Your mesothelioma diagnosis may have brought a lot of uncertainty into your life, but one thing is for sure: you will spend much more time at a doctor’s office or other medical facility. Managing your mesothelioma medical records from all these doctor visits is vitally important. Good organization can help you become an active member of your own care team.
Why Do I Need a Copy of My Mesothelioma Medical Records?
Many medical providers allow you to view your mesothelioma medical records online. While this is very convenient, it’s no substitute for your personal copy of your records. Your complete copy of your medical file is called a personal health record or PHR.
During your mesothelioma treatment, your medical team might expand from your personal physician to include radiologists, pathologists, oncologists, thoracic surgeons, mesothelioma specialists, and more. You may travel to different medical facilities to visit a specialist or participate in a mesothelioma clinical trial. Your copy of your mesothelioma medical records could be the only complete copy, all in one place, of your treatment history.
When you see different specialists at different medical facilities, it’s crucial that they know what mesothelioma treatment you have already had. The mesothelioma medical records you keep might prevent unnecessary repetition of invasive and expensive tests.
Your personal copy of your mesothelioma medical records is also valuable if you decide to seek treatment from an alternative medicine practitioner. All your care providers need to have the full picture, so you don’t receive combinations of medicines or treatments that cancel each other out or make you sicker. You will be the conduit for information between your alternative practitioner and your physician. Your PHR is a great way to make this happen.
Your mesothelioma medical records can also be important if you file an asbestos lawsuit or apply for compensation from an asbestos trust fund. You’ll need to demonstrate your mesothelioma diagnosis by a qualified doctor. Your medical bills may be a factor in determining the amount of any mesothelioma settlement or jury verdict you receive. Your lawyer will need to get certified copies of these records from the providers, but your PHR will help your lawyer understand the full range of your treatment and make sure that no medical bills are overlooked.
What Is Included in Mesothelioma Medical Records?
Your mesothelioma medical records include every mesothelioma treatment you have received. The records can include:
- Doctor’s notes
- Medical billing, including for any medical devices such as oxygen tanks
- Medical test results
- X-rays, CT scans, PET scans, etc.
- Records from hospitalization due to your mesothelioma, including for mesothelioma surgery
- The dates, doses, and drugs administered for chemotherapy treatments
- The dates and doses of radiation treatments
- The dates, doses, and drugs administered for immunotherapy treatments
- Your medical records from any clinical trials you participate in
- Notes and treatment plans for any alternative medical treatments, such as acupuncture, homeopathy, or naturopathy
- Your advance medical directive
Tools for Managing Mesothelioma Medical Records
You will probably receive some of your mesothelioma medical records in electronic form and some (especially billing) may arrive in paper. It’s a good idea to keep all your records in one format, so you’ll probably want to print out your electronic medical records or scan in the paper records. Choose the format that you’re more comfortable keeping organized.
If you choose to keep your mesothelioma medical records in paper, it’s a good idea to invest in some organizing tools. Buy a three-ring binder and insert labeled dividers to separate different types of records. Over the course of your mesothelioma treatment, you may end up with multiple binders. Or you can get an accordion file with different pockets for different types of medical records.
For those who are comfortable organizing documents in electronic format, some extra tools are available. You could keep it simple and set up a system of folders and subfolders on your computer, to organize your records. Or you could use an electronic storage tool such as Microsoft HealthVault.
If you store your records in digital form, take a few minutes to make sure each document has a title that matches the content. Scanners often assign a meaningless set of numbers or call each pdf “Document.” If the records have clear titles, it will save you from having to open each one later when you are searching for a specific piece of information.
Storing your electronic documents in a cloud storage site such as Box can make it easier to share documents with different providers and to get help from family members in managing your PHR. A child who lives far away can be part of your care by organizing the scanned documents, for example.
A word of caution about storing your PHR in the cloud: some online file storage apps don’t provide the level of privacy protection that you should have for your mesothelioma medical records. Make sure you use storage that is HIPAA compliant and be aware that the free versions of popular cloud storage sites like Google docs and Dropbox do not meet this standard. If you want to manage your PHR in the cloud, you may need to opt up to a paid subscription.
Your Rights to Access Your Medical Records
HIPAA stands for the Health Insurance Portability and Accountability Act of 1996. This law not only set standards to protect the privacy and confidentiality of your medical records; it also ensured that you have access to your full medical record.
HIPAA guarantees that your mesothelioma medical records belong to you. You are allowed to see and have a copy of your doctor’s notes, your test results, your scans. Almost the only medical provider information that patients don’t have a right to see, under HIPAA, are notes taken by a psychotherapist.
Many medical institutions have adopted policies that make it easy for patients to go online and access their medical records. If any of your providers doesn’t give you a copy of your records after an information request, you can make that request in writing. Under HIPAA rules, doctors have 30 days after a written request to provide a patient with a copy of his or her own medical records.
Creating your own PHR allows you to take a more active role in your medical care. It is easy to give all your providers have the information they need to develop an integrated care plan when you have organized your mesothelioma medical records and have your PHR at your fingertips.