Learn about the Providence Center for Outcomes Research and Education (CORE)'s My COVID Diary research comparing patient-reported data and electronic health record data from people with Long COVID.
Long COVID is a group of health problems that persist after a COVID-19 infection. Symptoms can look very different from person to person and can last for weeks, months, or longer. Researchers are still learning what causes long COVID, who is most at risk, and how to best treat it.
Most studies on Long COVID have used one of two main data sources: electronic health records (EHRs) or patient reports (e.g., journals or surveys). However, these two sources are known to provide different views of a person’s health.
To learn more about what each source can tell us about Long COVID, the Providence Center for Outcomes Research and Education (CORE) compared EHR data with patient-reported data from people living with long COVID.
CORE’s research shows how these two sources differ and how combining them can paint a fuller picture of Long COVID.
Read more about the study and its findings below. Or read the peer-reviewed paper at the journal BMC Infectious Disease.
EHR data and patient-reported data: how they differ
Healthcare providers use EHRs to record details from clinic and hospital visits. For example, symptoms, diagnoses, or treatments. Yet how this information is entered can vary. Plus, EHRs don’t capture patients’ day-to-day experiences.
Patient-reported data captures people’s experiences in their own words. Journals and surveys show what it feels like to live with Long COVID. However, how people remember or describe their symptoms can vary.
What the study found
For this study, CORE looked at journal entries and EHR data from 92 adults with Long COVID who participated in Providence’s My COVID Diary project. Comparing the two types of data revealed several key findings:
- More detail in self-reported data: Journals often included hard-to-diagnose symptoms, like brain fog, severe fatigue, or mental health issues. They also described the impacts of Long COVID on people’s daily lives, work, and social activities.
- Overlap in common symptoms: Fatigue, pain, breathing problems, and heart issues appeared often in both data sources.
- Differences between sources: When we compared patients’ journal entries with their medical records from the same week, the two sources didn’t always line up. People sometimes wrote about symptoms that weren’t noted in their medical records. Or their medical record included details that weren’t in that week’s journals. This highlights the limits of relying solely on a single clinical record or self-report.
A more complete picture of Long COVID
This study shows the value of using EHR and patient-reported data together, explains Ritu Ghosal, research associate at CORE.
“By combining EHR data and journals, researchers and care providers can better understand and respond to the complex needs of people with long COVID. This approach brings us closer to a healthcare system that sees and supports the whole person.”
Combining these data sources can lead to better care by:
- Capturing symptoms that might be missed during medical visits
- Showing how Long COVID affects people’s lives outside the clinic
- Helping create care plans that meet patients’ medical, social, and mental health needs
“These insights were made possible thanks to the time and effort of everyone who joined the My COVID Diary project,” adds Ghosal. “We learned so much, and we are deeply grateful for their time and help.”
For more information about this study, read the peer-reviewed paper in BMC Infectious Disease.
Visit the links below for more information about CORE and our COVID-19 research.
