A consortium of health data researchers in Chicago is leveraging work on several projects and a recent $7 million round of funding from the Patient-Centered Outcomes Research Institute to advance both study recruitment and quantitatively-based public health delivery.

The PCORI-funded project, the Chicago Area Patient-Centered Clinical Outcomes Research Network, or CAPriCORN, will create a common base of de-identified information on more than 1 million Chicago residents, with the intention of making study recruitment and analysis much easier across participating institutions. The people behind the work also believe they may be taking a big step toward meeting the elusive goal of providing large amounts of data that is also "cleaner" than unfiltered public-facing data such a Google Flu Trends or other crowdsourced outlets for action by public health officials and long-term initiatives by policymakers.

"CAPriCORN gives us an opportunity to--in a very thoughtful manner, working with lots of other people--pull together more data sources, primarily clinical, and make it even closer to real time," says Abel Kho, M.D., co-executive director of the Chicago Health IT Regional Extension Center. Kho is also leading the CAPriCORN effort at Northwestern Medicine, where he is an assistant professor of medicine, combining expertise in internal medicine and informatics. "We are trying to go to a distributed query model where we can set up real-time queries across all the systems involved, or part of them, so you can aggregate data and get a pretty decent picture of what's going on. You can identify cohorts for future studies, and if you have appropriate consent, you can follow up with patients and enroll them."

Kho says the PCORI-funded work is especially pertinent in Chicago, where he says there are great disparities in overall population health, and in the efficacy of healthcare delivery, on an almost neighborhood-by-neighborhood basis.

"One of our long term goals, sort of an ambitious goal, is we want to put the data together and understand things like, for example, what are some conditions that are most closely associated with your socioeconomic region or your status?" Kho says. "We think if we have a large enough data set we can start creating those associations so that a policy planner like a public health official or somebody with the ability to move issues along can say, 'If I change the smoking status of 10 percent of the population in this area, I'll see a 50 percent drop in diabetes or obesity or something else, but I won't affect the following conditions.' It allows you to start figuring out quantitatively what is the impact of various types of environmental factors and behaviors on the diseases of an individual, but also the disease rates of a population."

The research consortium includes 10 hospitals across the greater Chicago region, including academic, non-academic, and VA hospitals. Kho says the effort currently includes approximately 5 million aggregated records in the region and 1.3 to 1.4 million in the city itself.  All personal health information except for postal codes has been encrypted. The postal codes have been retained so the researchers can show regional variations in their studies.

Kho says one of the biggest benefits of CAPriCORN is not a technical advance, but a procedural one, in which a centralized institutional review board will evaluate partners' proposals, instead of necessitating applying to seven separate IRBs.

"In many ways, CAPriCORN is a culmination of many years of hard labor, and now we are trying to find ways to make it technically efficient, process efficient, and regulatory-efficient," Kho says. "We think if we can get this right, we can make this a model and make some of these tools available to other regions."

Beyond the immediate goals of streamlining comparative effectiveness research, Kho says the technology foundation the Chicago-area researchers have created is part of a much more ambitious vision.

Northwestern is home to the NIH PROMIS (Patient Reported Outcomes Measurement Information System) Assessment Center, which develops instruments for patient surveys that can add quantitative patient-reported data to that generated by clinicians. Kho envisions a huge quantitative "sandwich" in which basic genomic and proteomics data forms the lowest layer, the EHR data the middle layer, and quantified patient-reported and environmental data the top layer.

"If you can get the scale to include the environmental exposures, patient-reported outcomes, the middle layer of EHR data, and then the basic core layer of unchanging data about a person's genetic profile, you have the ability to do some amazing things," he says. "We think Chicago is perfectly positioned for that, because of the disparities, the diversity of the population, and the size of the population.

"We could do big studies that could tell us what combinations of people and exposures could lead to various combinations of diseases, and what combinations of interventions could reduce those. That's the stuff that gets people excited in our group. Even if there isn't a specific funding mechanism around something, we want to move that way because it's the right thing to do."

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