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 IBM, Boca Raton, USA 2007

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 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) 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 clunky Wireless web access was in fetal development 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 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 HLHS s/p Stage 1

Now 4 months old s/p BDCPA

Next procedure 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 child with complex congenital heart disease gets sick on vacation? Do you bring a copy of his medical record with you?

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, CardioAccess™, 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 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

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 automatically We were able to remotely access data on demand in the most complex situations 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…” “great, I can’t remember the last time we lost one…” “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.


…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… 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 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: (20022005) 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”

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



100 Mortality Number





0 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. 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.

You can improve data accuracy
– –

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.

i-Rounds Family Edition Patient Access EMR

Providing patients with web based access to their medical record is a tremendous opportunity.
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 satisfaction We could not have predicted the pattern of use we have seen with our first version of the patient access record

Pattern of Utilization of Web Based Medical Record by Patients and Families: 2007

Logins by Month (Patient and Families Only)
160 140 Patient Photos 120 100 80 60 40 20 0 9/1/2006 10/1/2006 11/1/2006 12/1/2006 1/1/2007 Patient Care Instructions History and Physical Report Operative Images 0 50 100

Page Views
150 200 250 300 350 400 450 500

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 team. 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.

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