The new health care landscape created by bipartisan legislation promoting transparency has exposed flaws in a strained health care system in which the promise of technological advances is undermined by the excessive workload imposed on medical professionals.
As more people receive worrisome results online at the same time as they see their doctor, and it’s not uncommon to wait days or weeks for a treatment plan, medical associations are calling for doctors to give more time to release records that reveal cancer or other dire diagnoses so patients don’t have to bear the news alone.
Mike Day was relaxing in a recliner in his living room last summer when he was diagnosed with cancer. His wife, a former nurse, posted the biopsy results on Day’s electronic patient portal, which read “adenocarcinoma.” Day’s gastroenterologist was on vacation.
After unsuccessfully trying to schedule a consultation Cancerous tumors of the esophagus, Days goes to a crowded emergency room and a specialist Day’s wife recalled that there was no privacy as doctors warned her loudly enough for passersby to hear that the cancer was incurable.
four A few weeks later, Day, a former Customs and Border Protection agent in Bangor, Maine, died at age 75. His family said: I had to go. To get an explanation for a cancer so serious.
“Getting medical results shouldn’t be like tracking a DoorDash order,” said Mike’s son, Andrew Day. “It’s unfair that information is being released without a proper discussion just to shock the family.”
The idea of medical transparency underlying the provisions of the 2016 Cures Act is widely supported, but implementation of regulations expanding access to medical records that came into force in 2021 has been more divisive.
Congress has shown little interest in the issue, with federal health officials sticking to their rules and arguing that concerns will be resolved as technology improves and clinics adjust the way they prepare patients for outcomes.
“There’s just a moral obligation on the patient’s part that this is their information. They should have access to it at all times,” said Mickey Tripathi, national coordinator for health information technology, who wrote the requirements for the Department of Health and Human Services. “They’re paying for it, too. They should get what they pay for.”
Some patients say they are now able to ask better questions, notice things their doctors miss and better manage their own care. But others panic when medical professionals interpret seemingly disturbing results as mundane.
Daniel Ofri, a primary care physician at Bellevue Hospital in New York City, To make sure she doesn’t leave her patients hanging, she dedicates an hour each day during her vacation to reviewing scans and calling patients who she knows have major health concerns. But these calls aren’t typically reimbursed by major insurance companies, and the time can add up quickly. In some cases, she consults with specialists before calling patients to better answer their questions and present a treatment plan.
At a recent appointment, the patient was I didn’t call after seeing the word cancer on the MRI scan results, but the report said there was no evidence of cancer. The word cancer is buried in medical jargon, The doctor could understand the confusion.
Such misunderstandings are not uncommon, Ofri says. Since notification requirements went into effect, he says he’s received a steady stream of messages from patients asking about clinically irrelevant test results. For example, a layperson looking at a blood count might be concerned if one item is out of normal range, but a doctor wouldn’t be concerned if the other items are normal. What appears to be a serious problem on a spinal radiology scan could just be normal wear and tear that comes with aging.
“Publicizing everything? That’s not transparency. That’s throwing the data away, and it’s really unfair to patients to just throw it away and sit back and do nothing,” said Ofri, who wrote about her experience in The New Yorker.
The American Medical Association is lobbying. Federal health authorities; Efforts to enact rules requiring doctors to contact patients within 72 hours before electronically communicating life-changing or fatal diagnostic results have failed, although California and Kentucky have carved out similar exceptions in recent state laws.
“This is another example of how we feel that other people who don’t know our patients are interfering with what is really a sacred doctor-patient relationship,” said Jack Resneck, a former president who led the medical association’s advocacy efforts on the issue.
But there are exceptions It’s similar to The one adopted in California has had unintended consequences. Scott McDonald, attending physician and chief medical information officer for the UC Davis Health System; He said the health system is forgoing most scans that could theoretically detect cancer, even if the tests are ordered for other issues.
One of McDonald’s patients didn’t receive timely results from an MRI for a torn meniscus in his knee, and his wife had to wait days for scan results to confirm her breast cancer had not spread.
