Cancer registry cock up in Maryland

The Health Care Renewal blog has made a business of chronicling the undreside of the American health care system: fraud, conflicts of interest by respected academics, bureaucratic incompetence and malfeasance. I do basic research and don't get involved in health care delivery so I only refer to them occasionally, but it's a terrific resource -- if you like that kind of thing. Last week, however, they hit pretty close to home. Not literally, but professionally. I'm a cancer epidemiologist and in a long career have made frequent use of state cancer registries. If you don't know what a cancer registry is, it is a state-based unit that collects information on all diagnoses of cancer made in a state. Data is usually supplied by clinical laboratories and hospitals. States with registries (and I think all have them now, pursuant to a law from a few years ago) in effect make cancer a legally reportable disease. They are enormously valuable for people like me and they also provide a running check on what kind of cancer is appearing and where the person lives. Keeping track of this and making sure the record is as complete and accurate as possible is vitally important for public health and additionally for researchers (like me). It's a public function that provides a common good, like other kinds of viral records. So I was shocked to learn via Health Care Renewal that Maryland, home state of Johns Hopkins, had outsourced their cancer registry to a privately held for-profit company -- with predictable results. This from a Baltimore Sun article linked there:

A state contractor tampered with Maryland's cancer registry, a database used by researchers to track the disease's impact, counting hundreds of patients as having cancer when they did not, according to a legislative audit released yesterday.

The company, Macro International Inc., found in an internal investigation that data were deliberately altered between August 2004 and December of that year. The company fired the employee responsible for the cancer registry. State officials said that Macro employees apparently overreported the incidence of cancer to ensure that the database met standards set by a national certification association, which closely monitors registries to ensure that states have a complete count of cases.

The misinformation led researchers to send an estimated 400 women letters beginning in 2005 asking them to participate in a cervical cancer study when they did not have the disease. About 10 of those women called the state Family Health Administration, part of the state's Department of Health and Mental Hygiene - one of the first indications that the cancer registry was inaccurate.

The database is often used by public health officials interested in cancer prevention and by epidemiologists who look for correlations between cases and environmental, lifestyle and other factors in an effort to find potential causes.(Laura Smitherman, Baltimore Sun)

The data tampering was said to be deliberate and methodical, involving almost 13% of all cases in 2002. It's what happens when you privatize public functions. And while it's just what we have come to expect from Republicans, this one gets laid at the doorstep of the Democrats. Maryland had a Democratic Governor (Parris Glendening) when this happened.

This may not shock you as much as it shocks me. Put that down to what I do for a living. The cancer registry in our state is excellent and so are the state employees who run it. They are very competent and dedicated to their public health mission. I can't do better than to quote the last line of the Health Care Renewal post by Roy Poses:

To take back the future of health care, we will have to ensure that health care is carried out by people and organizations pledged to uphold its core values, and working transparently and accountably under explicit and enforceable codes of ethics.

This is atrocious.

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Maybe I am missing something, but what possible benefit could this company have had for falsifying the database? Or was this a case of a lone fuck-up employee with no oversight?

Em: The national certifying body can make good estimates as to how many cancers are expected in an area and if there is a big disparity they look to see if there is underascertainment and why. The motive in this case was to pad the numbers so it met expectations and the contract wouldn't be threatened by their performance.

Ah, I see. Thanks for the clarification.

Viral records?

That had to be a slip of the finger..,

Although, virii do play a role in a lot of cancer.

But if it was a computer database, maybe another kind of "virus" was involved.

This coincides nicely with recent news that insurance companies want to tap patient records to see what prescriptions they purchase. Pay for your antidepressants with a credit card and the insurance company you'd like to buy into will nix you because you are already sick.

So say some private contracting company plays games with the records of everybody in one zip code, just for example. I'm sure they'd have some good reason for doing so. Now everybody in your neighborhood gets denied health insurance the next time they try to buy some.

Nice.

By wenchacha (not verified) on 05 Aug 2008 #permalink

Where's that troll, Kruger, to remind us (at length) that the private sector always does things better?

Macro is a very mixed bag and I wouldn't trust their accounting. I've worked with some very competent people there and some real slime. They are notorious for overbooking people's time. A highly credentialed person will get billed for about 150% of their time and obviously not be contributing that much to projects. they constantly re-assign things and you're like to get someone completely out of their depth as the contact. Still, they keep getting work...

Rich--

On politics and economics I agree with MRK about 0% of the time. But he ain't no hit-and-run troll. He's here fighting his corner (at length) every day.

Shoulda been ',granted' within the parentheses after 'length'.

I must admit I'm baffled here. If hospitals and labs supply the raw data, then the contractor just enters and maintains the data and the d/b itself. I see no reason to manipulate the data by the contractor unless the contractor is supposed to audit hospitals and labs to insure that data is being collected and forwarded which they may have failed to do. That being said, because the count was manipulated in such a way as to suggest there is/was more incidence of cancer is this national certifying body going to investigate why there is less incidences of cancer? I mean its one thing to scrutinize the count data but quite another to account for the reason(s) that there is less incidence of a partiticular cancer then what is expected. For some reason less incidences of cancer sounds like a good thing to me but I also know that in this day and age a good thing is highly suspicious and shouldn't be relied on.

