Keeping Your Medical Records Organized

Keeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With organized medical records, you can track changes and find patterns in your health much more easily. You may also feel more empowered and in control of your care. And research shows that you will have better overall health.^1,2

You will be thankful to have quick and easy access to your records if you:^2,3

• Switch doctors
• Move cities
• Get sick when you are away from home
• Have a health emergency
• Experience a natural disaster

To ensure the best possible health outcomes, bring your own copy of your records when talking with your doctor. This gives your doctor more context for the discussion and insight into your condition. It also makes it easier for specialists to assess the situation and give their expert opinion. Then, your doctor can recommend the best treatment options for you.^2,4

Getting your medical records

The first step in staying organized with your medical records is getting them from your providers. The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule gives you the right to see and obtain a copy of all of your medical records.⁵

Most hospitals or clinics can help you get copies through a request form or online system. But requirements may vary depending on where you get your medical care. To make sure you receive accurate information, double-check with your doctor that all the information is up to date.^3,4

You can request the following types of records from your doctors:¹

• Your medical and family medical history
• List of medicines you take
• List of allergies you have
• Your test results
• Vaccines you have received
• Treatments or surgeries you have had
• Information about your primary care doctor

Once you have copies of your records, archive them in the way that works best for you. You can store them digitally, in a file folder, or inside a three-ring binder. If you store them physically, make sure they are in a safe, private place. There are also mobile apps that can store your records. Try organizing your records by date to make them easy to find.^1,5,6

Keeping track of your children's medical records

For parents, keeping track of your children's medical history is vital to their well-being. Request copies of their records from their doctors. Then, organize them in an easily accessible and safe place, such as an online folder or a file cabinet.⁶

Using copies of your child's most current records, make a portable set that you can take to the doctor with you.⁶

Also, create a small handout that can be used at critical care appointments or in emergencies. Share the handout with anyone who helps care for your child, including daycare providers, teachers, babysitters, and camp counselors.⁶

This handout could include:⁶

• Birth date
• Allergies
• Medicines and dosages
• Doctors and contact information
• Emergency contacts

Considerations for people with rare diseases

Keeping detailed electronic records may help your doctor find others with the same diagnosis. This may help you access new treatments and support networks for your or your child's rare disease.⁷

Make sure you have accurate and up-to-date information about your or your child's past diagnoses, treatments, and prognoses. Having limited access to your medical records puts you at a disadvantage. You may lack the resources or knowledge you need about your illness.⁶

Finally, be your own advocate. Keep up with current lab test results and physician notes about your progress over time. Keep a log of how you reacted to any medicine or treatment. Be sure to include the exact name of the drug, dosage, and details about what happened. This record will be helpful when you have new symptoms or begin new treatments in the future.^2,4