More Americans are learning of devastating health diagnoses through their phones and computers instead of personally from their doctors because of a federal requirement that people receive immediate access to medical test and scan results, from routine bloodwork to MRIs.
This shift has sparked a debate in the medical community about whether instant information empowers patients or harms them.
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The new medical landscape resulting from a bipartisan law promoting transparency has exposed fault lines in a stressed health-care system where the promises of technological advancements are undercut by the heavy workloads foisted on medical professionals.
As more people receive troubling results online at the same time as their doctors — often waiting days or weeks for treatment plans — medical associations have been pushing to give doctors more time to release records revealing cancer and other grim diagnoses so patients don’t have to bear the news alone.
Mike Day’s cancer diagnosis arrived while he lounged in his living room recliner last summer. His wife, a former registered nurse, spotted “adenocarcinoma” in biopsy results posted to his electronic patient portal. His gastroenterologist was on vacation.
After unsuccessfully trying to make an appointment to discuss the cancerous tumor in his esophagus, the Days went to a crowded emergency room where he lay on a stretcher in a hallway while a specialist discussed his prognosis. There was no privacy as the doctor, speaking loudly within earshot of passersby, warned the cancer was incurable, Day’s wife recalled.
Four weeks later, Day, a retired U.S. Customs and Border Protection agent in Bangor, Maine, died at age 75. His family is astounded by how much trouble they had to go through to get an explanation for a cancer that serious.
“Getting medical results shouldn’t be like tracking a DoorDash order,” said Andrew Day, Mike’s son. “It’s unconscionable that information is out there to just gobsmack a family without having a proper conversation about it.”
The idea of medical transparency undergirding provisions in the 2016 Cures Act is broadly supported. But implementation of the regulations expanding access to medical records, which took effect in 2021, has been more divisive.
Congress has taken little interest in this issue, and federal health officials have stood by the rules, arguing that concerns will be resolved as technology improves and as medical practices adjust how they prepare patients for results.
“There is just a moral imperative here, which is for patients, this is their information. They ought to be able to access it whenever they want,” said Micky Tripathi, the national coordinator for health information technology whose office crafted the requirement for the Department of Health and Human Services. “They also pay for it. They ought to be able to get things they pay for.”
Some patients say they’re now equipped to ask better questions, notice things their doctors do not and better manage their own care. Others panic over results that appear alarming but are mundane when interpreted by a medical professional.
Danielle Ofri, a primary care physician at Bellevue Hospital in New York, carves out about an hour a day on her vacations to review scans to avoid leaving patients hanging and makes time to call the patients she knows have greater health anxiety. But such calls are not usually reimbursed by major insurance plans, and the time can quickly add up. In some cases, she consults specialists before calling the patients to better answer their questions and present a treatment plan.
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During a recent appointment, a patient was upset that Ofri didn’t call after seeing the word carcinoma in the results of an MRI scan. But the report actually said there was no evidence of carcinoma, a word buried in enough medical jargon that the doctor could understand why there was confusion.
Such misunderstandings aren’t unusual, she said. Since the notification requirements went into effect, Ofri said, she has received a constant flow of messages from patients asking about clinically irrelevant lab results. For example, a lay person reviewing a complete blood count test could be worried by a single component outside the normal range, but a doctor wouldn’t fret as long as other parts of the test came back normal. What could look like a serious issue on a radiology scan of the spine could be the normal wear and tear of aging.
“Putting it all out there? That’s not transparency. That’s a data dump, and it’s really not fair to patients to throw it out there and wash your hands of it,” said Ofri, who wrote about her experiences for the New Yorker.
The American Medical Association has been lobbying federal health officials, unsuccessfully, to adopt a rule providing physicians 72 hours to reach patients before electronically releasing life-altering results or deadly diagnoses. California and Kentucky have enshrined similar exceptions in recent state laws.
“It’s one more instance in which we feel like there are other people who don’t know our patients who are getting in the way of that really sacred doctor-patient relationship,” said Jack Resneck, the medical association’s former president who led the group’s advocacy on the issue.
But exceptions similar to those adopted in California have resulted in unintended consequences, said Scott MacDonald, a primary care physician and chief medical information officer for the University of California at Davis health system. The health system withholds almost any scan that could theoretically show cancer, even if they were ordered for other issues, he said.
