early as the 1960s,
but took a great leap in the mid-1990s and continues to make advances
despite such cynical political pot-shots as raising the fear of death
panels. (I highly recommend href="">Atul
Gawande's New Yorker article for a sweeping overview of the real
purpose and effect of end-of-life decisions.) CER is now formalized by
the Federal Government in several initiatives that are not likely to
go away.

Dr. Fischer said that CER required big changes in education and in
how results are delivered. Crude impressions like "death panels" have
to be fought with better outreach to the public. Continuing medical
education (which has impolitely referred to as "broken") needs to be
more hands-on and to demonstrate that doctors understand the material
they've been given. And EMRs have to become much more sophisticated at
delivering information.

Currently, doctors using EMRs are pelted with notorious "alerts" that
resemble the warnings web browsers give all of us when we visit web
sites with outdated security certificates. Most doctors treat the
alerts like web users treat the security dialog boxes--they ignore
them and click through. And that's because they're just too darned
many alerts. Every medication has some potential impact on something
(a rare food allergy, for instance) and the computer systems can't
figure out what doctors really need to know. Furthermore, if a system
displays an alert and the patient experiences a problem later, the
doctor's liability is increased. If a doctor dismisses an alert, he or
she had better type in a reason for doing so.

Making CER work will require vendors to design more flexible systems,
and the IT staff at each institution to choose the alerts that can
actually affect medical decisions. Some of the enforcement can also be
spread around: nurses and other staff can be involved in CER.

All Together Now

The value that comes from aggregating results of procedures and
treatments raises several questions. One is the effects on patient
privacy, because it's well-known that anonymized data can often be
de-anonymized, and we're talking here of widely shared data being
crunched by dozens or hundreds of organizations. (I'm on the planning
committee for an href="">upcoming conference on
health data privacy.) But a deeper question concerns the ability
of many forces to work together to make change.

A small medical practice can't internally collect enough data to
determine statistically what works and what doesn't. Unless someone
coordinates these small practices, they will fall behind and lose both
money and patients. But even a large institution has limited access to
data. Michael Lee, a director at the fairly large Atrius Health
group, said they wished they could see data on their patients after
they move on to other institutions. Better care and lower costs will
require massive coordination across the country.

The Direct
at Health and Human Services, which reached a major
milestone last week with the announcement of some successful data
transfers, should become a platform for such exchange and coordination
(and they're taking privacy quite seriously). But it's just a
platform--echoing a point made by Joel Vengco of GE--whose value
emerges only through the proper encoding, exchange, and interpretation
of data, followed ultimately by the dissemination of results and their
use by providers. (Whew.)

This is perhaps why Micky Tripathi, president of the Massachusetts
eHealth Collective, stressed that doctors have to move from just
entering data into their EHRs to entering accurate data, and using
structures that allow it to be parsed and crunched. It was also
pointed out that many of the requirements for receiving meaningful use
payments depend on multiple institutions: specialists, labs,
pharmacies, and other institutions the doctor deals with have to be
set up to send and receive the communications for which the government
rewards the individual doctor.

It used to be that doctors would practice and health care researchers
would do research (with some overlap, of course, at teaching hospitals
and major research centers). Practice and research are now
intertwining and perhaps merging.

All these ways in which health reform becomes a group effort show why
a high-level vision is important. And someone at the top must firmly
hold on to this vision. That's why I had a second surprise yesterday
at a news item that went unmentioned: the upcoming href="">departure
of David Blumenthal, National Coordinator for Health Information
Technology. I trust that the ONC is suffused with enough smart
people holding firm to their goals for it to continue to make change.
If Blumenthal's departure slows down implementation, though, maybe it
will give us a welcome breathing space to re-evaluate our tools and
what we need them to accomplish.

Too expensive, too hard to use, and too disruptive to workflow

That was the three-sided accusation delivered to vendors of EHRs by
Dr. Marylou Buyse, the chief medical director of Scott & White
Health Plan, who spoke at yesterday's conference and won an
achievement award there. Nobody blinked when she delivered the
judgment, and indeed it's one I've heard repeatedly. Dr. Buyse should
have added that their proprietary formats and imprecise
implementations of standards throw up enormous barriers to the data
exchange required for meaningful use, as I discussed in a href="">report
from last year's HIMSS conference.

