Cancer registry cock up in Maryland

by revere, cross-posted at Effect Measure

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.