What is a Health Registry?

Before Adventures of a Funky Heart! began I took part in Lobby Day 2007, sponsored by the Adult Congenital Heart Association (ACHA). This was my very first Congenital Heart Defect (CHD) Advocacy effort, traveling to Washington DC to meet with other adult CHD Survivors and to lobby Congress for the passage of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on paper.

So ACHA members (along with a few other CHD Advocacy groups who have joined the fight) keep pounding the pavement in Washington, doing the grunt work needed to obtain funding for the Congenital Heart Futures Act and the registry it contains. But even though we’ve been doing this for nearly four years, the question is often asked: What exactly is a registry? And I’ve even gotten some strange comments, such as the person who insisted that they were not going to turn over their personal information, no matter what. So let’s try to clear up some misconceptions.

A Health Registry can best be described as an Excel spreadsheet: a database of facts and numbers. Fill the sheet with data, apply the correct sorting formulas, and you can learn a lot of information. Obviously, the more data you have, the bigger the pool of information you have to make the calculations and the more accurate they are. (My favorite college football team, for example, has won two games this year and lost none. That limited information points to a undefeated season and a National Championship. Even though I am pretty certain that won’t happen, that’s what the statistics predict.)

No one has to give any identifying information to be part of the registry. That would make it nearly impossible to keep track of anyone, especially women; ladies tend to take the last name of their husband when they marry. I’m not who I say I am either – most of you know me as Steve, but that’s not my legal name. I don’t sign an official document with Steve and it is not the name on my ID or my credit card. You could overreact and have a separate entry for every variation of a name, but that would give you too much information and dilute the results. It would be much easier to give everyone who is eligible to enter information into the registry a code number that will follow them for their lifetime.

The registry would be limited to adults at first. Why? it doesn’t sound fair, but we’ve been there and done that – what better group to use to get results right away. We’ve been through the childhood surgeries, the medications (some of which don’t exist anymore, because we proved they don’t work) and we’ve made it. Get the data from a couple of hundred adult CHD survivors into the registry, and you can begin to see some preliminary trends. And each addition makes the data more accurate.

So once we have this registry up and running, what can we learn? All kinds of useful information! The Centers for Disease Control (CDC) currently produces a work known as the Atlas of Heart Disease Hospitalizations Among Medicare Beneficiaries. This is a good example of a Health Registry, and the data is overwhelming. You can order a printed copy, download it as a .pdf file, and even view a series of interactive maps. (If you look up the South Carolina map, you’ll find that White men aged 65 or older with Heart Failure were hospitalized most often in the Northeastern part of the state – the border counties from Chesterfield County to Horry County. Data that detailed is priceless.)

What else could it tell us? Dr. Wes recently published results gleaned from an ICD Registry. Click the link and read what the registry revealed – the amount of information is staggering. Even though the plan is to gather information from adults with a heart defect at first, the registry is not exclusive and will benefit the entire CHD Community.

Where’s ours?!?

There is a new publication produced by the Centers for Disease Control (CDC) named The Atlas of Heart Disease Hospitalizations among Medicare Benificiaries. It is available from them in printed form (They say it is available but it is not listed – they could be out at the moment); as a downloadable PDF file; or even as a group of interactive maps.

This is really cool stuff, and leads to the question… Where’s ours? Where’s the Congenital Heart Defect (CHD) statistics?

There are some CHD statistics, but the massive amounts of data needed to compile something like The Atlas for CHDs just isn’t available. It’s too spread out – these records live in medical files in places like Johns Hopkins Hospital, The Mayo Clinic, Denver Children’s Hospital… and the list goes on and on. Some of those records even hide in the files of a small community hospital, the only facility  in the hometown of a newborn.

Even though we are working for the Congenital Heart Futures Act and the Registry that the legislation will create, change won’t happen overnight. The actual database has to be created first – a database that can handle approximately 40,000 new entries per year with numerous variables. And once created, such a database will be empty – will designers choose to include records that previously exist? I’d guess yes, but no one will be assigned to cull the records from America’s hospitals and doctors offices. There are just too many. What would probably happen is that the system would “go live” on a certain date and everyone who reports a CHD birth after that date, the information would be entered. At their next appointment with their Cardiologist, CHDers will be asked if they would consent for their records to be entered in the database. Hopefully most of us would say yes.

