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October 5, 2022

Instant access to medical records sounds like a good thing. Is it?

Daily Briefing

    Under the Cures Act, patients can access their medical results instantly, allowing them to be more active participants in their own care. But some patients have received sensitive results, including cancer diagnoses, before they can speak to their doctors, leading to "emotional and mental harm," Danielle Friedman writes for the New York Times.

    How medical results were brought 'into the modern era'

    To standardize how patients receive results and increase transparency, the Cures Act, which was passed in 2016, included a provision requiring all medical testing centers to release patients' results "without delay." In addition, HHS in April 2021 began to enforce a rule that made "blocking" patients from their own health information against the law, leading to fines for doctors and hospitals.

    According to Friedman, the provision on medical records was intended "bring health care into the modern era" by giving "patients easy access to their medical records, empowering them to play a more active role in their care by eliminating the doctor as gatekeeper."

    For the most part, patients say they appreciate being able to access their health information directly.

    "I feel more in control," said Yasi Noori-Bushehri, a 32-year-old engineer who has Graves' disease, an autoimmune disorder that affects her thyroid hormone levels. In fact, Bushehri said having access to her medical information has given her confidence to ask her doctor to change her treatment plan.

    Similarly, Teresa Christopherson, a 59-year-old who routinely gets updated about the status of her breast cancer online, said receiving test results ahead of time allowed her to feel more prepared before speaking with her doctor.

    "You can go into the next appointment having done your homework," Christopherson said, which helped her "ask the right questions" about potential next steps.

    "Everyone has the right to their own medical information in real time, not on the doctor's time," she added.

    Could instant access lead to emotional distress in some cases?

    Although having instant access to medical results can be beneficial in some ways, there are times where patients have "learned about life-altering diagnoses and developments—from cancer to chronic illness to miscarriage—through emails and online portals" instead of through their doctors, who could have eased them into the information, Friedman writes.

    For example, Nicki Swann, a 38-year-old professor in Oregon, learned she had colon cancer through an app after she had polyps removed. "I couldn't imagine that anything but good news would be shared in that way," she said.

    Although Swann immediately called her doctor's office, the physician was unavailable at that time, and they did not speak about her diagnosis until the following week. "Any cancer diagnosis is going to cause trauma," she said. "But I think it was much worse to receive it in that way."

    According to Emily Porter, an ED and sexual health physician in Texas, when difficult medical diagnoses are instantly delivered to patients online, "it cuts off any opportunity for doctors to get ahead of things."

    "When information is just given in black-and-white type on MyChart, that's not the full expression of compassionate care," said Elizabeth Comen, an oncologist at Memorial Sloan Kettering Cancer Center. "Yes, it is immediate care, but it's care out of context."

    "We have to honor the reality that waiting can feel impossibly hard," Comen added. "But I don't think anything replaces a doctor holding your hand and looking you in the eye and saying: 'I'm going to go through every aspect of this with you in real time. You can ask me your questions. I will read your body language. I will give you tissues. I will be there with you.'"

    Is there a better way for patients to receive sensitive results?

    According to a survey of 1,000 patients from the American Medical Association (AMA), around 42% said they wanted to see their test results as soon as they were available, while 43% said they preferred to speak with their doctors first. However, among patients who preferred instant access, more than half said they would want to speak to their doctor first in the case of a "debilitating, life-limiting or terminal illness."

    Currently, the medical results provision includes a "preventing harm exception" that allows doctors to delay a result, but "the bar for what counts as harm is high: The provider must be able to anticipate that the test results could lead a patient to harm himself or herself," Friedman writes. In addition, any exceptions must be requested by a patient beforehand, which may not be possible when an unexpected result is found through a routine test.

    To allow providers more control over sensitive test results, AMA has urged HHS to make "common sense" exceptions to the current rule. In a statement published last month, AMA requested language be added to "explicitly allow physicians, using their professional judgment, to withhold some information if immediate or proactive release could cause a patient mental or emotional harm."

    Micky Tripathi, the national coordinator for health information technology at HHS, said adjusting to having instant access to medical results "is a really big transition for all of us," but added that officials hoped the Cures Act would encourage patients to be more active in their own care and talk with their doctors about how they want to receive medical information.

    Tripathi said officials hoped to see health care apps introduce more flexible options that allow providers to designate a patient's preferences on specific cases or ways to allow patients to opt out of receiving certain results right away.

    For now, Friedman recommends patients who are undergoing medical tests and concerned about the potential results ask their doctors "for expectations around timing … both in terms of when results might be released electronically and when you can expect to hear from the doctor's office, so you can prepare mentally and emotionally." (Friedman, New York Times, 10/3)

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