This wasn’t the way Laurette Bennhold-Samaan wanted to learn she had breast cancer: alone and logging onto her medical portal to see the words “invasive ductal carcinoma.”

Stunned, the 62-year-old from Arlington, Va., called her doctor. “I’m sorry you’re giving me the information I should be giving you,” she recalls her doctor saying.

People are now often getting medical information from portals and electronic health records directly, without it first being filtered by their doctor. The information includes CT scans, biopsies and several other types of potentially life-altering results. It’s coming to them directly because of a provision in legislation mandating that patients receive health information without delay.

Doctors say the law’s intent is good but that in practice, raw test results can spark confusion at best and panic at worst. Sometimes, patients misinterpret harmless information. Other times, people receive bad news without an explanation that could cushion the blow.

“There is tremendous potential for harm with the release of some types of tests to patients without providing some type of clinical context,” says Dr. David Gerber, a Dallas-based oncologist.


Laurette Bennhold-Samaan of Arlington, Va. PHOTO: LAURETTE BENNHOLD-SAMAAN
Gerber said he’s had patients learn about a cancer diagnosis from a smartphone notification in the middle of a business dinner, while reading a bedtime story to a 3-year-old, and during a rush-hour commute. One patient’s spouse went to the emergency room for an anxiety attack after misinterpreting her husband’s CT scan.

Earlier this year, Gerber testified before Texas legislative committees on behalf of the Texas Medical Association in support of a bill that would give healthcare providers 72 hours to contact patients before test results related to cancer or genetic diseases are released to them. The bill wasn’t signed into law but is expected to be revisited during a special session. Similar legislation is in place in Kentucky and California.

Why it’s happening
The push to release information goes back to a broad law called the 21st Century Cures Act, which streamlined drug development and designated money for medical research, among other things. It included a provision that went into effect in 2021 that requires that patients receive health information without delay. The aim was to make sure that patients had easy, immediate access to their health records.

This month, the federal government started enforcement of that requirement, with penalties of up to $1 million for technology developers and networks found to be in violation. Other penalties are being developed for doctors and hospitals who violate the law.

SHARE YOUR THOUGHTS
Would you prefer to opt out of seeing lab tests before your doctor does? Join the conversation below.

While doctor groups are generally supportive of the law’s intent, they say it has led to unnecessary patient anxiety.

“Sometimes the pathology or radiology result can look worse than it is,” says Dr. Jack Resneck, chair of the department of dermatology at the University of California, San Francisco, and a former president of the American Medical Association. “A physician can read between the lines and put it all in context.”

In theory, patients should be able to opt out of receiving such information, but Resneck says some electronic health-record vendors don’t have the technology or capacity yet to enable them to do so. “The rules kind of got ahead of the technology,” he says.

When doctors look at lab results, like complete blood counts, they’re looking at many different things, says Dr. Sterling Ransone, a family physician in Virginia and board chair of the American Academy of Family Physicians. One marker being off doesn’t necessarily mean something is amiss.

Ransone says he recently had a patient who tested positive for basal cell carcinoma. Though it’s a diagnosis of cancer, it’s a type of skin cancer that grows locally and can be treated surgically.

“They basically saw cancer and absolutely freaked out not knowing that it was a very easily treatable cancer that’s not going to need chemotherapy or radiation,” he says.

Studies about whether patients actually want to see medical information before their doctors call them have yielded mixed results. A March 2023 study in the medical journal JAMA Network Open found that 95% of more than 8,000 people surveyed preferred receiving their test results online immediately, even if their healthcare practitioner hadn’t reviewed them yet.

However, nearly 43% of 1,000 people in an AMA survey last year said they want their physician to review test results before they show up in a portal. Among those who didn’t want a physician to review results first, 54% said if the results were about a debilitating or terminal illness they would want a doctor to review and contact them first.

What you can do
Before you have tests done, ask your doctors what they’re looking for and if there is any marker or number you should pay attention to.

If you’re prone to anxiety, especially over health issues, consider waiting to look at your results until you can reach your doctor’s office. If you do look at them, don’t panic or go down a Google rabbit hole. Labs that are out of range may actually be OK.


Cynthia Lenert waited until her doctor’s appointment to learn of her CT scan results. PHOTO: MELISSA JONES
“A lot of times something might look ominous on a report, but it may not be ominous, or it may be something that’s been consistent for a long time,” says Christopher Scuderi, a family physician in Jacksonville, Fla.

Cynthia Lenert, a 69-year-old in Pottsboro, Texas, has lung cancer and gets regular CT scans of her lungs to monitor progress. She got a scan on a Friday in June and was surprised later that day to see that the results were already in her health portal.

“I did not look at it,” she says. “I didn’t want to put more anxiety on myself because I knew I’m not going to know what I’m looking at and all these medical terms.”

She already had an appointment to see her doctor, Gerber, on Monday. She learned the scan results were good. “They should let the doctor see the results first before the patient gets them,” she says.



LINK; https://sigforum.com/eve/forum...470024305#5470024305

So far I’ve found it helpful so I have time to look into what it might mean so I can ask more focused questions.