It would be a few years before there was enough data to study, but once that occurs, I’m hopeful there would be a lot of research done.

If I had Heart Surgery, then I can deal with Congress!

If you live in the Washington, DC area (or can take a few days off and travel to DC), plan to Join the Adult Congenital Heart Association as we lobby Congress!

In 2007 we lobbied for the National Registry of CHD patients, and while we won the battle, we lost the war. The Registry initiative was included in the Federal Budget, but the political process delayed passage of the budget. When it finally was passed, the budget was “stripped” – in other words, many extra spending initiatives, including the registry, were dropped.

Lobby Day is scheduled for February 10, 2009, and if you can attend, we would love to have you. We especially need ACHDer’s who feel comfortable telling their story… even to someone you may see on the national news each night. And since appointments with Congressional staff almost always last 15 minutes or less, the quicker you can “cut to the point” the better! Congress is a strange beast: it can move painfully slow as a group, but individual meetings occur at a rapid pace.

If you do get to come, the following tips should come in handy:

Bring a good suit or dress, and gentlemen, don’t forget the tie. Business attire is standard dress for Congressional offices.

Bring a pair of good, comfortable shoes. You may be familiar with the size of the Capitol, but what you may not know is that all of the legislator’s offices are located in seven office buildings that surround the Capitol building. All of the buildings are connected by a system of tunnels, so while you won’t have to venture outside, there will be a lot of walking involved.

Don’t be disappointed if you don’t actually meet with your favorite legislator. A member of the staff familiar with the subject being discussed often takes the meeting and reports to his/her superior.

Getting to your hotel should be easy if you select a hotel near a Metro stop. Reagan National Airport has a Metro stop located a short walk from the baggage claim area.

When we lobby in 2009, we’ll be teamed up with other Congenital Heart Defect groups. Legislators and their staffers have come to expect visits from various heart related groups around Valentine’s Day: It’s a natural day to choose. When we lobbied in 2007, I met several people from other heart groups who were lobbying for their cause, too. It seems a bit “scattershot”, with five or six heart groups walking the halls, each one lobbying for their own cause. So in 2009 the ACHA is going to join forces with several other heart groups and lobby together. The more constituents you can put together the more Congress will respond, so joining together can only help each group.

So listen up Congress… We’re back!

Just too Stubborn!

I met a young lady named Rose at the Adult Congenital Heart Association convention a few months ago. Rose has Hypoplastic Left Heart Syndrome, or HLHS for short. As I mentioned in a previous post, HLHS is a killer. Left untreated, the mortality rate of HLHS is 100%. But the invention of the Norwood Procedure in the mid 1980’s led to the three stage surgical treatment that gave HLHS kids a shot at life.

Rose is 23, and is part of the first generation of HLHS survivors. In almost any field, you study previous results to predict future outcomes. Not so with Rose, the number of HLHS survivors older than her is too few to even make an educated guess. What does the future hold for her? No one can say. Like Hillary climbing Everest, no one’s been here before.

A while back I took a deep breath and asked my Cardiologist The Question: “How long do you think I’ll live?” She shook her head and said “We’re off the page right now… but you are doing well, and I don’t see any reason why you can’t have a full life.”

That is why the ACHA’s initiative to create a Federal Adult CHD Registry is so important. All of us Adult CHDer’s have done something right to keep us around this long… what is it? Let’s compile the numbers, study them, and find out what it is. Maybe it is a certain combination of medications, genetic makeup, exercise, any number of factors. Perhaps it is advancing medical technology — the later you are born, the better the odds of long term survival. Perhaps the main reason is that we’re all just stubborn as hell.

Rose isn’t planning to go anywhere, either. You see, I didn’t just meet her… I met her fiance´, too!