What's in Your Doctor's Notes?
- As of April 5, 2021, your oncologists and other health care providers will be required to provide you with access to your doctors’ notes
- These notes include information about your medical history, physical exam, test results, and treatment plans
- Doctors’ notes aren’t written for patients, and they can sometimes be complex
- If you don’t understand your notes, ask your oncologist for clarification
Four years ago, Congress passed the 21st Century Cures Act, which required that patients have access to their medical records. Starting on April 5, 2021, your oncologist and other health care providers will have to make you privy to nearly all of the information in your electronic medical record, including the notes your doctors, nurses, and therapists write about your diagnosis and treatment. Being able to read this information can make you a more informed participant in your own cancer care – provided that you understand and use it in the right way.
Patients might see an abbreviation like SOB (which stands for “shortness of breath”) and be under the mistaken impression that their doctor is insulting them.
First, it’s good to know what you’ll find in your clinical notes. “The clinical notes are where we record everything involved in caring for the patient,” Dr. Howard P. Levy, MD, PhD, associate professor of medicine at Johns Hopkins University, tells SurvivorNet. “This includes the history of what happened leading up to the visit; the physical examination; pertinent test and imaging results, our thoughts about what is, isn’t, or might be going on; and our plans or recommendations for additional testing and/or treatment.”
Related: Having a PET/CT Scan? Here’s What to Expect
Under the new rules, providers are required to include eight types of notes:
- Consultation
- Discharge summary
- History & physical
- Imaging tests
- Lab reports
- Pathology reports
- Procedure notes
- Progress notes
Dr. Lawrence Piro explains how your doctor uses your pathology report to diagnose and treat your cancer
How Your Doctors’ Notes Can Help You
Getting treated for cancer can be overwhelming. During each visit, you and your doctor may cover any number of topics, including your treatment options, the benefits and risks of each treatment, how to take your medicines, what side effects they can cause, and what to do if you develop side effects.
Dealing with the side effects of cancer treatment
“It is hard for providers to remember everything we said during a visit – that’s why we write it down in our clinical notes. It is even harder for patients to keep it all straight,” Dr. Levy says. By having the information written down for you, it’s more likely that you’ll understand and follow your doctor’s recommendations. “That’s a win for everybody,” he adds.
Reviewing your doctor’s notes also gives you a chance to correct any mistakes or misunderstandings. “In some cases, especially around challenging issues like prognosis, there may be differences in the interpretation of what was intended vs. what was understood in a spoken conversation that was emotionally charged,” explains Dr. Jack West, associate clinical professor in medical oncology at City of Hope Comprehensive Cancer Center in the Los Angeles area. “A patient having the ability to access notes that discuss nuanced issues may offer a clearer record of the details.”
Related: Electronic Medical Records for Cancer Patients Provide Docs a More Complete Story: Everything You Need to Know
In a 2019 study, patients receiving radiation therapy for cancer were surveyed about their use of oncology notes. After reading their notes, 96% said they had a better understanding of their diagnosis and the same percentage said they felt better about their treatment. “Patients found that it was reassuring to have this information,” says Dr. Michael Steinberg, professor and chair of the Department of Radiation Oncology at the David Geffen School of Medicine at UCLA, and co-author of the study. “It was also helpful for them to explain to their family members.”
Another study found that having access to doctor’s notes helped patients feel more in control of their own care.
How to Access Your Notes
Once April 5 rolls around, your doctors will have to provide you with access to your notes. For now, you can get them through a patient portal like MyChart, or request them from your doctor’s medical records office. Once you gain access, you can download the notes and keep a copy to bring with you to medical appointments.
Can You Understand Them?
Doctors don’t write these notes to communicate with their patients. The purpose of clinical notes is to document your care for themselves, other medical providers who might treat you, and your insurance company. As a result, they can be chock full of medical terminology and details that are hard for anyone without a medical degree to decipher.
“There is certainly some risk that medical jargon will be difficult to understand, and we often see patients become alarmed by details such as an abnormal lab value,” Dr. West says. Another worry is that patients might see an abbreviation like SOB (which stands for “shortness of breath”) and be under the mistaken impression that their doctor is insulting them.
Related: 5 Well-Known Breast Cancer Survivors Share Lessons They’ve Learned During Their Journey
Clinical notes are often “long, overly detailed” and they fail to “communicate much useful information,” according to an opinion piece by Dr. Heather Gantzer published in the Annals of Internal Medicine. “Many of the current notes could be incredibly confusing for the patient. There is a tremendous need for improvement,” Dr. Gantzer, who is an internist at Park Nicollet Clinic in Saint Louis Park, Minnesota, tells SurvivorNet.
She adds that a well-written note can address complex medical ideas and “still convey the sense of what is going on,” while a poorly written one could potentially offend a patient or cause them unnecessary worry.
Fortunately, research that has been done so far hasn’t shown any evidence of harm from patients misinterpreting their doctor’s notes. “In fact, it is the opposite – there is evidence that having access to notes increases the frequency of taking medications correctly,” Dr. Levy says.
If You Don’t Understand, Ask!
If you don’t understand something your doctor has written, ask. Bring your questions to your next appointment, call the office, or send your doctor a note in MyChart.
When you use your medical notes in the right way, getting clarification when you need it, they can be a real asset during your cancer treatment. Dr. Levy, who is a cancer survivor himself, says he read his own chart during his diagnosis and treatment. “I found it immensely reassuring to be able to go back over everything and make sure my providers understood me and I understood them. Everyone deserves to have that same level of access.”
Learn more about SurvivorNet's rigorous medical review process.
