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A Quest to Improve

performance in
congenital heart
One medical team’s effort
to Achieve Information
Redmond P. Burke MD
Chief, Division of Cardiovascular Surgery
The Congenital Heart Institute
IBM, Boca Raton, USA
As physicians, we were painfully aware that we were not on the cutting edge.
We can instantly search 6 billion web pages, and find anything on earth…
….except your medical record.

I’m an uncompensated founder of a database company known as Cardioaccess™
I am an investor in Teges Inc. an Internet software manufacturing company…
I do get paid to perform congenital heart surgery.
My television career is on hold.
A little background: One out of every
800 babies is born with a heart defect.

We repair most
of these babies
in the first week
of life, when
their hearts are
smaller than
your thumb.
The Congenital Heart Institute at Miami
Children’s Hospital and Arnold Palmer

Over the past decade, we
merged two Florida cardiac
centers into a single
cardiovascular program
providing state of the art care,
and created an international
referral center for those
suffering from congenital heart
Ten years ago, we asked ourselves a crucial
question. Could we use Information Technology
to achieve a state of “information resonance”
within our medical teams, allowing each
caregiver to:

Capture and share data in real time
Access data on demand
Measure and report our clinical performance in
real time
Practice evidence based medicine (use data to
make decisions)
and test a critical hypothesis…
The Hypothesis
That by achieving this
state of information
resonance, we could
continually improve our
clinical performance.
When we began this effort to achieve
information resonance a decade ago, we
faced several challenges
• Technology
• Team Size
• Geography
• Time
• Accessibility
Web Technology was immature
Bandwidth was narrow
Data storage capacity was small
Web development tools were
Wireless web access was in fetal
You could not get smarter by
logging in to the Internet at a
Holiday Inn Express
We had to integrate massive volumes of data in diverse
formats from isolated islands of information.

Handwritten Notes
Digital Images
Reference Materials
Patient Monitors
Angiography and
We had a very large, and growing, team
We needed to stay connected with geographically remote patients and
team members
Cardiac team members travel frequently
Patients are referred to high volume centers from remote locations: Blue dots
represent patients.
We needed access to critical data minute by minute at the point of care,
and year by year over our patient’s lifetimes

Pediatric heart patients frequently require
multiple staged procedures over time

Newborn baby with Now 4 months Next procedure
HLHS s/p Stage 1 old s/p BDCPA in 3 years
We needed real time access to medical records to manage patients with
complex problems,
and the patients needed that access too.

What do you do when your Do you bring a copy of his
child with complex congenital medical record with you?
heart disease gets sick on
Fortunately, when I arrived in Miami in 1995 to start this
congenital heart program, we inherited a sophisticated network
based on the gold standard for medical information exchange:
How do you encourage technology innovation
and enhance adoption in a medical environment?
In 1996, we incorporated a
technology expert into the
cardiac team.
He got to know each team
member, and the types of data
they used.
We encouraged him to share
the team’s philosophy and
goals, and to push technology
to achieve them.
We didn’t let him operate, but he worked side by side with us from day one.
And we began a journey together.
We knew we wanted to measure our performance from day
one, so we initially built a PC based relational database,
and grew to hate it.
You couldn’t access it remotely
You had to enter all the data manually
Support was horrible
You had to be an expert to use it
It had no image storage capability
Updates took forever to develop and install
You had to install it on every computer you might use
Using strict medical terminology
…It sucked.
We thought a web based database would
address these deficiencies
The system could be accessed
anywhere, any time, with any web
enabled device.
The GUI could be designed to
decision making
Edward Tufte’s Principles
– Key clinical data at a glance.
– Picture superiority effect:
data is centered around
a daily patient image.
And we lucked out, thanks
to Al Gore and Silicon
Valley, the Internet and
web technology exploded.
By 2001, 40 percent of
physicians used the
Internet, and in 2002, this
increased to 78 percent.
Cimino JAMIA

