Even for potentially devastating test results, patients say they want to see their results as soon as possible, even if it means reading the news without their physician. But those who viewed abnormal results were three times more likely to be more worried after viewing them than those who saw normal results.
A recent study co-led by researchers at UT Southwestern and Vanderbilt University published in JAMA Network Open reveals that patients are overwhelmingly in support of a rule from the 21st Century Cures Act that requires medical test results to be released as soon as they are ready. Before the act, each medical provider had rules about what to share through its online portal. While many systems already made most information available, results that could be misinterpreted or cause emotional distress were withheld until patients could meet with their physicians to discuss the results.
Patients are taking advantage of the new rule and appreciate the change. After the rule went into effect, a previous study found that patients became four times more likely to view their medical records before connecting with a physician. UTSW’s recent data shows that 96 percent of respondents preferred immediate access to test results, and 95 percent of patients with abnormal test results felt the same. About 90 percent of patients said they wanted to get their results directly through the portal in the future, even if the physician had not seen their results.
Nearly half of the respondents felt less worried after viewing the results, but 7.5 percent felt more worried. Those who viewed abnormal results were three times as likely to be “more worried” or “much more worried” than those who viewed normal results. Some physicians are worried about the impact of these rules on patients long-term.
“We’re often looking at information written for the ordering physician to understand, not for the general public. That’s where we’ve seen a lot of emotional psychosocial distress and misunderstanding,” UTSW oncologist Dr. David Gerber told D CEO Healthcare last year. “For some information, if you hear it in the context of someone who understands the significance, what it means, and what the plan is, that can prevent people from assuming something is harmful or serious when it’s not. When something truly is medically significant, they hear about it with other information that would empower them.”
Study co-author UTSW emergency medicine assistant professor Dr. Robert Turer says the results harken to the future of a more decentralized healthcare system. Traditionally, the physician has been the center of the healthcare universe. Still, patients are becoming savvier, shopping around among health systems for different services and using their health data to make informed decisions. Immediate access to health data and test results is part of the shift that patients demand.
“As care continues to become decentralized and dependent on digital solutions, our understanding of patient preferences related to the use of such technologies will be central to developing workflows that support a positive experience for both patients and clinical teams,” Turer said via release.
Turer says that his clinical experience reflects the study’s results as well. When patients get the results in private, they can mourn or celebrate and organize their thoughts and questions before meeting with the physician.
While the results of respondents were precise, Turer notes that out of 43,000 surveys sent, less than 9,000 patients responded. They were likely more comfortable with technology, but the vast majority did not share their feelings about the ability to access test results before their physician. He says that more work will need to be done to understand how these rules impact those who are not as adept at accessing the online portal or those who don’t speak English.
Patients’ preference to see their results should spur further research to see how access to information can be balanced with counseling and guidance from the medical team and how systems can make access to the data more equitable, Turer says.
“There will be variations in how patients receive data, how they want to be contacted, and how much help they want. We also need to be thoughtful about how we define notification preferences. It’s a nuanced topic, and everything requires context.”
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