In a recent segment on NPR’s Morning Edition, commentators discuss the potential of using electronic health records to customize medical treatments.
Dr. Harlan Krumholz, a professor of medicine at Yale University, says comparing data in electronic health records with genomic information holds great promise for customizing individual treatments, but he warns that the quality of data collected in the medical record is not research quality. While researchers are making a positive start with initiatives such as the Precision Medicine Initiative (re-branded as the All of Us research program), medicine still has a long way to go to fully realize the potential of these data.
Dr. Harlan Krumholz will be presenting at an upcoming NIH Collaboratory Grand Rounds on January 13 from 1:00 – 2:00 p.m. ET. “What’s Next: People-Powered Knowledge Generation from Digital Health Data.” Join the meeting here.
The full article and audio can be found on NPR Shots, an online channel for health stories from the NPR Science Desk.
The NIH Collaboratory’s Phenotypes, Data Standards, and Data Quality Core has released a new white paper on data quality assessment in the setting of pragmatic research. The white paper, titled Assessing Data Quality for Healthcare Systems Data Used in Clinical Research (V1.0) provides guidance, based on the best available evidence and practice, for assessing data quality in pragmatic clinical trials (PCTs) conducted through the Collaboratory. Topics covered include an overview of data quality issues in clinical research settings, data quality assessment dimensions (completeness, accuracy, and consistency), and a series of recommendations for assessing data quality. Also included as appendices are a set of data quality definitions and review criteria, as well as a data quality assessment plan inventory.
The full text of the document can be accessed through the “Tools for Research” tab on the Living Textbook or can be downloaded directly here (PDF).
Archived video and slides from the April 18 Grand Rounds are now available on the NIH Collaboratory Grand Rounds webpage.
This Friday’s NIH Collaboratory and PCORnet Grand Rounds (“Building PCOR Value and Integrity With Data Quality and Transparency Standards: An Introduction and Request for Input”) will be presented by Michael G. Kahn, MD, PhD, professor of epidemiology in the Department of Pediatrics at the University of Colorado Denver. Dr. Kahn is co-director of the Colorado Clinical and Translational Sciences Institute (CCTSI), Translational Informatics Core director for the CCTSI, and director of clinical informatics in the Department of Quality & Patient Safety at The Children’s Hospital.
The Grand Rounds presentation will take place from 1:00-2:00 PM Eastern time on Friday, April 18. Details are available here. Archived video and slides from the presentation will be available early the following week; links to archived material will be provided in an update to this post.