Tag Archives: health IT
Why can’t (the information) all just get along?

Why can’t (the information) all just get along?

Dear Eve,

Mommy went out of town for a quick trip for work this week.  But it was a trip for you too….and for the thousands of children in our country, like you, who have to spend alot of time seeing doctors to help you be healthy.  Your doctors need to share important information about you, not just sometimes, but ALL the time.  Right now, they don’t do that.  Sometimes they don’t want to.  Sometimes, they can’t. Either way, this is bad for you. Mommy and daddy want to help make things better. So do alot of other very smart people.  We need to keep at it until we can get – right when we need it – all the information about your health, your medicines, the pictures of your heart, or your head.  We don’t want to spend hours on the phone trying to get those things (this is time we would rather spend playing with you).  We don’t want to make our own bootleg recordings of your echocardiograms or your MRIs, just so another doctor can see them (we would rather make videos of you dancing).  We don’t want to figure out how to get that information SENT to other doctors or therapists trying to make you feel better (we would like someone, anyone, with a title other than mom or dad to do this).  We don’t want you to wait – not weeks, days, hours, even minutes, for the care you need.  We will not stop until these things are fixed (someday mommy will make you a board game with the funny game pieces like DICOM, Direct, HL7, EHR, BlueButton, MU and HIPAA – and all the pieces will work together).  We do not need to invent anything new.  The smart people have already invented the stuff that makes this all possible.  Now, it’s due time everyone charged with giving you the health and life you deserve stop talking about it and start doing it.

Mommy

Health information sharing.

Health information sharing.

Last week’s study published in the New England Journal of Medicine proclaiming patients taking azithromycin (Z-Pack) had an increased risk of cardiovascular death gave me goosebumps.  Again.  Not because I have a father with heart disease and 2 replaced valves.  Not because I have a 3-year-old daughter with Congenital Heart Disease.  But because it reminded me, yet again, that relevant health information is rarely collated into one place and shared effectively to protect the patient.

When my daughter, Eve, was not yet one month old, we were given “training” on how/when to administer our baby’s cocktail of 8 medications. These were the drugs that were keeping her heart beating. Period. No pressure.  Among the 8 meds, was a drug called Digoxin.  It’s a widely used medication for heart conditions – in adults and children – and essentially improves the pumping function of the heart.  But it is also technically incompatible with certain types of heart arrhythmia, and particularly with electrical pathway issues.

If not for a diligent pharmacist, we may have been sent home with a baby with CHD and an undiagnosed case of Wolf-Parkinson-White Syndrome.  Wolff-Parkinson-White syndrome is a heart condition in which there is an extra electrical pathway (circuit) in the heart. The condition can lead to very rapid heart rate, called supraventricular tachycardia (SVT).  In our daughter’s case, it was 250-300 beats per minute.  “Like a hummingbird” our pediatric cardiologist used to say.  Question is: why wasn’t this immediately apparent to every one Eve’s care team?  Why did we just get lucky?

This nearly-adverse event because one of the core elements of change I was committed to working on in health IT. The infrastructure is there. The capacity is there. The need is there. Why can’t these systems just TALK to each other??  My mom used to call it the “knitting circle”…in our small hometown, everybody knew everything.  In real time. 30 years ago.

The new report on Zithromax (or Z-Pack as it’s fondly known) was just another of a thousand case examples where health IT should be solving a problem.

In full disclosure, I love the Z-Pack.  We’re fortunate in that our kids don’t get infections often, but when they do, the other stuff just never works.  Z-Pack does.  And it’s a short course.  Easier to take, easier to complete.  I can think of one instance where all three of the children had nasty cases of some upper respiratory infection.  The pediatrician prescribed Z-Packs.  It was smooth sailing for our older two, but Eve (then 20 months) would not touch it.  We could not get a drop into her, without being charged with some sort of child abuse.  We let it go.  It took her longer to recover, but eventually she did.

Clearly our pediatrician is aware of Eve’s heart condition.  But would she have been aware of the potential issues with azithromycin relative to heart arrhythmias and accessory pathways?  Apparently, there has been an awesome little tool our there for years to help electrophysiologists make antibiotic choices in patients with Long QT syndrome or in those who take other antiarrhythmic drugs.  There’s even the Arizona CERT QTDrugs.org website. But primary care physicians having unfettered access to details that specialists may have at the top of their newsfeed? Well, that’s just not reality. Most of us just hope that an integrated care team is reality.

But those of us who BELIEVE in the power of health IT understand it DOES reduce disparities and improve outcomes. It allows that team, however loosely structured, to actually communicate, exchange health information and share critical data.  It reduces the risk of the wrong prescription. The the wrong diagnosis. The wrong care management.  It’s not just a virtual “red flag” – it’s the knitting circle that both care providers and patients desperately need.