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The Fragmentation of Health Data

A Survey of The Health Data Ecosystem At Datavant, we’re focused on the vision of connecting the world’s health data to improve patient care and speed the development of new treatments. As part of this, we put together an “ecosystem map,” outlining how data flows across healthcare today. *** Update (September 2019):…

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The Datavant Vision: Organizing the World’s Health Data

Datavant’s vision is to organize the world’s health data. We believe that this is one of the most important data challenges of this era: if we are successful over the next 20 years, we are confident that our work will improve patient outcomes, bring medicines and medical solutions to market…

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A Novel Patient Recruitment Strategy: Patient Selection Directly From the Community Through Linkage to Clinical Data

Lindsay P. Zimmerman, Satyender Goel, Shazia Sathar, Charon E. Gladfelter, Alejandra Onate, Lindsey L. Kane, Shelly Sital, Jasmin Phua, Paris Davis, Helen Margellos-Anast, David O. Meltzer, Tamar S. Polonsky, Raj C. Shah, William E. Trick, Faraz S. Ahmad, and Abel N. Kho
This paper outlined a novel workflow for recruiting potential trial patients. Members of the community were identified, surveyed, and then assigned an encrypted and hashed identifier. Concurrently, data from a variety of hospitals was linked together at the patient level. Via the encrypted and hashed identifier, the investigators could connect data from the hospital systems to understand whether someone was eligible for the study. The method of recruitment was significantly more efficient than the typical process for most clinical trials.

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Disease Outcomes and Care Fragmentation among Patients With Systemic Lupus Erythematosus

Theresa L. Walunas, Kathryn L. Jackson, Anh H. Chung, Karen A. Mancera-Cuevas, Daniel L. Erickson, Rosalind Ramsey-Goldman, and Abel Kho
By linking data across six different Chicago health institutions, the researchers were able to understand the extent to which patients with systemic lupus erythematosus (SLE) receive fragmented care and the impact of said care. In identifying 4,276 patients with SLE, 20 percent received care from more than 1 institution; those patients were more likely to have complications, including increased risk of infections, cardiovascular disease, and stroke.

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Validity of Cardiovascular Data From Electronic Sources

Faraz S. Ahmad, Cheeling Chan, Marc B. Rosenman, Wendy S. Post, Daniel G. Fort, Philip Greenland, Kiang J. Liu, Abel N. Kho, and Norrina B. Allen
The authors sought to understand the degree of agreement of electronic data research networks as compared to data collected by standardized research approaches in a cohort study. The comparisons were made by linking data from MESA (Multi-Ethnic Study of Atherosclerosis), a community-based cohort, with EHR’s from six Chicago-area hospitals. Ultimately, nearly 70 percent had data in both systems and demonstrated mixed results. For some measurements, such as BMI, the correlations between the MESA and EHR data were quite high. For others, such as systolic blood pressure, the correlation coefficient was only 0.39.

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Payment Reform Needed to Address Health Disparities of Undiagnosed Diabetic Retinopathy in the City of Chicago

Dustin D. French, Jess J. Behrens, Kathryn L. Jackson, Abel N. Kho, Theresa L. Walunas, Charlesnika T. Evans, Michael Mbagwu, Curtis E. Margo, and Paul J. Bryar
By linking together medical encounter data from a number of different Chicago hospital systems, the authors identified 150,661 patients with diabetes (out of a total of two million patients). Using that information, the study estimated the geographic distribution of undiagnosed diabetic retinopathy and found that low-income and minority areas had a disproportionate rate of undiagnosed diabetic retinopathy. Based on that, a new screening mechanism that is not currently funded by Medicare or Medicaid was suggested.

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Does Spatial Access to Primary Care Affect Emergency Department Utilization for Nonemergent Conditions?

Jamie Fishman, Sara McLafferty, and William Galanter
The study attempted to understand the utilization of emergency departments for preventable conditions at the individual and neighborhood level by linking together emergency department admissions from four Chicago hospitals. By combining the data, the authors showed that individuals in medically underserved areas (MUAs) had a larger chance of emergency department use that could have been prevented.

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Distance from Hospital Impacts Adverse Event Detection After Outpatient Endoscopy

Kathryn L. Jackson, Satyender Goel, Abel N. Kho, and Rajesh N. Keswani
Using the HealthLNK Data Repository, the authors sought to understand the relationship between hospital utilization and distance from the index hospital for patients with adverse events following an ambulatory endoscopy. Using mortality as the endpoint, the authors found that of the 86 patients (of the 22,898 in the study) who had early mortality, nearly half did not return to the index hospital. In total, there was a statistically significant relationship between a patient’s utilization of their index hospital and their proximity.

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An Evaluation of Recurrent Diabetic Ketoacidosis, Fragmentation of Care, and Mortality Across Chicago, Illinois

James A. Mays, Kathryn L. Jackson, Teresa A. Derby, Jess J. Behrens, Satyender Goel, Mark E. Molitch, Abel N. Kho, and Amisha Wallia
Some patients with diabetes are hospitalized repeatedly for diabetic ketoacidosis (DKA), which is typically associated with worse clinical outcomes. The authors analyzed recurrent DKA and fragmentation of care across six institutions in the Chicago area, using Datavant technology to understand when the same patient would have different DKA episodes in different hospitals. The study found that of the 3,615 patients, 21.6% had recurrent DKA; of the 780 recurrent patients, 125 were hospitalized at more than one hospital.

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