Getting your medical records organized

Keeping an organized file of your medical information is an important element of being an engaged and informed patient. It’s one way to improve the quality of care you receive, particularly if you see more than one doctor, seek a second opinion, or change doctors. It helps ensure you’re getting safe and effective management of your disease, as well as your general health.

What types of medical records should I keep?

If you have Waldenstrom macroglobulinemia (WM), there are certain pieces of information that you should have in your file:

Medical report when initially diagnosed with WM.
Pathology reports from bone marrow or other types of biopsies.
Imaging test results (X-rays, CT, PET scans): Get both the written report and the actual images, which are stored digitally and can be obtained from your medical facility on a CD.
Drug treatments: List the drug, dosage, frequency, duration, and start and stop dates; note any side effects you may have experienced.
Other therapies or procedures administered, such as plasmapheresis.
Blood and other lab tests results: For example, your CBC, serum viscosity, and immunoglobulin levels.
A list of the doctors you’ve seen, the reason you saw them, and their contact information.

In addition, you should keep information pertaining to your general medical history, including:

A list of medications or supplements you take for other health reasons.
Allergies: Include information on drug, food, latex, and/or seasonal allergies.
Immunizations: Date and type of all immunizations you’ve received.
Health history: Information on past procedures/surgeries, illnesses, and injuries.
Family history: Include significant medical issues; cancer, heart disease, diabetes, etc.

What’s the difference between electronic health records and personal health records?

All hospitals and most physician offices now use electronic health records (EHRs) to store your medical information. Some EHR systems allow you to log in to a secure portal where you can access your records. If you prefer keeping paper records, you can choose which documents you want to print out and organize them with tabs in a three-ring binder. It’s best to organize reports in chronological order so they’re easy to find and you can track your progress over time.

If you prefer to store your medical information digitally, you might consider using a personal health record (PHR) – an electronic app that allows you to gather and store your health information from different providers and institutions in a central place. A personal health record is something you create and manage, as opposed to an electronic health record which is owned and controlled by your healthcare provider and/or institution. You can also download documents from there to a thumb drive (also called a USB drive), which is portable and good to have for emergencies.

If you see multiple doctors and they don’t use the same EHR system, using a PHR is a good way to keep all your health information in one place that can be easily accessed and shared – with family, providers, and others of your choosing – via web-enabled devices, such as computers, smartphones or tablets. PHR programs are becoming more available through health plans, employers, healthcare institutions, and others.

However you choose to keep track of your medical information, either paper or online, maintaining organized records allows you to:

Track changes or trends of your test and treatment results over time.
Refer to reports when communicating with your healthcare team.
Compile information from all your doctors in one place.
Be knowledgeable about your medical care and advocate for yourself.

What about organizing my medical bills?

It’s also important to keep organized records of medical bills, payments, and insurance claims. You can either maintain paper file folders or scan documents to make electronic copies and store them on your computer in e-files. You may also have access to online tracking and other tools from your insurance company or employer.

Organized records become essential if you have questions about insurance coverage or billing disputes. Keep copies of the following information related to your medical treatment, including:

Itemized bills
Payment receipts
Insurance explanations of benefits (EOBs)
Correspondence with insurance companies
Letters of medical necessity
Prescription costs/payments
Receipts for out-of-pocket expenses (parking fees, meals, travel and lodging, etc.).

Being able to easily retrieve information when, where, and how you need it can lower the stress of dealing with a serious medical issue.