“I’m not a paternalistic physician, so I feel the anxiety of waiting for test results is greater than the anxiety of hearing results that are difficult to hear,” MacDonald said.
Experts say more research is needed to understand how patients will respond to expanded access to their medical records and how it will affect their health. In a survey of more than 8,000 patients across four medical institutions, 96% of patients said they wanted their results immediately, even if their provider hadn’t reviewed them. And 7.5% of respondents said reviewing their results before speaking with their doctor increased their anxiety.
Some experts say the survey results are Respondents chose to complete the survey and are therefore a voluntary group and are not representative of the entire U.S. patient population. The proportion of white people was also disproportionately high.
Patients would likely be less worried if their health care providers explained in advance why they were doing the test and what the test would look for, said Kate Desroches, executive director of Open Notes, a research initiative affiliated with Harvard Medical School, which worked on the study.
Organization She is preparing a new study that will focus on the experiences of cancer patients whose test results can be life-changing.
“We sometimes underestimate what patients can tolerate,” said Desroches, an associate professor of medicine at Harvard Medical School. “On the one hand, we have oncologists who say, ‘This is an issue, every cancer is different,’ but on the other hand, we hear from cancer patients that they want their test results at home so they can think about it, process it, discuss it with their family, and be prepared to discuss it with their doctor. If I get bad news during a consultation, I don’t want to hear anything else they tell me.”
For Loriana Hernández Aldama, a survivor of acute myeloid leukemia and breast cancer who struggled with post-traumatic stress disorder, seeing instant test results has given her peace of mind. She said she wanted to see her medical records for herself because doctors had ignored her and given her inadequate information after her near-death experience.
“For me, it was like marching orders. I read it, acted on it and started researching,” Hernandez said.–Ms. Aldama, 51, of Peachtree City, Georgia, received test results last year that showed a lesion in her stomach that could be stomach cancer. “I told my husband, ‘That’s it. Our kids don’t have a mother.'”
As it turned out, the lesion was nothing serious. Her husband, Cesar Aldama, saw his wife’s growing anxiety when test results were inconclusive, so he begged her not to check the patient portal between appointments.
“She’s very knowledgeable, but she’s not a doctor,” Aldama said. “I’m trying to not have anxiety attacks. … Am I successful? Not very successful.”
Aldama believes the solution isn’t to take away his wife’s right to see her test results, but to create more leadership resources in the health care system.
Grace Cordovano, a patient advocate, said one of the best ways to ease anxiety without burdening doctors is for insurers to pay health navigators who can prepare patients before they meet with their doctor. The Centers for Medicare and Medicaid Services has created a billing code that allows public insurers to pay for “major disease navigation,” which connects patients with cancer and other high-risk diseases to health and social care services.
Before medical records were easily accessible, patients had a hard time getting the paperwork they needed to seek a second opinion, participate in a clinical trial or schedule an appointment with a specialist, Cordovano said.
“I work with patients who have an hourglass and the sands of time flowing against them,” Cordovano said.
LC Osadchuk, who survived the aftermath of Cushing’s syndrome, a hormone disorder, said rare disease patients rely on quick access to test results to manage their health because few medical providers understand the complexities of their condition.
She must take steroids and other medications, undergo comprehensive metabolic testing every week, and undergo monthly blood tests to track her electrolyte and cortisol levels, which can fluctuate rapidly and have adverse effects.
When his adrenal glands were first removed, Osadchuk sometimes waited as long as two days for a phone call from a doctor to hear the results, which might require him to stay in hospital and receive fluids and large doses of hydrocortisone and vitamins.
No waiting period means she can easily maintain her athletic lifestyle, competing in ultramarathons and motocross bike races, which she can take part in if her test results are normal, rather than err on the side of caution.
“Waiting for the test results was just agonizing,” said Osadchuk, 46, of Bellingham, Wash. “The stress of, ‘Ahhhh!’ It was like I was killing myself four times.”
Aaron Gregg contributed to this report.