What's in Your Doctor's Notes?
- As of April 5, 2021, your oncologists and other health care providers will be required to provide you with access to your doctors’ notes
- These notes include information about your medical history, physical exam, test results, and treatment plans
- Doctors’ notes aren’t written for patients, and they can sometimes be complex
- If you don’t understand your notes, ask your oncologist for clarification
Four years ago, Congress passed the 21st Century Cures Act, which required that patients have access to their medical records. Starting on April 5, 2021, your oncologist and other health care providers will have to make you privy to nearly all of the
information in your electronic medical record, including the notes your doctors, nurses, and therapists write about your diagnosis and treatment. Being able to read this information can make you a more informed participant in your own cancer care – provided that you understand and use it in the right way.
Patients might see an abbreviation like SOB (which stands for “shortness of breath”) and be under the mistaken impression that their doctor is insulting them.
Read More First, it’s good to know what you’ll find in your clinical notes. “The clinical notes are where we record everything involved in caring for the patient,”
Dr. Howard P. Levy, MD, PhD, associate professor of medicine at Johns Hopkins University, tells
SurvivorNet. “This includes the history of what happened leading up to the visit; the physical examination; pertinent test and imaging results, our thoughts about what is, isn’t, or might be going on; and our plans or recommendations for additional testing and/or treatment.”
Related: Having a PET/CT Scan? Here’s What to Expect
Under the new rules, providers are required to include eight types of notes:
- Consultation
- Discharge summary
- History & physical
- Imaging tests
- Lab reports
- Pathology reports
- Procedure notes
- Progress notes
Dr. Lawrence Piro explains how your doctor uses your pathology report to diagnose and treat your cancer
How Your Doctors’ Notes Can Help You
Getting treated for cancer can be overwhelming. During each visit, you and your doctor may cover any number of topics, including your treatment options, the benefits and risks of each treatment, how to take your medicines, what side effects they can cause, and what to do if you develop side effects.
Dealing with the side effects of cancer treatment
“It is hard for providers to remember everything we said during a visit – that’s why we write it down in our clinical notes. It is even harder for patients to keep it all straight,” Dr. Levy says. By having the information written down for you, it’s more likely that you’ll understand and follow your doctor’s recommendations. “That’s a win for everybody,” he adds.
Reviewing your doctor’s notes also gives you a chance to correct any mistakes or misunderstandings. “In some cases, especially around challenging issues like prognosis, there may be differences in the interpretation of what was intended vs. what was understood in a spoken conversation that was emotionally charged,” explains Dr. Jack West, associate clinical professor in medical oncology at City of Hope Comprehensive Cancer Center in the Los Angeles area. “A patient having the ability to access notes that discuss nuanced issues may offer a clearer record of the details.”
Related: Electronic Medical Records for Cancer Patients Provide Docs a More Complete Story: Everything You Need to Know
In a 2019 study, patients receiving radiation therapy for cancer were surveyed about their use of oncology notes. After reading their notes, 96% said they had a better understanding of their diagnosis and the same percentage said they felt better about their treatment. “Patients found that it was reassuring to have this information,” says Dr. Michael Steinberg, professor and chair of the Department of Radiation Oncology at the David Geffen School of Medicine at UCLA, and co-author of the study. “It was also helpful for them to explain to their family members.”
Another study found that having access to doctor’s notes helped patients feel more in control of their own care.
How to Access Your Notes
Once April 5 rolls around, your doctors will have to provide you with access to your notes. For now, you can get them through a patient portal like MyChart, or request them from your doctor’s medical records office. Once you gain access, you can download the notes and keep a copy to bring with you to medical appointments.
Can You Understand Them?
Doctors don’t write these notes to communicate with their patients. The purpose of clinical notes is to document your care for themselves, other medical providers who might treat you, and your insurance company. As a result, they can be chock full of medical terminology and details that are hard for anyone without a medical degree to decipher.
“There is certainly some risk that medical jargon will be difficult to understand, and we often see patients become alarmed by details such as an abnormal lab value,” Dr. West says. Another worry is that patients might see an abbreviation like SOB (which stands for “shortness of breath”) and be under the mistaken impression that their doctor is insulting them.
Related: 5 Well-Known Breast Cancer Survivors Share Lessons They’ve Learned During Their Journey
Clinical notes are often “long, overly detailed” and they fail to “communicate much useful information,” according to an opinion piece by Dr. Heather Gantzer published in the Annals of Internal Medicine. “Many of the current notes could be incredibly confusing for the patient. There is a tremendous need for improvement,” Dr. Gantzer, who is an internist at Park Nicollet Clinic in Saint Louis Park, Minnesota, tells SurvivorNet.
She adds that a well-written note can address complex medical ideas and “still convey the sense of what is going on,” while a poorly written one could potentially offend a patient or cause them unnecessary worry.
Fortunately, research that has been done so far hasn’t shown any evidence of harm from patients misinterpreting their doctor’s notes. “In fact, it is the opposite – there is evidence that having access to notes increases the frequency of taking medications correctly,” Dr. Levy says.
If You Don’t Understand, Ask!
If you don’t understand something your doctor has written, ask. Bring your questions to your next appointment, call the office, or send your doctor a note in MyChart.
When you use your medical notes in the right way, getting clarification when you need it, they can be a real asset during your cancer treatment. Dr. Levy, who is a cancer survivor himself, says he read his own chart during his diagnosis and treatment. “I found it immensely reassuring to be able to go back over everything and make sure my providers understood me and I understood them. Everyone deserves to have that same level of access.”
Learn more about SurvivorNet's rigorous medical review process.
