Report: 9/11 Medical Researcher's Data-Gathering Efforts FlawedBy John McCormick Print
An echo of other high-profile data problems—lack of resources, need to move quickly, contributed to woes.
The data collection efforts of a New York clinic that conducted some of the leading research on the health of 9/11 recovery workers are in question on the eve of the sixth anniversary of the World Trade Center terrorist attacks.
The clinic, which is housed at Mount Sinai Medical Center, did not have the initial resources, or the time, to adequately gather in-depth medical information on rescue workers, according to an article in Friday's New York Times.
The paper said the staff of the Irving J. Selikoff Center for Occupational and Environmental Medicine started collecting data just days after the World Trade Center collapse because they knew that such research would be needed to track the symptoms of ground zero dust exposure.
The article noted that the federal government did provide the clinic with money for worker examinations in the months after the attacks, but did not fund the center's research and analysis efforts until 2004. The newspaper called the center's immediate actions "well meaning, even heroic," but found fault with a number of its data-collection practices.
Among the problems:
- The initial questionnaire used to record medical histories was a whopping 74 pages long and filled with vague questions.
- Some of the information collected was stored in boxes and was extremely difficult to sort through.
- The clinic did not have important baseline information, such as how many people worked at the World Trade Center site and for how long, because such data was unavailable.
An Echo of Other Data Problems
Questionable data management practices are nothing new-and can often have big implications.
In the last few years, state and federal investigators uncovered paperwork and procedural problems at Kaiser Permanente that led the healthcare organization to shut down a kidney transplant facility (see Baseline's May 2007 cover story about Kaiser, "We Really Did Screw Up").
And, in one of the best known cases of data misstep, Hershey Foods failed to fill retailers' candy orders during the 1999 Halloween season because the company hadn't entered into its SAP enterprise software system all the locations where chocolate bars and licorice were warehoused. A subsequent SAP initiative fared better ("Hershey's Sweet Victory," Baseline December 2002). "Practically everyday you're seeing these things," said Tom Redman, president of Navesink, a data quality consultancy.
Most organizations don't have the proper procedures in place to accurately collect and store data, said Larry English, president of Information Impact, a consulting company that specializes in data quality. As a result, English said, companies often work with out-of-date information and must deal with inconsistencies across databases.
It's not a question of technology, said Rob Karel, an analyst at Forrester Research. Good data handling comes down to companies taking ownership of their data stores and putting the proper work rules in place to manage it.
But both English and Karel said the Selikoff Center case is slightly different than most simply because the clinic rushed in to plug a hole that desperately needed to be filled.
Baseline contacted Mount Sinai late last week and was told someone would be made available to comment and answer follow-up questions. But as of this morning the medical center had not provided any additional information.
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