Last summer, Anna Ramsey suffered a flare-up of juvenile dermatomyositis, a rare autoimmune disease, offering a terrifying prospect for the Los Angeles resident: she may have to undergo chemotherapy, further compromising her immune system during a pandemic .
After an agonizing three-day wait, the results of a blood test came back to her online patient portal, but she didn’t understand them. As the hours passed, Ramsey bit his fingernails and paced around. The next day, she gave in and emailed her doctor, who responded with an explanation and a plan.
For Ramsey, now 24, instant access to her test results had been a mixed blessing. “If there is something that really worries me,” she said, “then I want interpretations and answers with the result. Even if it takes a few more days. “
April 5 a federal The rule went into effect that requires health care providers to give patients like Ramsey electronic access to their health information without delay upon request, at no cost. Many patients can now find their doctor’s clinical notes, test results and other medical data on their electronic portal as soon as they become available.
Advocates herald the rule as a long-awaited opportunity for patients to take control of their data and their health.
“It levels the playing field,” said Jan Walker, co-founder of OpenNotes, a group that pushed providers to share notes with patients. “Ten years ago, the medical file belonged to the doctor.
But the rollout of the rule has run into trouble, as doctors learn that patients can see information before them. Like Ramsey, some patients have felt anxious when they saw test results drop through their portal without a doctor’s explanation. And physician groups say they are confused and worried about whether the notes of adolescent patients who don’t want their parents to see sensitive information can be exempted – or whether they will have to violate their patients’ trust.
Patients have long legal right to their medical records, but often had to pay fees, wait weeks, or sift through reams of paper to see them.
The rule aims not only to remove these barriers, but also to allow patients to access their health records through smartphone apps, and to prevent healthcare providers from not disclosing information to other providers. and healthcare IT companies when a patient wants to share them. Privacy rules under the Health Insurance Portability and Accountability Act (HIPAA), which limit the sharing of personal health information outside of a clinic, remain in place, though privacy advocates have warned that patients who choose to share their data with consumer applications will put their data at risk.
Studies have shown many benefits of sharing notes. Patients who read their notes understand learn more about their health, better remember their treatment plan and are more likely to stick to their medication diet. Non-white, older or less educated patients bring even greater benefits that others.
For Sarah Ford, 34, of Pittsburgh, who has multiple sclerosis, reading her doctor’s notes helps her make the most of every visit and feel informed.
“I don’t like going to the office and feeling like I don’t know what’s going to happen,” she said. If she wants to try a new drug or treatment, reading previous notes helps her prepare to discuss it with her doctor, she said.
The new rule will have less impact on Ford and the more than 50 million patients in the United States, whose doctors had already made their notes available to patients before the rule came into effect. However, only about a third of patients with access to secure online health portals were using them.
While most doctors who have shared notes with patients think it’s a good idea, politics has drawbacks. A recent study find that half of the doctors said they wrote their notes less candidly after being opened to patients.
Another study, published in February, find that one in 10 patients had ever felt offended or judged after reading a note. The main author of the study, Leonor Fernandez, MD, of Beth Israel Deaconess Medical Center, said there is a “legacy of certain ways of saying things in medicine that don’t really take into account how it reads when you’re a patient.”
“Maybe we can rethink some of them,” she said, citing the phrase “patient admits to drinking two glasses of wine a day” as an example. “Why not just write ‘two glasses of wine a day’?”
UC San Diego Health began phasing in open patient notes in 2018 and removed a delay in releasing lab results last year. Overall said Brian clay, MD, Chief Medical Officer, both went off without incident. “Most of the patients are agnostic, some are super-jazzy, and a few are distressed or have a lot of questions and communicate with us a lot,” he said.
There are exceptions to the requirement to disclose patient data, such as psychotherapy notes and notes that could harm a patient or someone else if published.
David Bell, MD, president of the Society for Adolescent Health and Medicine, says it’s unclear exactly what qualifies as “substantial harm” to a patient – the standard that must be met for doctors to withhold notes. from an adolescent patient to a parent. Clarity, he said, is especially important in protecting teens living in states with less restrictive laws on parental access to medical records.
Most electronic health records are not equipped to separate sensitive items from other information that might be useful for a parent in managing their child’s health, he added.
Some doctors say that receiving devastating test results without counseling can traumatize patients. James kenealy, MD, an ear, nose and throat doctor in central Massachusetts, said a positive cancer biopsy result for one of his patients was automatically pushed to his portal over the weekend. end, blinding them both. “You can give bad news, but if you have a plan and explain, they’re much better off,” he said.
Such incidents do not affect the majority of patients, but they are not uncommon, said Jack Resneck Jr., MD, member of the board of directors of the American Medical Association (AMA). WADA is advocating for “adjustments” to the rule, he said, such as allowing short delays in the release of the results of some of the more complex tests, such as those diagnosing cancer, and more clarity as to whether the harm exception applies to adolescent patients who might face emotional distress if their doctor breached their confidence in sharing sensitive information with their parents.
The Office of the National Coordinator of Health Information Technology, the federal agency overseeing the rule, responded in an email that it had heard the concerns, but also heard clinicians say patients appreciate receiving this information in a timely manner and that patients can decide whether they want to review the results once they receive them or wait to be able to review them with their doctor. He added that the rule does not require parents to have access to protected health information if they do not already have that right under HIPAA.
Patient advocate Cynthia fisher believes there should be no exceptions to the immediate release of results, noting that many patients want and need test results as soon as possible, and that delays can lead to worse health outcomes. Instead of facing long wait times to discuss diagnoses with their doctors, she said, patients can now bring their results elsewhere. “We cannot assume that the consumer is ignorant and lacking in resources,” she said.
Meanwhile, hospitals and physicians are finding ways to adapt, and their tactics could have lasting implications for patient knowledge and physician workloads. At Massachusetts General Hospital, a guide for patients on how to interpret medical terminology in radiology reports is being developed, said William mehan, MD, a neuroradiologist.
An internal investigation conducted after the radiology results were immediately available to patients found that some doctors were monitoring their inbox after hours for results. “Burnout showed up in this conversation,” Mehan said.
Some electronic health records allow doctors to withhold test results when they are ordered, said Jodi daniel, partner at Crowell & Moring law firm. Doctors who can do this could ask patients if they want their results published immediately or if they want their doctor to communicate the result, assuming they meet certain criteria for exceptions under the rule. she declared.
Chantal Worzala, a health technology policy consultant, said more was to come. “There will be a lot more discussion about the tools individuals want and need to access and understand their health information,” she said.