A checkup on Chicago’s health data | WBEZ
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A checkup on Chicago's health data

Four years ago, in a sweaty Humboldt Park Fieldhouse, Mayor Rahm Emanuel launched a bold new plan he called Healthy Chicago.
 
Joined by the health commissioner, the mayor pinpointed 16 key health issues--including teen pregnancy, smoking, stroke death, breast cancer and asthma. They set 2020  progress goals for each of those health issues and promised yearly--even monthly--updates on where Chicagoans stood.
 
“By having a clear mission with clear priorities and having a way to measure them and make sure we are not only setting goals but achieving them...we will have the greatest impact on our public health,” Emanuel said at the time.
 
But four years later--about halfway into the 2020 plan--health department officials say they still don’t know where we stand on most of them.
 
The era of big data brought big promises from the Emanuel administration, but, for a host of reasons, delivering on pledges to post timely health updates didn’t happen. 
 
“Over time what we’ve realized is that the data were not always available in a timely fashion,” said  Health Commissioner Julie Morita who took office this spring. Today, she says, she can update about seven of the original 16 goals. On the others, there’s just not enough information. 
 
For instance, the most recent data the department released on stroke deaths, birth weight, birth rate and breast cancer came from 2009. The most recent data it has on produce consumption, teen smoking, dating violence and blood pressure comes from 2011. 
 
And this information isn’t just interesting for journalists who want to keep tabs on city promises, it can be critical to smart funding decisions and, more important, for tracking disease.
Dr. David Ansell leads the Metropolitan Chicago Breast Cancer Task Force, which is trying to close the breast cancer mortality gap between black and white patients in Chicago. But he’s had to rely almost entirely on data from the federal government. That’s because, Ansell and others report, essential local health information is getting bottlenecked at the state level.
 
“It’s almost impossible to get the data from the state cancer registry,” he says. “And I think it’s a major public health problem…. It’s almost as if they have the data but they don’t share it in a way that’s useful. This is a matter of life and death because the goal is to improve the life conditions of the people in Chicago and state--and its absence is a travesty.”

Illinois Department of Public Health director Nirav Shah points out that the Illinois Cancer Registry has earned awards as recently as 2013 for 2010 data collection. But he also says he wasn’t aware of concerns about data bottlenecks in his department. And, he explains, data sharing is a complicated process.
 
“Even after data are reported, such as for cancer, they have to then be collected in accordance with federal standards for privacy and quality,” he said. “We have to make sure that the data are maintained in a secure fashion and that nothing gets out the door that shouldn’t get out the door. And that the data on file are of high quality that they have not been duplicated. They also have to be checked for accuracy. That process is not an easy one, and it does take some time.”
 
Indeed, privacy and duplication concerns play a role in slowing the data. But many say methods for addressing them are getting better and faster. Indeed, several local initiatives are underway to improve speed, compatibility and accessibility of health data. But they may not bear fruit for a few years,
 
In the meantime, Health Commissioner Morita is working on Healthy Chicago 2.0, a program that will be unveiled later this year. She says it will create a new set of health priorities for the city, and this time, ensure that systems are in place to actually keep track of the progress.
 
The plan will also have the benefit of new data generated by the department itself. Late last year CDPH launched the first Healthy Chicago survey. It was done with more than 2,500 residents who answered a battery of health questions by phone. 
 
“I feel like it’s a recognition of the need to have timely data in areas of concern,” Morita said. “So we can definitely allocate our resources in the appropriate places.”
 
While a 2,500-person survey can sound puny, health data experts say that a well-conducted survey of that size could actually be very valuable. Currently a lot of our information comes from the national  Behavioral Risk Factor Surveillance System, which only captures a few hundred Chicagoans.
 
Plus, Morita says, after this first baseline year, subsequent annual surveys will be able to tell us how Chicago’s doing year-to-year. And eventually, “we’ll be able to get down to the community level so we can have health estimates on disease right down to the community level. So we’re really looking forward to having that information available in a timely manner.”
 
 
Monica Eng is a WBEZ producer and co-host of the Chewing The Fat podcast. Follow her at @monicaeng or write to her at meng@wbez.org.
 

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