A Quest to Improve

performance in
congenital heart
surgery:
One medical team’s effort
to Achieve Information
Resonance
Redmond P. Burke MD
Chief, Division of Cardiovascular Surgery
The Congenital Heart Institute
Miami Children’s Hospital
Arnold Palmer Hospital
2008
 We are a product of our
environment

I was born in Honolulu, Hawaii

I grew up in Cupertino, California
 From that perspective, we were not on the cutting edge.
We could instantly search billions of web pages, and find anything on earth…
….except a medical record.
 Disclaimers
I’m an uncompensated founder of a database company known as Cardioaccess™
I’m on the Board of Directors for Teges Inc. an Internet software manufacturing
company
I get paid to perform congenital heart surgery.
My television career is on hold.
“Reality TV” is pretty unreal
A little background: One out of every
800 babies is born with a heart defect.

This newborn
has HLHS, a
fatal lesion in
most of the
world.
Successful
treatment
requires a
synchronized
team.
 The Congenital Heart Institute at Miami
Children’s Hospital and Arnold Palmer
Hospital

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
disease.
 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)
Our 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 enormous challenges
• Technology
• Team Size
• Geography
• Time
• Accessibility
• Transparency
• Bias
• Evolution
We had to integrate massive volumes of data in diverse
formats from isolated islands of information.

Handwritten Notes
Teleconferencing
E-mail
Digital Images
Reference Materials
Databases
Patient Monitors
Angiography and
Echocardiography
Studies
MRI
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
vacation?
 And we needed to achieve
Transparency
The federal government has mandated
that we achieve a new level of
transparency in medicine
– Make outcomes visible to patients
– Make cost visible to patients
– Make electronic medical records available to
patients
We needed to eliminate Bias
We suffer from many forms of obiasity
Our decision making conferences are
plagued by bias
– Anecdotes
– Repeating mistakes of the past
– Dominant personalities
The treatment for obiasity is data
Our profession evolves rapidly
Stage 1 Palliation:
– Circulatory arrest Philly
– Sano Procedure Tokyo
– Continuous Cerebral
Perfusion Canada
– Hybrid Ohio
Current evaluation and
communication strategies take
years
Research is time consuming
and inefficient, ever look for
old charts?
Technology, treatment
techniques, personnel and
infrastructure can change
overnight
Hybrid Stage 1: PDA Stent
 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:
 The solution:
“Business at the Speed of Thought”
Bill Gates
 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 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
enhance
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
Rounds
Attending Rounds
Telemedicine
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
care.
Using progressive disclosure (Amazon/Yahoo) gave us rapid access to comprehensive
clinical information
The Picture Superiority Effect
The arc of recovery is conveyed in a
visual way.
 By 2004, we were able to virtually round on our
patients in two cites at the same time. We could do
rounds right now.

https://irounds.orhs.org https://irounds.mch.com
Data on Demand
Our IT strategy has addressed several of the
challenges:

We were able to capture comprehensive clinical

information automatically
We were able to remotely access data on demand
We got rid of the index cards
But we were still making up answers to important
questions…
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…”
“as good as or better than
Boston/Philadelphia/the
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.

http://www.pediatricheartsurgery.com
…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
procedure…
Normally bias would take over here
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
https://irounds.mch.com

Data effectively reduces bias

 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
performance…

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
Mortality.
The data is years old.
And it’s all a big
secret.

MCH secret identity: “BL”

Bad things happen when you try to
hide outcomes.

The Bristol
Inquiry: 150 brain
damaged and 29
dead children
after congenital
heart surgery
Conclusion: It is
right and good to
publicly report
medical
outcomes
 We measure and report our
outcomes in real time on the Web.

www.pediatricheartsurgery.com
 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.
www.pediatricheartsurgery.com
 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
users.
Pattern of Utilization of Web Based Medical
Record by Patients and Families: 2008

Nobody would have guessed this, except you.

Providing patients with web based access to
their medical record is a tremendous
opportunity.
Worldwide networks could develop between
patients with similar problems
– Think Facebook for Medicine
Feedback from patients to caregivers could be
used to improve team performance
– Think Amazon for Medicine