Penn researchers found that patients are often willing to share their Google search histories with medical researchers and allow them to be analyzed alongside their medical records
Health-related internet searches doubled during the week before patients visited an emergency department, according to a new study from researchers at Penn Medicine who examined consenting patients' Google search histories in relation to their electronic health records (EHRs). The study, published today in BMJ Open, is believed to be the first of its kind to link private search data to EHRs at the individual level. The study also shows that patients--roughly half--are willing to share their search histories and combine them with their personal health records.
"Even though we're in the early stages of this research, we've learned a lot about the questions patients ask before making the decision to visit an emergency department (ED), as well as questions they have about their care after their visit," said lead author Jeremy Asch, an innovation strategist in the Penn Medicine Center for Digital Health. "Knowing what patients look for before visiting an ED can help us anticipate their needs and direct them to the best sources of care. And knowing what they search for afterward tells us how we can communicate better and help patients on their paths."
Between 2016 and 2017, the researchers approached adult patients in a large, urban emergency department to determine whether they would be interested in sharing their Google search histories and electronic health records for the study. Of more than 300 patients who reported having a Google account, almost half (49 percent) were willing to share access to their search histories and health records with researchers.
Google searches for health-related information doubled among patients in the week before an ED visit, with more than half searching for clinical information related to the reason for their visit, such as the symptoms they were experiencing or potential illnesses they believed they might have. Another 15 percent searched for the location of the emergency department or other logistical information. Patients often searched health-related terms multiple times before heading to the hospital.
The results also revealed gaps in communication that clinicians may not realize they've created. One participant in the study first searched, "How big is a walnut?" followed by "What is a fibrous tumor?" The medical records revealed that the patient had been told she had a "walnut-sized fibrous tumor."
"The physician caring for that patient might have believed effective communication took place," said Asch. "But if the patient then had to look up the two key terms--'walnut' and 'fibrous tumor'--it's clear that the patient communication wasn't effective enough."
Senior author Raina Merchant, MD, director of the Center for Digital Health and an associate professor of Emergency Medicine, pointed out that this type of data can "reveal what patients are uncomfortable asking about," along with what they might not understand. Through this, physicians can adjust how they present information or approach certain topics.
"Rather than sending patients to 'Dr. Google,' we wonder whether we can provide more useful information in their appointments based on what they really care about," Merchant said.
Other studies examining social media have turned up promising results, such as one by Merchant and her colleagues showing that terms in Facebook posts can predict the diagnosis of depression three months before doctors put it in the medical record. But search histories are hidden and may reveal what people are truly wondering or might be too embarrassed to bring up. In this way, the search histories examined in this study are potentially more revealing than Tweets or Facebook posts.
"When you read Facebook posts, you are listening to what people want to tell you, but when you read search histories, you learn what people want to know," said Merchant. "In the end, really understanding what people want to know may be the most beneficial for impacting care."
Asch said that the rate of people who consented to have the researchers analyze their search histories was actually consistent with previous studies examining social media posts.
"When the study began, we wanted to understand more about patients' willingness to share online search data," Asch said. "As it turns out, people are fairly willing to share this information for health research. And with the right privacy and use protections, it's a great thing. People use digital resources constantly, and we want to know what the data says about us and how it can help."