What Does the 'Open Notes' Mandate Mean for Cancer Care?
- A new law that went into effect April 5 requires healthcare providers to share notes & test results with patients via an online portal.
- The law does not require doctors to change the language used in their notes, but there are some helpful tools patients can use to understand notes.
- Studies show that many patients only remember half (or less) of what they discuss during a doctor visit — the ‘open notes’ mandate can change that.
A new law that went into effect this week requires healthcare organizations to provide patients with free, full and immediate access to their doctor’s clinical notes, as well as test results and pathology and imaging reports. This means patients can view their records promptly through an online portal — and could mean a world of difference when waiting for important test results like bloodwork and scans.Read More
It seems like a major turning point when it comes to transparency — but what does this new legislation mean for cancer patients?
Cancer survivor and advocate Liz Salmi, who also happens to be senior strategist for OpenNotes, a movement dedicated to more transparency in health care, told SurvivorNet reading doctor notes can make a big difference in how much people dealing with cancer retain after a medical visit.
During Medical Visits
Amount of information retained after cancer diagnosis
OpenNotes Senior Strategist
“Most people with cancer love to read their visit notes,” Salmi said, noting that when a person is dealing with a tough diagnosis during a doctor visit, it can be hard to retain much of the information the doctor is giving.
“At most, if someone is getting bad news, they’re only going to remember about 30% of that visit.”
What Does ‘Open Notes’ Mean?
This new mandate is often referred to as the “open notes” law, but the new legislation does not require doctors to change their note taking style. It simply requires them to provide patients with access to those notes in a timely manner — and there are some exceptions.
Some healthcare systems are directing doctors to make their notes more patient-friendly now that access is required. Some systems — like MD Anderson Cancer Center and the Mayo Clinic — had already been requiring doctors to provide notes.
Salmi, who was diagnosed with a malignant brain tumor at age 29, said that what “immediate access” means may vary depending on your doctor.
“It might be the moment a doctor signs off … some organizations might say [to submit notes] by the end of the day,” she said. “It could be immediate to a few hours.”
She noted that having that access to scans and tests is particularly important for people facing cancer — and can actually lead to patients trusting their doctors more.
“Reading the notes helps improve trust between doctors and patients … Many people will take that visit note and they’re likely to share it with someone else who is involved in their care.”
Having access to records of the visits and observations physicians made can provide comfort and clarity to patients during times when stress may otherwise be high.
What Notes Must be Shared?
There are eight types of clinical notes that must be shared, according to the new law. These are:
- Consultation notes
- Discharge summary notes
- History and physical
- Imaging narratives
- Laboratory report narratives
- Pathology report narratives
- Procedure notes
- Progress notes
For cancer patients dealing with nail-biting moments waiting for a call from their doctor for imaging or pathology reports, this new ruling can provide much-needed clarity.
Which Notes Will Remain Private?
There are some exceptions to the rule. Some psychotherapy notes, for example, that are separate from the rest of an individual’s medical record and recorded by a mental health professional in a private counseling session are not required to be shared.
There are some other exceptions related to preventing harm, privacy and security — but for the most part, patients can expect their medical records to be shared with them in a timely manner going forward.
Salmi noted that there will be some patients who prefer not to look at the results of certain tests before speaking to their doctors, but said the new mandate adds a element of “human choice” to health care — “the power to know as much as you want to know.”
Why Do ‘Open Notes’ Matter?
Research shows that people tend to only remember about half of what they discuss with their medical providers during a typical visit, according to opennotes.org, and even less when the visit is stressful. Having access to your records is a great way to make sure you are staying on top of any health problems.
For cancer patients in particular, you’re often getting a lot of information during visits to the oncologist — especially in the early stages after a diagnosis.
In a previous conversation with SurvivorNet, colorectal cancer surgeon Dr. Heather Yeo explained that patients can — naturally — get really overwhelmed during those first conversations about the disease.
Dr. Heather Yeo shares some guidance on how to handle those first few conversations about cancer.
“If I’m the first person to tell a patient they have cancer, and I have about a half an hour to talk to them about all of these things — about the surgery, about the fact they have cancer, about the fact they might need chemotherapy, it’s a lot of information at once,” Dr. Yeo said.
“So, I think it’s really important for them to be able to hear it multiple times, to take notes. Oftentimes, if a patient doesn’t have a family member with them, I’ll offer to call their family members afterwards because you can hear something from your surgeon and not remember the details.”
Understanding Doctor Notes
The open notes mandate, ideally, should make this process a lot easier. One caveat may be the medical language that doctors use when taking notes. However, the internet — if you know where to look — can be helpful if you’re unsure what something in your notes means. Here is a handy list of abbreviations medical professionals often use in notes.
There was some concern that giving patients more access would lead to confusion and unnecessary stress if people don’t understand what their doctors wrote down — but Salmi said these situations are rare.
“We’ve been studying this concept for over 10 years,” she said. “Over 100 published studies on this concept … show 95-99% of patients — when they read their doctor’s notes — say that they understand this information.”
“If there’s a word or phrase they don’t understand, they go online and look it up.”
Access to notes should also empower patients to strike up conversations about problems or procedures that they want more information about with their doctors.