One of MacDonald’s patients couldn’t immediately receive results from an MRI of a torn meniscus in his knee, and his wife had to wait days for a scan that confirmed her breast cancer did not metastasize.
“I’m not a paternalistic physician, and I feel the anxiety of waiting to hear the test result can be more than the anxiety of hearing a result that’s difficult to hear,” MacDonald said.
Experts say more research is needed to understand how patients are reacting to greater access to their medical records and the effects on their health. A survey of more than 8,000 patients at four medical institutions found that 96 percent wanted immediate results even if their provider hadn’t reviewed the results. And 7.5 percent of respondents said reviewing the results before talking to a doctor increased their worry.
Some experts say the study’s findings should be tempered by the fact that respondents were a self-selecting group because they opted to complete the survey and did not represent U.S. patients overall. Respondents were also disproportionately White.
Cait DesRoches, executive director of OpenNotes, a research initiative affiliated with Harvard Medical School that was involved in the study, said patients would worry less if their health provider explained in advance why they’re conducting the test and what they might see.
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The organization is preparing a new study that focuses on the experiences of cancer patients, for whom test results can be life-changing.
“Sometimes we underestimate what patients can handle,” said DesRoches, an associate professor of medicine at Harvard Medical School. “For every oncologist we heard from saying this is a problem, cancer is different, we heard from patients with cancer saying I would rather get my results at home where I can think about it, process it, discuss it with my family and be ready to have a conversation with the provider. If I hear bad news during a visit, then I don’t hear anything else that person tells me.”
Loriana Hernández-Aldama finds comfort in seeing instant test results after surviving acute myeloid leukemia and breast cancer, which she said left her with post-traumatic stress disorder after the near-brushes with death. Having been treated dismissively and given partial information by some doctors, she said she would prefer to see her medical records herself.
“For me, it’s been like marching orders. I read it, I run with it, start researching it,” said Hernández-Aldama, 51, of Peachtree City, Ga., who received a result about a lesion on her stomach last year that she had interpreted as possible stomach cancer. “I said to my husband: ‘I’m done. Our kid is not going to have a mother.’”
The lesion ended up not being a big deal. Her husband, Cesar Aldama, pleads with her to avoid checking the patient portal between appointments because he sees her anxiety rising when test results are unclear.
“She is knowledgeable, but she’s not a doctor,” Aldama said. “I’m trying to derail any anxiety attacks. … Am I successful? Not often.”
Aldama believes the solution is not to take away his wife’s right to see her results, but to have more people in the health-care system who can offer guidance.
Grace Cordovano, a patient advocate, said one of the best ways to ease anxieties without overwhelming doctors is for insurers to pay health navigators who can prepare patients before they meet with a physician. The Centers for Medicare and Medicaid Services created billing codes to allow the public insurers to pay for “principal illness navigation” to connect patients with cancer and other high-risk conditions to health and social services.
Before medical records were readily accessible, Cordovano said, patients struggled to obtain the documents needed to get a second opinion, enroll in clinical trials or book appointments with specialists.
“I’m working with patients for whom the hourglass and sands of time are pouring against them,” Cordovano said.
L.C. Osadchuk, who navigates the aftermath of the hormonal condition Cushing’s syndrome, said people with rare diseases rely on immediate access to test results to manage their health because few providers understand the complexities of their conditions.
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She must take steroids and other medication and undergoes weekly comprehensive metabolic testing and monthly bloodwork to track her electrolyte and cortisol levels, which can fluctuate quickly to detrimental effect.
When her adrenal glands were first removed, Osadchuk would sometimes wait two days for a doctor to call with results that might necessitate fluid infusions at a hospital or receiving large doses of hydrocortisone or vitamins.
Removing that wait has made it easier to maintain an athletic lifestyle competing in ultramarathons and bicycle motocross races. She can participate if her test results are normal instead of erring on the side of caution and sitting out.
“Having to wait for those test results was just excruciating,” said Osadchuk, 46, of Bellingham, Wash. “You might as well have just killed me four times over because the stress was like, ‘Ahhhhh!’”
Aaron Gregg contributed to this report.
