Listen to the Cancer.Net Podcast: Keeping a Personal Medical Record, adapted from this content.
Keeping an accurate record of your personal medical history is an important step in managing your health. This record should include test results, treatment reports, and notes written by your doctor for each doctor, hospital, or clinic you have visited. Although each facility keeps its own record of your medical care, it is a good idea to maintain and update a personal copy, as well.
Reasons to keep a personal medical record
There are several reasons to keep a personal medical record.
- Each facility or doctor involved in your care has a separate medical record for you. A personal medical record combines these separate records into a single, more complete medical record.
- A personal medical record is always available when you need it. This is especially important if you transfer to a new doctor or facility or if a record is lost or destroyed.
- A complete and accurate medical record gives new doctors the information they need to provide you with the best possible care, including follow-up care and treatment of any side effects.
- An accurate personal medical record is especially important for survivors of childhood cancer. It provides important treatment details that children may not remember later in life.
- Having your medical records at home gives you private time to read and understand them, which may help you feel more in control of your health care.
- A personal medical record can help you better manage health insurance claims, taxes, and other legal matters, such as disability insurance and life insurance. Learn more about managing the cost of cancer care.
- If your cancer comes back, details about your original diagnosis and treatment can help your doctor design a treatment plan.
- Because some types of cancer have a genetic component, a personal record of your diagnosis and treatment may be important for relatives, such as siblings and children.
What to include in your personal medical record
A complete medical record of your cancer and treatment should include the following information:
- Your diagnosis, including the specific cancer type and stage (describes where the cancer is located, whether it has spread to other parts of the body, and if it is affecting the functions of other organs in the body)
- Dates of diagnosis and treatments
- Copies of diagnostic test results and pathology reports
- Complete treatment information, such as chemotherapy drug names and doses or the sites and doses of radiation therapy
- Treatment results, including any complications or side effects
- Information about supportive care, including medications or procedures used to treat pain, nausea, or other side effects, as well as other types of care, such as occupational therapy or nutritional support
- A schedule for follow-up care
- Complete contact information for doctors and treatment centers involved in your diagnosis and treatment
The record should also contain information about other aspects of your health:
- Contact information for other doctors, such as your family doctors (past and current)
- Dates and details of other major illnesses, chronic health conditions (such as diabetes or heart disease), and hospitalizations
- Your family medical history
- Details of past physical examinations, including screening tests and immunizations
ASCO offers cancer treatment plans and summaries to help store information about your cancer, cancer treatment, and follow-up care. Use these treatment plans to begin discussing your care with your doctor.
How to compile your personal medical record
If you have recently been diagnosed with cancer or are currently in treatment, the best way to compile your personal medical record is to collect information on an ongoing basis.
- When you have a diagnostic test or procedure, ask for a copy of the test results or procedure report.
- At each doctor appointment, ask for a copy of any new information added to your medical record. You may also want to write your own notes detailing what happened at the appointment.
- If you spend time in a hospital, ask to take a copy of your medical record with you when you leave.
- Consider keeping a health diary to write down your symptoms and side effects of medications and treatments.
- Keep copies of medical bills and insurance claims.
If you have completed treatment, it is not too late to compile a personal medical record.
- Contact your oncologist and ask for a written summary of your diagnosis and treatment.
- Contact your doctor's office and the medical records department of facilities where you were treated to ask about how to get a copy of your medical records. You may need to request a copy in writing or complete an Authorization to Release Medical Information form.
- If you need help figuring out which records you need, ask your doctor, an oncology social worker, or someone from the medical records department at your treatment facility.
- If compiling your medical record seems like an overwhelming task, ask for help from relatives or friends. You have to sign any requests for personal medical information, but others can make phone calls and fill out forms for you. Ask other cancer survivors for advice on compiling a personal medical record.
Since April 2003, the federal Health Insurance Portability and Accountability Act (HIPAA) has required doctors and medical facilities to give patients access to their medical records. However, it may take up to six months to receive a copy of your medical records. In addition, you may be charged for the copying of medical records, but the fee is regulated by state laws.
Organizing and storing your personal medical record
There are different ways to organize your medical record. Many people organize their record by date. You can also divide your record into categories, such as tests, treatments, and doctor appointments.
You may decide to keep your medical record in a filing cabinet, a 3-ring binder, a file folder, or even just a box. Ask other cancer survivors what worked for them, or visit an office supply store to see what types of organizers are available.
Many people keep at least part of their medical record on a computer. You can type notes on the computer and scan papers into a computer file. If you decide to keep your medical record online, you should print a copy to take with you to doctor appointments and regularly back up your record onto a CD or a removable flash drive.
However you choose to organize your personal medical record, keep it in a secure location, such as a safe deposit box or fireproof home safe. You may also want to give a copy of important information to a relative or friend in case of an emergency.
You may also maintain your personal medical record on the Internet through a number of companies that charge a fee for their services. With your permission, records stored online can be accessed by family members and doctors. Before choosing an online company, carefully check the security and confidentiality measures the company uses to protect your medical information.