YOUR PERSONAL HEALTH RECORDS The International Myeloma Foundation (IMF) is committed to helping people with myeloma, as well as their care partners, friends, and family members. Taking an active role in your medical care is important. Keeping your health records organized can: ¡ Help you communicate better with your doctors and nurses, ¡ Help your team better understand your health history and your myeloma, ¡ Help you feel more in control during stressful times.
Paper records
Some people like to keep paper copies of their medical records. A 3-ring folder can help you keep everything organized. You can bring your folder to your doctor’s appointments so you can discuss your health history. At each appointment, you should ask for and receive records to add to your folder: ¡ After Visit Summary (AVS), a record of what took place at your appointment. ¡ Copies of any test results or procedure reports. Your folder is also a good place to store important legal documents. ¡ Advance directive, which makes sure your medical wishes are respected, including: Living will, which states which medical treatments you want or don’t want if you are permanently unconscious (such as CPR or feeding tubes). Medical power of attorney, which names a trusted person to make medical decisions according to your wishes if you become unable to communicate.
Electronic records
Over-the-counter (OTC) products
Most doctors use electronic health records (EHR) for your medical information. EHR must be kept private and secure. Many doctors have patient portals (websites or mobile apps) that let you: ¡ S ee all of your medical records, ¡ S ee your test results and procedure reports, ¡A sk for medication refills, ¡ S end messages to your healthcare team, ¡R ead responses from your healthcare team.
¡ Non-prescription medicines, ¡ Vitamins and supplements, ¡ Complementary, alternative, integrative practices: Complementary practices and products (like acupuncture or diet) are used together with conventional medicine. Alternative practices are used in place of conventional medicine. Integrative medicine combines conventional medicine with evidence-based complementary health approaches.
You have a legal right to see and get a copy of your own records. ¡Y ou can download your electronic records to keep on your computer or device, ¡Y ou can upload them to your personal cloud account, ¡Y ou can print them and add them to your medical folder.
Billing and insurance
How to organize your records
Choose a way that works for you and stick with it. You can organize your records by date or by category. Helpful categories include:
Diagnosis information ¡D iagnostic test results, ¡ T ype of myeloma, ¡D isease stage or level of risk (standard or high).
Test results ¡B lood and/or urine tests, ¡B iopsy and/or aspiration reports, ¡ I maging reports (such as CT scans and MRIs).
Medical visits and hospital stays ¡A fter Visit Summaries, ¡H ospital discharge summaries.
Treatments ¡M edication names and dosages, ¡H ow medications were given, ¡ T reatment dates (start and end).
¡ Medical bills, ¡ Explanation of Benefits (EOB) from your insurance company.
Contact information ¡ How to contact your doctors, ¡ How to contact your hospitals and treatment centers.
Other health information ¡ Your other past and present medical conditions, ¡ Your other past and current medical treatments, ¡ Vaccinations, ¡ Allergies, ¡ Summary of family medical history,
If your myeloma treatment ends or pauses Ask for a treatment summary (the most important parts of your treatment). This is a common request, and it is easier to get this information right away than months or years later. After 7 years, this information may no longer be available to you. If you change doctors, get a complete copy of your records. You have a legal right to have this. There may be a fee.
Sharing information
It is important for your doctors to see your medical records. If your different doctors use different systems for medical records, you will be asked to give permission for your records to be shared. Make sure you understand the forms you sign. Ask questions if anything is not clear.
Protecting your information
You can give a copy of your medical records to someone you trust, like a family member or close friend. To protect your personal information, be sure that your medical records are secure and private.
Have questions?
The IMF InfoLine responds to your myeloma-related questions in a compassionate and caring manner. To receive the most up-to-date information, call 1.818.487.7455 or email InfoLine@myeloma.org, or visit mmsm.link/infoline to schedule a time to talk with an IMF InfoLine Coordinator. Want answers and don’t want to wait? Ask Myelo®, your AI assistant at myeloma.org that is designed to support you in your life with myeloma and help you find the right resources.
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