Leading the Way to Health Equity Through Better Alzheimer’s Data

In the U.S., racial and ethnic disparities in diagnosing and treating Alzheimer’s disease is a national priority. Blacks and Hispanics are at increased risk for Alzheimer’s compared to non-Hispanic whites, yet data shows that these groups are less likely than whites to be diagnosed with the condition.

A recent article coauthored by BrightFocus Vice President, Scientific Affairs Diane Bovenkamp, PhD, proposes a new way to narrow these racial and ethnic disparities in Alzheimer’s research through the development of standardized electronic health records. This would allow clinicians to collect and share real-world data about Alzheimer’s and related dementias across diverse population groups including race, ethnicity, and geography.

The system, called the Standard Health Record for Dementia (SHRD, pronounced “shared”) would replace the current unstandardized, fragmented, or missing state of key real-world information sharing with an open source, consensus-based, and interoperable common data standard. SHRD could be used to advance equity by strengthening public health surveillance by facilitating Alzheimer’s and related dementias registry reporting, improving case detection and staging, and diversifying participation in clinical trials.

“Standardizing electronic health records to improve the accuracy, speed, and diversity of patient recruitment could be a game changer in efforts to achieve equity toward better Alzheimer’s prevention, detection, and treatment,” Dr. Bovenkamp said.

SHRD was modeled after a similar open-source standard health record for oncology— mCODE™ (short for Minimal Common Oncology Data Elements), where one of the founding collaborators was The MITRE Corporation, which is now the driving force behind the creation of SHRD (including the paper’s corresponding author, Dr. Elaine Swift). Since its launch in 2018, mCODE has been adopted by leading health systems and electronic health record vendors to improve overall cancer data quality for patient care and research.

The article, “Standardizing Electronic Health Record Data on AD/ADRD to Accelerate Health Equity in Prevention, Detection, and Treatment,” was published in the Journal of Prevention of Alzheimer’s Disease. Its coauthors include scholars from Johns Hopkins University School of Medicine (including lead author and BrightFocus grantee Dr. Kostas Lyketsos), the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease), the Alzheimer’s Drug Discovery Foundation, and the Banner Alzheimer’s Institute/University of Arizona College of Medicine.

About BrightFocus Foundation

BrightFocus Foundation is a premier nonprofit funder of research to defeat Alzheimer’s, macular degeneration, and glaucoma. Through its flagship research programs—Alzheimer’s Disease Research, National Glaucoma Research, and Macular Degeneration Research—the Foundation is currently supporting a $75 million portfolio of 287 scientific projects. BrightFocus has awarded nearly $275 million in groundbreaking medical research funding since inception and shares the latest research findings, expert information, and English/Spanish disease resources to empower the millions impacted by these devastating diseases.  Join our community at brightfocus.org.

Dr. Bovenkamp, along with some of her co-authors and representatives from the Centers for Medicare and Medicaid Services, Epic, GenomeX, CodeX, and Vanderbilt, presented the article’s findings and lessons learned from prior efforts to standardize cancer, cardiovascular disease, and genomic data at a virtual panel discussion presented by the Alzheimer’s Association International Society to Advance Alzheimer’s Research. The webinar took place on Nov. 1, 2022.