“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.” [..]
Since the notification requirements went into effect, [Bellevue Hospital primary care physician Danielle] 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. [..]
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 of 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. [..]
“Sometimes we underestimate what patients can handle,” said [executive director of Open Notes Cait] 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.” [..]
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.”
Full article, F Nirappil, Washington Post, 2024.7.26