Toan Ong, PhD, associate professor of biomedical informatics at the University of Colorado School of Medicine, has been approved for a $1.05 million funding award from the Patient-Centered Outcomes Research Institute (PCORI) for a project that will improve methods of conducting research using electronic health records (EHRs).
Ong and coinvestigator Lisa Schilling, MD, professor of internal medicine in the Department of Medicine, will develop and evaluate novel methods to identify household and family memberships using EHRs and administrative data, allowing richer and more accurate clinical and environmental exposure information about households and families to be used for scientific discovery, epidemiology, and public health.
The award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract. The project has a 36-month term, which is scheduled to begin in early 2023. Many complexities are involved to ensure the methods the data scientists develop will bridge ethical concerns over the use of health information and leverage technological advances in electronic health records, says Ong.
“Families are very complicated,” he explains. “We look from two angles – people who are potentially related, genetically or otherwise, and people who live in the same household, who may not be related but share the same environment.”
Currently, such a linkage does not exist in EHRs. Clinicians documenting a patient’s reported family health history often work under time-limited conditions using legacy EHR systems that do not support accurate and efficient documentation, further complicated by patients who have limited and often inaccurate medical information about their family health history. The ability to make these linkages helps researchers to study whether a disease might be due to a shared exposure (such as secondhand tobacco smoke), shared genetics (such as a genetic cause of heart disease), or both.
Ong specializes in patient-linking EHR data, which has long been a challenge concerning patients with multiple chronic conditions who see multiple providers at different institutions. He credits CU’s strong history of building partnerships with making the family-linking project possible.
“The extraordinary research environment at CU Anschutz, which enables meaningful collaborations between faculty, staff and students in different departments and schools, will be driving force of the execution of this project,” Ong says.
Ten CU researchers will work on the project in collaboration with the U.S. Census Bureau, which will confidentially validate the output of their research methods, and the Rocky Mountain Research Data Center, which will ensure patient privacy and ethical concerns are met. Although the family-linkage methods will not be used in patient care, Ong says the work will indirectly benefit patients by improving the quality of health data available for research and providing transparency in linking family data for research.
“Survey data takes a tremendous amount of effort to investigate,” Ong explains. “If we can leverage data we already have in health systems, we will hopefully accelerate the answer to complex research questions.”
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better informed health care decisions.
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April 8, 2024