These advances in web based technology allowed
us to invent “Internet Rounds”
Internet Rounds is a web based version of traditional forms of
medical information exchange
Teaching Rounds
Grand Rounds
Work Rounds
Card Rounds
Walk Rounds
Time of Day
Attending Rounds
Robotic Rounds
Internet rounds, sharing patient information over the WWW
Video of I-rounds login from a moving vehicle in the
mountains outside Tokyo, Japan in July, 2002.
Data was captured automatically or entered at the point of
Using progressive disclosure (Amazon/Yahoo) gave us rapid access to comprehensive
clinical information
By 2004, we were able to virtually round on our
patients in two cites at the same time. We could do
rounds right now.
Despite this unprecedented access to
information, we were still not exploiting the full
potential of our system.
We were able to capture clinical information
We were able to remotely access data on demand in
the most complex situations
But we were still making up answers to important
When a family asked: “What are your results for this
operation?” the response was something like:

“well, the published results
for this operation are…”
“the last time our fellows
looked that up…”
“great, I can’t remember the
last time we lost one…”
“as good as or better than
local competition…”
Our frustration with that lack of precision led us to
take a critical step.
We linked our electronic medical record (each patient’s legal medical record) to a
web based outcomes reporting platform, and made it visible to everyone.
This changed our performance assessment from an episodic, historical exercise, to a
transparent, continuous real-time evaluation tool.
…the technology enables us to base daily clinical decisions on
actual data.
A recent conference scenario -

A newborn baby presented with a complex defect, and one of the cardiologists
asked if we should do the traditional open surgery, or try a new interventional
We used our Web based research tool to retrieve the data on every one of our
patients who had undergone these procedures in the previous 4 years, and reviewed
our actual experience

When the decision was made, everyone
had confidence in the process.
Our web base information system now allows us to precisely
answer performance questions from families.

And ironically, it turns out that the
Federal government and other
payors for health care, increasingly
insist that medical teams do
exactly that, measure

Or they won’t pay you
Beyond helping us answer questions and make decisions, we really
wanted performance measurement to improve our outcomes.

If you told this swimmer his practice times a year after each practice, could he improve?

Every endeavor characterized by intense effort to achieve incremental improvements
over time depends on accurate, real time performance measurement.
Current outcomes reporting for medical care is a
combination of archeology and cryptography.
The Society of
Thoracic Surgeons
Database: (2002-
2005) Programs from
the USA and Canada
are Ranked by
The data is years old.
And it’s all a big

MCH secret identity: “BL”
We are trying to envision the Next Generation of Real Time
Performance Measures:
CUSUM Mortality: MCH 6/95-4/06

Mortality Number





0 500 1000 1500 2000 2500 3000 3500
Case Number

* :last case as of 4/20/06 4% mortality 2% mortality
This concept rapidly moved from
design to live, and four years ago,
we became the first medical team
to measure and report our
outcomes in real time on the Web.
Advantages of Real-time Performance
Measurement and Reporting

 You can motivate a team to improve
– Performance feedback is a powerful motivating force.
 You can create a foundation for evidence based decisions for your team, for
referring physicians, and for patients.
– Referrals can be based on results, not program volume or personal bias.
• You can improve data accuracy
– Yearly reports by Congenital Heart Programs may under-report mortality by as much as
20% BMJ
– Because these web based reports are always visible, they can be validated remotely by
patients, referring physicians and governing bodies.
We recently expanded our information network
to include our patients and families.

I-Rounds Family Edition: to our knowledge, the first Web
based electronic medical record for patients and families
allowing them access to their hospital data and images.
By including patients and families in our
medical information network, we can
leverage Metcalf’s Law
The power of an information network is proportional to the square of the number of
i-Rounds Family Edition
Patient Access EMR
Providing patients with web based access to
their medical record is a tremendous
Worldwide networks could develop between patients
with similar problems
Feedback from caregivers to patients could be used to
improve compliance with treatment plans (did you
take your medicine today?)
Feedback from patients to caregivers could be used to
improve team performance and increase patient
We could not have predicted the pattern of use we
have seen with our first version of the patient access
Pattern of Utilization of Web Based Medical
Record by Patients and Families: 2007

Logins by Month (Patient and Families Only) Page Views

160 0 50 100 150 200 250 300 350 400 450 500

Patient Photos

Operative Images

History and Physical
40 Report


Patient Care Instructions
9/1/2006 10/1/2006 11/1/2006 12/1/2006 1/1/2007

28 Families have now been signed up and have generated over
a thousand page views in 4 months.
A web based information management system has
been developed for a multi-disciplinary medical
The system was rapidly and widely adopted by
our team, and is now available to our patients and
their families.
Real time medical performance measurement can
be achieved now, and has been our standard
practice for the past four years.