Keeping a Personal Medical Record

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 for keeping 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, which becomes 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 the best possible care. This includes follow-up care specific to your diagnosis and treatment, as well as monitoring and treatment of any side effects caused by your original cancer treatment.
An accurate personal medical record is especially important for survivors of childhood cancer because it provides important information related to long-term health, and treatment details that children may not remember later in life.
Having your medical records at home gives you time to read and understand them privately. A personal medical record helps some people feel more in control of their 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.
If your cancer should come back, details about your original diagnosis and treatment can help your doctor design a treatment plan.
Since some cancers 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-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's affecting the functions of other organs in the body)
Dates of diagnosis and treatments
Copies of pathology reports and diagnostic tests, such as biopsy results, imaging tests (x-rays, MRIs, etc.), and laboratory test reports
Complete treatment information, including drug names and dosages for chemotherapy and sites and dosages for radiation therapy
Treatment results, including any complications or side effects
Information about supportive care, including pain or nausea medications, drugs or procedures to treat other side effects, and other types of care such as occupational therapy or nutritional support
A schedule for and results of follow-up tests
Complete contact information for doctors, clinics, and/or hospitals 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 doctor (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

The American Society of Clinical Oncology (ASCO) is developing treatment plans and summaries to help improve the documentation and coordination of cancer treatment and survivorship 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 go for a diagnostic test or procedure, let the person giving the test or procedure know that you would like 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 every 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 record 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.

Write to or call 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 and ask about what getting a copy of your medical records. You may need to request a copy in writing or complete an Authorization to Release Medical Informationform.
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 HIPAA (Health Insurance Portability and Accountability Act)law 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. You may also 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. There are a number of printable forms available online that can help you organize your medical record (see below).

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 can 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.

Resources for organizing your personal medical record

Cancer.Net: Medical Forms

Cancer.Net: ASCO's Cancer Treatment Summaries

Lance Armstrong Foundation: Cancer Survivor's Medical Treatment Summary

Lance Armstrong Foundation: Cancer Survivor's Health Journal

Lance Armstrong Foundation: Survivorship Notebook

American Cancer Society: Tools to Monitor Treatment

MayoClinic.com: Cancer Records Checklist

Additional Resources

Lance Armstrong Foundation: Important Records Survivors Should Keep

Lance Armstrong Foundation: How to Organize Important Records

MedlinePlus: Personal Medical Records