By Christine Kern, contributing writer
Consortium leverages database to study public health delivery
According to Health Data Management, “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 is called the Chicago Area Patient-Centered Clinical Outcomes Research Network, or CAPriCORN. It will create a common base of de-identified information on more than one million Chicago residents in order to ease study recruitment and analysis across participating institutions. One of the goals of the study is to move towards providing large amounts of data that is "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.
Abel Kho, M.D., the co-executive director of the Chicago Health IT Regional Extension Center, explained, "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."
Kho is also an assistant professor of medicine at Northwestern Medicine, where he will be leading the CAPriCORN effort. "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."
The PCORI-funded work is particularly important for Chicago, where great disparities exist in overall population health and the efficacy of healthcare delivery, on an almost neighborhood-by-neighborhood basis.
The research consortium includes 10 hospitals across the greater Chicago region, including academic, non-academic, and VA hospitals, and 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.
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 melding of data sets, combining basic genomic and proteomics data, EHR data, and quantified patient-reported and environmental data.
Kho explained, "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. 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."