Updated on April 4, 2024.
A lot of paperwork can accumulate during cancer treatment—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 the person you are caring for, it is important to maintain a personal health record (PHR). A PHR is separate from formal medical records and serves as a central place that contains the critical information from all the healthcare providers someone is working with.
Effectively managing this paperwork can help give you a sense of control and make it a bit easier to manage things like filing insurance claims or completing tax forms. Furthermore, PHRs can help you take an active role in your own care and make decisions about treatment. For example, having easy access to your test results and medical reports can make it easier to seek a second opinion from a different healthcare provider, if you decide to do so.
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 (computer data storage through the internet). There are also web-based services that can help you build and maintain a PHR. Whatever 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 (a medical report about a a tissue, blood or organ that has been removed for evaluation in a laboratory), results from imaging tests (like X-rays) 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 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 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 protects your health information from being disclosed without your knowledge.