By pauls lane (not verified) on 05 Aug 2008 #permalink

This is the obvious result of bureaucracies taking control of something that it outside their realm. Surely, the company hired had connections to Annapolis, or put forth the lowest bid to do the job. It's politics that is the problem here, more so than unethical behavior. Take the politics out of this, and everything would have been fine.

pauls, ren: Counting cancers is difficult. It isn't just notification but coding and making sure the required sources (pathology labs, hospitals and whoever else is required under the law) is doing it, doing it right and doing it in a timely way is a real task. Think of all the path labs there are. How do you know they are submitting and what they are submitting is what you need? You have to check, do call backs, etc. I don't know all the logistical details except to say I know it is very staff intensive. There are established ways to check on the ascertainment completeness of registries and if you are doing a lousy job it is visible. It's not just a matter of making an expected number (although I portrayed it that way, so I can see why you are puzzled).

Ren; It's not a bureaucracy problem as far as I can see, but it is politics. The politics here involved privatizing a public function.

Hey Rich, here is a news flash for both you and Revere. It was a states function to do this and the Republicans had nothing to do with it. It was outsourced by the state as Revere states. A very Democrat state and personally I dont like being associated with the word troll when a fuck up occurs or being blamed for a privatization. Sounds to me like the guy had someone trying to put something into his pocket and that there was not any oversight at all.

Typical of a lefty to make that statement when something gets screwed up. Your assertion would be I assume that GOVERNMENT could do better? Yeah right. All it does is creates another bureacracy that is bulletproof, unremovable and above all unfundable. This guy definitely fucked up and I think those people should sue that endured the process....

They are guaranteed a huge settlement because of the trial lawyers that love Democrats...Especially in MD.

I worry about someone who thinks that socialism and communism are two different things... UHC is just one start at that. Revere is cool with the fact that we agree to disagree. Perhaps you should also just make your points and let them go?

Privatization of a public function is generally a decision thats made to keep costs down. It is/was done improperly and someone is going to get their butts into a sling. Lets start at Federal and see if they had sent any of this stuff through the mails. Mail Fraud for starts... five years, plus counts. Then fraud with intent is a states charge and thats another five to ten in most states, plus counts. Conspiracy Fed and state... thats generally 8 years for both. But you know, there are no guarantees that it wouldnt happen if the State had responsibility here Revere even though they are the fall back for the money. Oooooh I would be ambulance chasing this one and prove intent and conspiracy and see how far it went. I would LOVE to be in on this if and when the indictments come out.

You got it part right Revere. This person is in deep doo doo and I bet he/she arent bright enough to only implicate themselves. I bet there is a page two coming on this... Keep me posted.

Slove-Too kind old son. I think the world needs to get a huge dose of respect for each other to start and that should be delivered daily. I start with the word American first and then everything falls in behind it.

By M. Randolph Kruger (not verified) on 05 Aug 2008 #permalink

Randy: Yes, that is my assertion. Government does do better in cancer registries all over. I didn't blame it on Republicans, I blamed in on a Democrat. Maryland has had Republican governors, though. Remember Spiro Agnew? Privatization doesn't keep costs down. It only takes my money and puts in some fat cat's pocket.

Said fat cat Democrats here put their big boy brothers to work and held 49% under the privatization of the local health care..... You might have seen the guy on TV. John Ford, 880,000 and convicted by a jury in under an hour. Did I mention the 80,000 Rolex from a developer. Government for sale by all quadrants Revere.

Politico's

Like I said we might just have to kill them all.

By M. Randolph Kruger (not verified) on 06 Aug 2008 #permalink

Randy: I have no idea what your comment was about, but let me be clear. I am not in favor of privatizing public functions. I don't care if it is done by Republicans or Democrats and I think Harold Ford, a Democrat in your state, is a first class asshole and I have no respect for him. We need less Democrats like him. And your pal Bill Frist's family has made a fortune off sick people and screwing the government and the non profit hospital system.

Yeah Revere, but its legal and instead of that private healthcare system we would get to have every bozo on the street paid for by someone other than themselves. The all encompasssing government. 2/3rds of this country would never pay under UHC and therefore would be more screwed up than it is now.

And you are right Harold Ford Jr. IS an asshole.... pays 20 bucks for "lunch" and picks up and delivers in school buses on election days.

By M. Randolph Kruger (not verified) on 06 Aug 2008 #permalink

Nice to see ya' randy. Too bad, you know zilch about Macro or Cancer registry. All the verbal diahrrea in the world can't overcome that.

Revere--don't feed the trolls,esp. when they go on a Harold Ford rampage.