Importance of Comprehensive Medical Records
- Thorough medical records keep all members of your care team on the same page, in real-time
- Federal laws protect the privacy and security of your information, even in this electronic age
- A comprehensive medical record lowers risk for medical errors and unnecessary (or incorrect) care
"A thorough health record will ensure that care is seamless and can help determine future management based on prior care," says Dr. Allen Ho, MD, Director of the Head and Neck Cancer Program at Cedars-Sinai in Los Angeles. "It will also minimize the time a doctor spends shuffling through incomplete records and allow them to spend more time with the patient."
Information & Records Your Oncologist Needs
Before your first appointment, the people taking care of you begin gathering information for your medical record. They might call or email asking you to sign a form that gives your other health care providers (past or present) permission to release your records to them. They’re going to want:- Past lab results
- Images from x-rays, MRIs, CTs or other scans
- Pathology reports and slides from biopsies
- Any other records that might offer more insight into your condition
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Depending on where you get your care, and where you've received care in the past, you might have to make the arrangements for your doctors to send your records to your current care team. In some cases, you may need to pick up and drop off the file yourself.
Your oncology team is also going to need a complete list of all the medications you take. That’s not only prescriptions but also vitamins, supplements and other over-the-counter products. They’ll want to know how much of each you take, too. Some cancer medications could have a bad interaction with something you’re taking right now so your providers will want to know, up front, what’s in your daily medication regimen. They might even ask you to bring all your medication bottles with you to the first appointment rather than have you try to write down (or remember!) all the drug names and doses.
At your first appointment, you’ll answer a lot of questions about your medical history to make sure your records didn’t leave anything out. You’ll talk about:
- Past major illnesses and surgeries
- Current or ongoing health conditions
- Allergies
You'll also answer questions about cancer in your family. Take some time before your appointment to find out if any close relatives have had cancer, what type, how old they were, and what the outcome was.
It’s likely you will also be asked to tell your “cancer story.” You might want to review this in your mind, or write it down before the appointment, to make sure you include the following milestones and when they happened:
- What symptoms prompted you to get checked out in the first place
- Any other symptoms you've had since then
- What tests you've had and the results
- Any other specialists you've seen
Is My Information Safe?
Most if not all cancer centers capture your health information in an electronic medical record. This allows your providers within the cancer center (or health care system) to easily share it with each other. This is crucial so that everyone taking care of you is on the same page. But, don’t worry, they can’t share it with anybody outside the facility without your written permission. People who have access to your records are required to protect them under the federal Health Insurance Portability and Accountability Act of 1996 — or HIPAA.
"Some people may be concerned that EMRs (electronic medical records) are less secure than paper records. But, it is worth noting that in addition to HIPAA privacy rules, there is a HIPAA Security Rule that requires specific protections to safeguard electronic health information," says Monica Bryant, a lawyer and COO of Triage Cancer, a Chicago-based organization that educates patients on legal issues related to living with cancer.
The security rule requires health systems to put in extra safeguards of your information, such as password protection, encryption and other barriers. The law also says that the health system has to tell you about any security breaches.
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Of course, when it comes to storing information in computers, there’s always the chance of a security breach. But, studies show that they are very rare. The Journal of the American Medical Informatics Association says that data breaches affect about one in 100,000 patient records.
Your Records: Important to Remember
The beauty of an electronic medical record is that you usually have direct access to it, or some part of it, through an online portal. That’s a good thing. Portals let you message your caregivers and usually get a quick reply. You can also see test results without waiting till your next appointment. But keep this in mind: Sometimes "abnormal" test results can cause you a lot of unnecessary anxiety when you review them alone and don't have a health care provider available to provide an immediate explanation.
"It's hard not to get anxious," says Nina Shah, MD, a hematologist at the UCSF Comprehensive Cancer Center. "More than half the time, 'abnormal' results, especially on laboratory values, are not urgent. Try to remember that this is just data and the interpretation of that data is best done through a partnership between you and your doctor."
But, don't be afraid to look up your results on your own between appointments, says Jorge Nieva, MD, a medical oncologist at Keck Medicine of USC in Irvine. Then prepare a list of questions for your next doctor visit. "Coming prepared with questions is a great way to educate yourself and increase understanding of your illness. This leads to better treatment decisions and a better relationship with your doctor."
Benefits Outweigh Risks
"The biggest risk related to health records is not having them" or having incomplete or incorrect records, says Nieva.
When you’re getting treatment for cancer, doctors might have to switch you to a new drug if the current one stops working. If you have an incomplete medical record that doesn't include the last course of treatment, your doctor could try you on a drug that already proved ineffective. Incomplete medical records can also lead to duplicate, unnecessary, or wrong tests and treatments.
Cancer treatment often involves many different providers, including surgeons, medical oncologists, radiation oncologists, pharmacists and primary care. A single, thorough medical record allows all these members of the care team to work together to provide the best care for you.
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