Few speakers picked up this theme, perhaps because many vendors were
present, and perhaps because the speakers figured we had to soldier on
with whatever we had. My third surprise of the day, regarding
unmentioned news, was the alarming href="">
report by the President’s Council of Advisors on Science and
Technology expressing concern about the ability of current EHRs to
carry out the basic data exchanges required for improvements in health

Maybe health care in the US is so far behind the digital age that any
upgrade would produce benefits. Paul Grabscheid of InterSystems
reminded the audience of a recent study showing that two-thirds of
doctors still use fax machines to send medical records out, and the
next biggest medium in use is snail mail. Adoption of EHRs is rising
in this country (it may be up to 20%, depending on how it's counted)
but is still extremely inadequate. Nevertheless, most observers don't
call for moving full-speed ahead with existing computer systems and
workflows. Before making investments, it's important to be smart.

Better standards, as the PCAST report called for, are important, and open source systems would address interoperability. (I feel it justified to insert a plug here for the health care track at O'Reilly's Open Source convention. But most of all, we've all got to work together. Spent forces with nothing new to offer must be pushed out of the way, while the vast majority of people have to set aside maneuvers for short-term advantage and focus on a common goal. To return to the stirring words of keynoter Dr. Samitt, insurers and providers (and he could have added patients and politicians) have to "work together to drive change."

Maybe that's the key to any revolution.

November 11 2009

Converting to Electronic Health Records: fits and starts

The people of the United States are finally pulling together around the
goals of reducing health care costs (by far the highest per capita in
the world) and improving outcomes (we have the worst health of any
developed country). Everyone seems to recognize the critical
importance of data and communications in these efforts. So several of
us at O'Reilly Media, having been involved with information
technologies for some time, are tracking the issues that come up in
deploying computer technology in health care--not just to streamline
payments, not just to facilitate access by doctors to records, but
actually to create new ways to deliver and track health care.

I recently attended a forum on how my state, Massachusetts, is
facilitating the move to Electronic Health Records, a prerequisite for
many things doctors, patients, and insurance companies can do to
improve health. It's notable that the chief sponsor of the event, the

Massachusetts Health Data Consortium
was largely set up by insurance companies. Lots of invective has been
thrown at these companies recently, but the questions of technology
can pull together the insurers, providers, and patients in a common

My own understanding of the progress and frustrations in deploying
heath care technology was enhanced by the conversations I had that day
and the statistics bandied about.

Smallness is not nimble

Small doctors' offices went along with other industries and services
in the 1970s and 1980s by computerizing--but certain parts stayed in
the 1960s. So now, the big stumbling block that doctors face--adapting
their workflows to computerization--is reminiscent of the problems
other industries had in the 1970s and 1980s.

A typical scenario in those other industries was to use the waterfall
development model (or something even less structured) and setting
aside a requirements phase during which managers confidently told
application designers, "This is our workflow."

OK, requirements phase over and done with. The applications were
deployed, and it turned out that hundreds of little things the line
staff did every day were left out of the workflow. In other words, The
official workflow that the manager knew about was not rich and subtle
enough to encompass reality.

Doctors are more aware than those managers of how hard it is to
formalize their workflows, but the mismatch between current practice
and computer ideal is just as great. I can understand doctors'
reluctance to install electronic systems because in their work, more
than most, when one standardizes their data ands fit their
observations to the structure of the electronic record, lots can
easily get lost in translation. Not only is every patient and every
symptom a bit different, but every doctor is different in the manner
of observing patients and recording results.

It would seem, therefore, that the unique individuality of the
doctor--as well as the patient--would make digitization of records a
problem that was independent of the size of the provider's
organization. But still, some aspects of conversion are easily when
it's done on a large scale. Thus, speakers at the conference suggested
that the biggest barrier to adoption is the fragmentation of medical

According to the president of the Massachusetts eHealth Collaborative,
Micky Tripathi, 80% of US medical practices consist of just one or two
physicians, and small practices handle 90% of all outpatient visits.
Given the difficulties of electronic record conversion and the
reluctance of doctors to put in the effort, only 1% of these practices
currently use electronic health records.

I suppose that small practices may improve care the way small
restaurants cook more gourmet food, but the structure of medical
practices clearly reduces efficiency. But electronic records hold out
hope as well. Doctors can use computer technology to accommodate their
preference for small practices.

