July 9, 2020: New Chapter of Living Textbook Addresses EHR-Based Phenotyping

The NIH Collaboratory this week published a new chapter of its Living Textbook of Pragmatic Clinical Trials. The chapter, “Electronic Health Records-Based Phenotyping,” provides an overview of considerations for identifying, defining, and evaluating computable phenotypes for use with electronic health records (EHRs).

EHR-based phenotyping is an important strategy in large-scale pragmatic clinical trials, because these studies typically rely on standard phenotype definitions for EHR-based inclusion and exclusion of participants and consistent data analysis and reporting across data sources. Standardized queries of EHR data can be replicated at multiple sites, enabling efficiencies and ensuring that populations identified from different healthcare systems have similar features or were identified in the same way.

The new chapter includes the following sections:

The new chapter updates a previous resource, one of the most popular on the Living Textbook, based on work by experts in the NIH Collaboratory’s Electronic Health Records Core Working Group (formerly the Phenotypes, Data Standards, and Data Quality Core Working Group).

October 10, 2017: NIH Collaboratory Core Working Group Interviews: Reflections from the Phenotypes, Data Standards, and Data Quality Core

At the NIH Collaboratory Steering Committee meeting in May 2017, we asked Drs. Rachel Richesson and W. Ed Hammond, Co-chairs of the Phenotypes, Data Standards, and Data Quality Core, to reflect on the first 5 years of their Core’s work and the challenges ahead.

Both were pleased with how the Core was able to provide guidelines for assessing data quality and the reporting of pragmatic trials, especially around issues with phenotypes and the use of electronic health record data. Future work in this area needs to advance the development of regulations and standards for the collection of clinical data to support learning healthcare systems.

“We’ve built a community in our Core that represents a diverse group of scientists and clinicians showing the many ways to look at data challenges.”
– Dr. Rachel Richesson

In Fall 2017, the Phenotypes, Data Standards, and Data Quality Core merged with the Electronic Health Records Core. The combined Core will continue to work on data standards and quality, and approaches to define clinical phenotypes and endpoints, extract information, and discover errors in data from healthcare systems.

Download the interview (PDF).

A PDF of the May 2017 interview with leaders of the Phenotypes Core Working Group.