Filter By “Linking Real-World Data”
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.
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.
Design and Implementation of a Privacy Preserving Electronic Health Record Linkage Tool in Chicago
Abel N. Kho, John P. Cashy, Kathryn L. Jackson, Adam R. Pah, Satyender Goel, Jörn Boehnke, John Eric Humphries, Scott Duke Kominers, Bala N. Hota, Shannon A. Sims, Bradley A. Malin, Dustin D. French, Theresa L. Walunas, David O. Meltzer, Erin O. Kaleba, Roderick C. Jones, and William L. Galanter
The study discusses the design and implementation of a tool that created a secure, privacy-preserving linkage of electronic health record (EHR) data across multiple sites in Chicago. There are a number of uses for this technology, including in clinical research and understanding the fragmentation of care. The software documented in the study was able to link data across the six institutions, resulting in five million unique patient records while de-duplicating seven million records. Today, the software is part of the Datavant offering.