If you want to examine a Missouri hospital's infection rates before last year, don't bother looking for the information on the state health department's website or requesting a copy of the government records.
State health officials have deleted the data. And no electronic or paper records of the older information are available.
The deleted material, collected from 2005 through 2008, is too costly to maintain and too sensitive for the public to review for more than a year, state officials say.
Without access to infection data from previous years, consumers won't be able to adequately assess a hospital's performance in preventing infections, consumer advocates say. Specifically, the policy of the Department of Health and Senior Services makes it difficult to review how hospitals have performed over time and whether they perform consistently above or below the national average.
"In the age of the Internet, there's no excuse for that," said Lisa McGiffert, director of Consumers Union's national Safe Patient Project. "The old reports should remain, and they should be marked by date."
Infections associated with health care kill nearly 100,000 people in the U.S. each year and cost the health system up to $45 billion, according to the federal Centers for Disease Control and Prevention.
Six years ago, Missouri was among the first states in the nation to pass legislation that required hospitals to reveal their annual infection rates for certain surgeries and intensive care units. The law — known as the Missouri Nosocomial Infection Control Act of 2004 — was lauded at the time for its potential to protect the public. Its implementation, however, has been less than progressive, the two Republicans who sponsored the original bills say.
"It's pretty sad to me that the (health) department can't give you a trend to show that a hospital is getting better or worse. It shows that the department doesn't really care," said Rep. Rob Schaaf, R-St. Joseph, a family-practice physician who pushed the infection bill in the Legislature.
Schaaf and former Sen. Sarah Steelman, an economist from Rolla who sponsored the bill in the Senate, said they don't recall any discussions with state officials about deleting the data.
"I'm surprised at the agency," Steelman said. "The job of the health department is to protect people. It makes no sense at all to eliminate data after one year."
Since 2006, the state health department has used an interactive website to present hospital infection data in the form of numerical tables and graphics. At the end of each quarter, the oldest quarter of data is purged as the latest quarter of data is added. So far, no data for 2010 have been posted.
State health officials acknowledge that if infection data from previous years are available for comparison, consumers could draw more meaningful conclusions. Even so, they say, the health department will continue to delete the hospital infection data.
"Given our skimpy resources, we're pretty much doing what the law tells us to do," said Mark Van Tuinen, a state data manager.
no 'old data'
The statute doesn't include language authorizing the health agency to delete hospital infection data or the numerical tables and findings officials generate from the data. Instead, the law says the records must be retained for monitoring hospital performance.
The statute says: "The data collected or published shall be available to the department for purposes of licensing hospitals and ambulatory surgical centers."
But when the Post-Dispatch on July 14 requested the infection data from previous years, a spokesman for the health department said it no longer exists.
"It's considered data that only applies narrowly to the statute and can only be made public on a 12-month, rolling basis," said Kit Wagar, the spokesman. "We don't keep the old data."
A few days later, Van Tuinen said the information wasn't destroyed and could be retrieved.
"We have it," he said. "It just isn't handy."
About one week later, Wagar said the department would take requests from the public for the information, but the requests would be handled only if a programmer was available and only if the party requesting the information paid the costs of retrieving the information — even though the information had been previously available at no charge.
The state policy to erase past years' infection data was first spelled out by former Health Director Jane Drummond in a 2006 report to the governor and members of the Legislature: "As each new quarter of (hospital infection) data become available, the earliest quarter will be deleted and the latest quarter is added to form the most current 12 months of data for viewing."
"I honestly do not remember how that decision was made," Drummond said recently from her law office in Jefferson City. "This would not be a unilateral decision on my part. I had discussions about this but can't recall the specifics."
The policy has been continued under the agency's current health director, Margaret Donnelly. She declined to comment.
Under the 2004 law, the state health director sends the governor and Legislature an annual report on hospital infections. But the reports provide only a summary of the year's infection data, not specific comparisons of hospitals' infection rates.
