This is why your cardiologist asks about your marital status. Your response might help researchers understand why single moms are more likely to have cardiovascular disease than their married counterparts. And telling your optometrist your race is one of the only ways to learn what role race might play in patients using weight loss drugs experiencing vision loss.
Other researchers have used data from electronic records to determine how many people in a geographic area or of a certain demographic group have diabetes, to predict dementia and even to track gum disease.
During the COVID-19 pandemic, researchers used data from electronic health records to determine what types of people were getting sick. They investigated COVID-19 patients’ race, geography and insurance status. Researchers continue to use this data to track long COVID, a condition that health professionals still don’t completely understand.
Honoring patient privacy
Of course, these health information exchanges are careful about how and with whom they share patient data. The data is tailored to the needs of the study and shared in compliance with the Health Insurance Portability and Accountability Act, or HIPAA.
For instance, for my most recent preeclampsia study, the health care system sent a dataset that contained limited pieces of personal information, like the baby’s birth date, the mom’s birth date — since we often need to know how old she was when she gave birth — and their ZIP code so we can see trends in preeclampsia across geographic areas.
The data wasn’t allowed out of the health system’s virtual private network, so the data remains within our firewall. This ensures that the data remains safe. And all of this must be approved by our university’s institutional review board, a rigorous process that ensures our research can’t harm participants.
Improving health care for everyone — including you
All of this research drives innovation and serves as a basis for the programs, protocols and policies that improve health — from you as an individual all the way to the national and even global level.
Your doctor can use the information you provide to recommend services or therapies for you. For instance, if your doctor finds out through check-in questioning that you haven’t had enough food in the past month, they can refer you to a nutrition program, sometimes run by the hospital system itself. If you were married at your last appointment but now list your marital status as “separated,” your doctor can check in with you to see if you need any additional mental health or social services.
While it’s normal for these personal questions to feel a little uncomfortable, it helps to remember that there is a good reason your doctor is asking them. Your data can help move medical research forward.
This article is republished from The Conversation under a Creative Commons license. Read the original article.
Jill Inderstrodt is assistant professor in the Indiana University Indianapolis Fairbanks School of Public Health and research scientist in the Center for Biomedical Informatics at Regenstrief Institute. Through its opinion section, Kansas Reflector works to amplify the voices of people who are affected by public policies or excluded from public debate. Find information, including how to submit your own commentary, here.