As long as it doesn't say, "CALL AMBULANCE IMMEDIATEY" in big red letters, I'm good with it.

quote:

People are now often getting medical information from portals and electronic health records directly, without it first being filtered by their doctor. The information includes CT scans, biopsies and several other types of potentially life-altering results. It’s coming to them directly because of a provision in legislation mandating that patients receive health information without delay.

More information is better.
No one is forcing the patient to view these results. If they want to wait and talk to the doctor, they can.

quote:

Originally posted by 220-9er:
So far I’ve found it helpful so I have time to look into what it might mean so I can ask more focused questions.

Or, you could take the wishy-washy radiology cut&paste literally as the worst case scenario, freak out, declare yourself almost dead and start crying.
My wife has done this twice in the last month & neither result was even brought up by her Dr & when asked directly 'yeah, that's good' was the response.

My wife just found out she had a faulty diagnosis from a pathology test and seeing it before the doctor helped us question that and get a second diagnosis.
She was already scheduled for a PET scan that was done and ultimately unnecessary.

quote:

You’re Seeing Medical Test Results Before Your Doctor Does. Why?

Nothing wrong with it. A little exaggeration here, but a patient will basically camp out at the laboratory's website refreshing it every 5 minutes for his/her resuts. The doctor has tons of results and other patient care related tasks. It's unrealistic to expect him to call you the instant the results are made available. Much ado about nothing.

quote:

Originally posted by pace40:
As long as it doesn't say, "CALL AMBULANCE IMMEDIATEY" in big red letters, I'm good with it.

Make final arrangements would be worse.

Not seeing why this is such a big deal?

If you are the first to see you have Cancer then you have other problems than letting the Doc let you down gently, IMO.

My wife and I do this all the time.

We find early lab info to be very useful.

Unexpected results trigger us to do a deep dive into the test. This really preps us for when we talk to a doctor

quote:

Originally posted by smschulz:
Not seeing why this is such a big deal?

Agreed. I recently got test results a couple of days before seeing my doc. It gave me the opportunity to be ready for my visit and ask questions as opposed to sitting there trying to absorb the information and just saying "Okay, ... um-hum, okay ..."

I see nothing wrong with it, in fact it causes physicians to keep up on the review of tests for patients.

Had my echocardiogram yesterday, asked about when it would be reviewed and he said policy was the physician would have immediate access, and, he would take up to 48 hours to review them.

Logged in to see what if anything was posted yet, which is nothing but it does pop up a message you have to acknowledge, screen shot the message.

I would imagine it's in response to the new enforcement of the 2021 law and to protect the physician and practice from any lawsuits from the Civil Vultures that scour new laws for potential new cash cow lawsuit advertising.

I am in favor of that with one exception. In case of a Cancer diagnosis it is much better to hear the news from the doc along with possible treatment suggestions. It is not to soften the blow but rather present treatment options.

I prefer to get and read results as soon as they are available.
This is the message I get when going to the test
results of My Chart.


Test Results

As part of the 21st Century Cures Act, we are required to release all lab and test results immediately. Click to learn more.
This means you may see your results in MyChart prior to them being reviewed by your provider. These reports can contain words that are hard to understand and/or show unexpected results. Rest assured, your provider will review the results and will discuss with you either in person, by video visit or phone. If you are concerned about the outcome of your results, we recommend that you do not view your results until contacted by your provider. This may alleviate unnecessary stress, as some results may be difficult for patients to interpret correctly. If you have a concern that cannot wait, please send a message through MyChart or call your clinic to discuss.

As long as I do not see the phrase, "test results are incompatible with life", I am good.

I have no idea of what kind of phrasing they would use if the results were bad, but they weren’t gonna tell you exactly what they were.

“Your life is gonna suck”

quote:

Originally posted by Patrick-SP2022:
As long as I do not see the phrase, "test results are incompatible with life", I am good.

"Don't buy green bananas." would also be bad.

I thought it was weird the first time. I currently have liver cancer. It is a C.U.P. (unknown primary) Right now I am awaiting pathology results from surgery. This gives me the chance to dig into my issue and ask the right questions when I meet with the Doc. The only problem is googeling eyery third word to see what it means. I am ok with it, some people may not be. You easily be overwhelmed with information andcan go to a dark place pretty quickly.

I can see situations where it would be undesirable for the patient to find out before talking to the doc. A lot of people will go to the internet to research what it might mean, and then get all worked up about it. Pretty much anything has a terrible possibility even if 99.999% of patients it is a minor thing.

Having said that, I really like being able to see my detailed results online. PSA is one I track carefully because of a family history. Docs frequently dumb down or gloss over the details. I want to know those details so I can see trends.

Docs should tell patients ahead of time not to look at or at least not to panic if they do see the test results online. If they're doing something like a biopsy because there is a major concern, the patient should be informed that the test results need to be evaluated by the doc before they will have any meaning.

I really like getting the results of my blood work right before my yearly physical. It gives me a chance to ask questions I may not have known to ask when I see the dr. Sometimes I have them before the dr. does and give her the results.