The statute also orders the agency to "develop and disseminate to the public reports based on data compiled for a period of twelve months" for each hospital and ambulatory surgical center, and to update the reports quarterly. It says nothing about deleting and withholding the data as the records get older.
A note on the agency's website summarizes its position:
"Due to the sensitive nature of the data and limited resources, DHSS staff cannot provide data or records beyond what are displayed on this website."
"That's really disgusting," said Schaaf, the state representative. "It was never intended that (the data) be public just for a little while."
Van Tuinen, the state data manager, offered this explanation: "It's medical data. We wouldn't be getting it except for the statute. Hospitals are sensitive about comparisons with each other."
purge could be illegal
Some critics suggest that it may be illegal under Missouri public records laws for state officials to purge these records.
"It sounds like they're violating the spirit if not the letter of the law," said Ken Bunting, executive director of the National Freedom of Information Coalition. "If it's being posted online, they don't need to take it down."
Though the Post-Dispatch couldn't get the information from the state, the newspaper was able to review the infection rate data of St. Louis area hospitals from 2005 through 2008, thanks to the St. Louis Area Business Health Coalition, which represents some of the area's largest employers. The coalition copied the information each year before it was removed.
Using that data along with 2009 results still made available by the state, the Post-Dispatch revealed Sunday that numerous hospitals had patient infection rates higher than the national average over multiple years in their intensive care units and after certain surgical procedures. Several hospitals also performed better than the national average or showed improvement during this period.
Those revelations, experts say, underscore their point that data are best viewed over time.
"What you want to see is if a hospital has improved," said Teresa Horan, chief of performance metrics at the federal Centers for Disease Control and Prevention.
Schaaf said the state may be trying to protect hospitals from potentially negative revelations.
"How do you know the hospitals didn't make an issue of it behind the scene?" he said.
Daniel Landon, senior vice president of governmental relations for the Missouri Hospital Association, said he is not aware of any lobbying effort by hospitals to expunge older infection data.
Landon helped shape the original legislation to make it more acceptable to hospitals. One of the association's main concerns was liability. Hospitals feared their infection data would be used in court to establish a standard of care.
Asked whether the policy of erasing data is in the public interest, Landon said: "I would defer to the Department of Health."
'A LOT OF WORK'
Maintaining the data on the website isn't as easy as it might seem, Van Tuinen said. The issue, he said, is time and money.
"For us to save the old (numerical) tables each quarter would take a lot of work," he said. "It isn't that simple an operation."
No specific appropriations were made to fund the 2004 law, but Donnelly's office estimates the agency spends about $242,000 a year in state and federal funds to implement it. Nearly half of these funds are spent on two staffers who investigate complaints about health care-associated infections.
The law requires the health agency to publish studies including an annual consumer guide to hospital infections. The agency, whose annual budget is nearly $1 billion, says it is too cash-strapped for such prevention efforts.
"We ran out of money," said Eddie Hedrick, the state's infection control expert.
Susan Elder, chief of the agency's Bureau of Health Informatics, said the method for posting and deleting the infection data was "vetted by the Missouri Hospital Association."
"Essentially, we write over what the previous report was," she said, describing how the latest quarter's hospital infection data are added to the state's website. "Those (numerical) tables don't reside anywhere, (but) we have the technical capacity to go in and analyze the data if we choose to do so."
About two dozen other states now require hospitals to collect and report their infection rates, according to the Safe Patient Project. None appear to have a policy of purging data.
Pennsylvania, for example, posts online its hospital infection rates dating back to 2005. Illinois also has begun reporting infection rates on its "hospital report card" website. That state has no plans to purge older data.
The Business Health Coalition publishes its annual report with infection rates for individual hospitals, which includes comparisons over time. Karen Roth, research director for the nonprofit group, said the report is a task the coalition must continue to do since the state apparently won't.
After all, she said, "We have all the data."
