Tips for Organizing Cancer-Related Paperwork

Learn what goes in a Personal Health Record and how to keep documents organized.

Medically reviewed in January 2022

When undergoing treatment for a disease like non-small cell lung cancer, patients and their caregivers will accumulate a lot of paperwork—everything from pathology reports and imaging test results, to insurance forms, bills, receipts, financial assistance applications, contact information for healthcare providers and more. Keeping all of this organized can be a challenge.

While each healthcare provider and facility will keep its own records about you or your loved one, it is important that patients maintain a Personal Health Record (PHR). A Personal Health Record is separate from formal medical records and serves as a central repository that contains the critical information from all the healthcare providers a patient is working with.

Effectively managing this paperwork can help give you a sense of control and make it a bit easier to manage logistics, such as filing insurance claims or completing tax forms. Furthermore, PHRs can help patients take an active role in their own care and make decisions about treatment. For example, having easy access to your test results and medical reports makes the process much easier if you decide to seek a second opinion from a different healthcare provider.

Organizing a Personal Health Record
The best system for keeping paperwork organized is the system that works for you. Some people prefer paper documents and file folders. Others use an electronic system, keeping scans or digital copies of documents on a computer or cloud storage. There are also web-based services that can help you build and maintain a PHR. Whichever method you choose, it is a good idea to keep a backup copy.

What goes in a PHR
Your Personal Health Record should include a number of documents:

  • 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 pathology reports, results from imaging tests and other lab reports.
  • Treatment information, including the names of medications, doses and dates the treatment was administered.
  • Other health information, such as previous illnesses, screenings and 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, naming a person (healthcare proxy) who can make health decisions on your behalf.
  • Contact information for your physicians and other healthcare providers.

Remember, physicians 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).

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