The division of the industry into tiny segments also increases the
risk of lost records (especially when they're on paper, but even
electronically). Forum speakers said the patient must ultimately be
the steward of his or her own records.

It's great when a new practitioner can start up an office tightly
oriented around electronic health records. Converting an existing
paper-based site is much harder. And I wonder whether EHR proponents
are willing face the cost (in time as much as money) of training.

Issues arise when large institutions adopt electronic records,
too. For instance, who gets control and the right to use the data, the
employer or the doctor who actually generates the data? As we'll see,
resolving questions about who benefits are critical to adoption.

Always somebody else's job

Tripathi made another impressive point: doctors don't see the benefit
to them in digitizing. In fact, they see it as benefiting everybody
else but them. I think this is because they don't know of any killer
app that would make the change not only desirable but indispensable.

This is the same reason Linux hasn't taken over on the desktop, even
though its applications and interfaces are quite easy to use and
highly functional. Linux can do everything Windows does--but for the
average computer user, it doesn't do anything more than
Windows does. After looking over the applications provided on a common
desktop distribution such as Ubuntu, one could well ask--why bother

In short, if a system just does the same thing as the one it's
replacing--even if it does that thing more efficiently and with fewer
errors--it won't generate enough excitement to drive adoption and make
adoption seem worth the pain.

The move to electronic records seems to have garnered support from the
leadership of all the important stakeholders: the medical profession
(as illustrated by the participation of the American College of
Physicians and Massachusetts Medical Society today), insurers,
governments, and patient advocates. But as I've mentioned, support in
the medical profession hasn't penetrated to the grassroots.

I wonder whether doctors could be swayed by stories of promising
apps--such as the one used by the Army's mCare Telehealth initiative
for Wounded Warriors suffering from Traumatic Brain Injury (TBI). As
described to me by Stuart Vaeth of Diversinet Corporation, which
created the mobile platform underlying the application, doctors can
use this little utility to remind soldiers to follow treatment plans.
Better health, fewer doctor visits, lower overhead--all in one small

Another expert I talked to claimed that wouldn't suffice. What doctors
need is to be offered an array of useful applications that are
guaranteed to work with the platforms they choose to install. This
suggests that standardization is even more important than is usually
thought, because it will create a platform for new applications. That
leads to my next point.

Government's role

Without speaking about current health care bills, I'll focus for a
moment on the medical part of the stimulus package, which suggest ways
government intervention can help fix health care.

First comes standard-setting. The most obvious role here is to promote
standards that ensure the different systems adopted by different
providers fit together. As reported by Ray Campbell, executive
director of the Massachusetts Health Data Consortium, the
Medicare/Medicaid part of the bill requires conformance to
requirements that will force conversion. God is still in the (yet to
be worked out) details concerning meaningful use.

Second comes actual investment. When up-front expenditures are high
and it takes years to recoup them, and especially when most sites are
small, somebody has to provide incentives. Campbell said the best
stimuli are actually up-front. In the case of the the American Recovery
and Reinvestment Act (ARRA) stimulus, the up-front stimuli aren't even
direct cash bonuses (which make up the bulk of the stimulus, but after
conversion is complete and judged to conform). Rather, the up-front
stimuli are research centers that provide expertise to sites that want
to digitize.

Although I am still holding back on commenting about the current
health care bills, I should reveal that I worked on grassroots efforts
to pass the 2006 Massachusetts health care bill that inspired
others to push for the current efforts by Obama, Pelosi, and Reid.
With all its problems, the Massachusetts bill put all of us on the
line in this state to work together to solve our health problems.

So instead of fearing a takeover of health care by government (it's
strange how Americans tend to view "government" as some homogeneous
monstrosity, like the mysterious obelisk in the movie 2001),
the public can view legislation as a way to stand together as a

The one thing of which I am convinced is that we need to replace the
current adversarial model of allocating health money with a
cooperative one. Only if providers and patients get lots of data, and
are willing to use it creatively, can we lower costs.

It worked with the energy utilities. Until recently, they operated
under a simple model where the more energy the sold, the more money
they made. Regulators and utilities worked together to find new models
that rewarded them more for conservation than for consumption. Health
care is a more complex problem--more levers and pulleys to the system,
and subjects who face a diversity of diagnoses--but with all that is
at stake, we should find a way forward.

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