Fearing that some patients might freak out after seeing bad news in their electronic health portals before their doctors have reviewed results, some pathologists have adopted creative strategies.
They're trying to get the lab report's bad news to the treating physician first.
"One workaround I've heard about is that the pathologist picks up the phone and calls the treating physician who will receive the results," before it becomes an electronic record, Emily Volk, MD, president of the College of American Pathologists, told 鶹ý.
"I know some practices are attempting to give the doctor a heads-up" when a specimen analysis shows spreading disease, so they can prioritize a phone call to that patient before the patient goes into that portal. Patients can misunderstand, become confused, or think the end is near.
Of course, she said, "that adds work, it adds time to the already busy lives of physicians," Volk said, adding that her pathology practice has not adopted this strategy.
It also means they could "run the risk" of delaying the report and being in violation of the new rule, she acknowledged. What if the pathologist can't reach the doctor right away?
Volk was referring to the 21st Century Cures Act, which includes the rule that took effect April 5. It requires healthcare professionals to deliver to the patient's electronic portal the results of their tests and studies in as soon as they are electronically available, regardless of whether the physician has had a chance to read those results or talk with the patient about them, put them in context, and discuss further options for care.
If they delay, and a complaint is filed alleging they were engaging in information blocking, an investigation by the HHS Office of Inspector General or the Office of Civil Rights could result in financial "disincentives" imposed on that provider's practice.
Did Patient Harm Result?
While many healthcare professionals support the new rule as a way to give patients quick access to their health data -- instead of waiting for a call from their physician or getting the news during a return visit days or weeks later -- many think that the Office of the National Coordinator (ONC), which is administering the rule, hasn't thought through its negative effects.
One Texas doctor instigated a earlier this week with this Tweet: "To the Cures Act fans (allowing patients immediate access to their medical info, often even before their physician), we've now reached the point of pts misinterpreting it/Googling & taking their lives. As a result, pathologists are being asked by oncologists to obfuscate reports."
There is no evidence that any patients have died by suicide after reading bad news in their EHR. And Volk and other physicians said they have not heard that any pathologist has been asked to obfuscate test results, nor would they.
Barbara McAneny, MD, a former president of the American Medical Association who runs a large oncology clinic in Albuquerque, also said she hadn't heard of such a practice.
"I have not heard of anyone telling pathologists to be vague or obscure," she said.
Nor has she heard of any patients attempting to die by suicide after reading a report suggesting disease progression. "I have not heard that and none of our patients attempted suicide," she said, adding that, "We do have a lot of upset patients."
Confusion about how the rule should be implemented and how it is going to be enforced has prompted doctors to ask the ONC to give doctors the ability to delay posting the results by 24 to 72 hours, giving them a chance to get to the patient first.
"We're not talking about weeks. We're talking about hours to a day or two to give physicians a little time to actually reach out to a patient" who is getting bad news, said Jack Resneck, MD, president-elect of the American Medical Association, who criticized ONC's leaders for not being more specific about how the rule is being implemented and enforced.
"This rule is such a major change in the legal and regulatory framework for how we release information to patients," Resneck said. "Given the size of the change, I think ONC had a responsibility to really collaborate with the physician community with a strong educational outreach to help physicians and other clinicians and health systems know how to do this and comply with the law. We've been frustrated because there just hasn't been enough of that."
Patients Upset
Resneck emphasized that the AMA and many physicians around the country want patients to have their health information as quickly as possible -- and that some patients don't mind reading their electronic reports indicating their disease has spread "in the middle of the night when there's nobody to talk to about it."
"But there are other patients who don't want to be traumatized by that and we're hearing from those patients that they're very upset," he said.
While the ONC has clarified that physicians can simply ask their patients how they want to get their results, and delay release until the news comes first from the doctor with patients' consent, Resneck said that's unrealistic.
The ONC assumes "that we all have the technological capacity to tailor the timing of release to every patient's request," he said. "But we're not quite there yet." A few of the large electronic record companies are trying to adjust their programs to provide that option, "but there are many that have not."
McAneny's portal software, for example, does not have that capability. The option to release patients' lab reports "is either on or off" for all patients, and because of the Information Blocking rule, "it is on," she said.
Disincentives Undefined
Much about the rule, and how doctors and other providers should comply with it, is unclear.
For starters, the "disincentives" to discourage information blocking and the rule's enforcement dates, have yet to be defined in further rulemaking by the ONC.
ONC has narrowly defined the rule's criteria -- when a physician may legally delay release -- to apply only to circumstances where there might be physical harm to the patient or a family member. "We are frustrated," Resneck said.
"We are hearing from patients who have been harmed," but harmed emotionally and psychologically, rather than physically, he said.
Asked for a comment, an ONC spokesperson replied that the agency "continues to hear considerable positive feedback from clinicians and their patients who are benefiting from having the choice to have improved access to the electronic health information to which they are legally entitled and which they have paid for."
On the criticism that ONC has not engaged the physician community nearly enough, the spokesman pointed to a series of clinician-focused webinars, as well as updating in response to industry questions.
Resneck also wants the agency to clarify a number of other aspects of the rule that remain unclear, such as whether doctors who block parents and legal guardians from seeing the child's records, at the child's request, are guilty of information blocking.
Another concern is that , and perhaps other states, have laws that require doctors to delay release of certain records until the doctor has had a chance to review them with the patient. That's in direct conflict with the Information Blocking rule, which requires immediate release when the electronic records are completed.
"It would be incredibly useful if ONC would actually tell us how the law and regulations interact with state laws around the country, and provide a crosswalk," Resneck said.
An informal 鶹ý survey of physician organizations in the largest states did not produce any such regulations or codes.