Tips for organizing cancer-related paperwork

A cancer diagnosis and treatment tend to generate a lot of paperwork: pathology reports, imaging tests, insurance forms, bills, receipts, prescriptions, treatment records, your own notes. Keeping all of this organized can be challenging and at times overwhelming.

Paperwork may seem insignificant during a time when you’re navigating symptoms, treatment side effects, uncertainty, and major decisions about your health. But clutter can become another source of stress at a time when the last thing you need is another source of stress.

There are also benefits to keeping medical paperwork organized. It can give you a clear picture of your insurance coverage and finances. It can make things much easier if you are referred to a new healthcare provider or seek a second opinion.

Also, time and energy you don’t need to spend looking for a particular document is time and energy you can spend doing something else.

Organizing and maintaining a personal health record

People with cancer (as well as other significant medical diagnoses) are advised to maintain a file that contains all information related to the diagnosis and treatment. This is often referred to as a personal health record.

This file is separate from the medical records kept by your cancer care team and other healthcare providers. It serves as a central location for all the critical information from all providers you are working with.

What system should you use?

Like many other aspects of life and health, there is no best approach to keeping a personal health record. There is only the approach that works best for you.

Some people will find success with paper documents and file folders. Others will prefer an electronic or mostly electronic system, keeping scans or digital copies of documents on a computer, hard drive, or cloud storage. There are also web-based services that can help you organize and maintain your records.

The most important elements are that a system works for you and that it’s sustainable, meaning it can be updated and maintained without much effort.

Regardless of whatever method you use, it’s recommended to keep a backup copy.

What goes in your personal health record?

A personal health record related to cancer should include a number of document types:

• The medical records, lab reports, and notes from your initial cancer diagnosis, including the type of cancer and stage, and the date you were diagnosed.
• Test results, including results from imaging tests (like X-rays), pathology reports (a medical report about a tissue, blood, or organ that has been removed and sent for evaluation at a laboratory), and other laboratory reports.
• Treatment information, including the names of medications, doses, and dates the treatment was received.
• Other health information, such as previous illnesses, screenings, hospitalizations, and family history.
• Insurance paperwork.
• Receipts.
• Information about financial assistance including any applications for financial assistance.
• A living will, which specifies what type of care you want if you become unable to speak for yourself.
• A durable power of attorney for healthcare, a directive that names a person (healthcare proxy) who can make health decisions on your behalf.
• Contact information for your healthcare providers.

Remember, healthcare providers and medical facilities are required by law to give you access to your medical records. The right to this information is granted to you under the Health Insurance Portability and Accountability Act (HIPAA), which also protects your health information from being disclosed without your knowledge.