What Breast Cancer Patients Aren’t Told about Their Medical Records

Calendar Icon March 19, 2021
Reading Time Icon Read Time: 5 min
By Ciitizen

When you’re a breast cancer patient, each physician and medical facility you visit keeps information on your diagnosis, medications, test results, and treatment plans. Each time you see your current doctors—or new ones—you add to your medical history. After a while, you may want to seek a second opinion on your treatment or get into a clinical trial. To do this, you need a copy of your medical records. It would be less stressful if you could have the complete set of your records in one place. That must be a simple process, right? Unfortunately, it’s not as easy as you might think. At the end of the day, it’s up to you to collect all your records as you move from appointment to appointment, test to test, and procedure to procedure. Or is it? You might be surprised what patients aren’t told about medical records. There’s a solution to help ease this burden.

Medical record keeping can be archaic

Some healthcare systems still use outdated methods for their record keeping. There are older electronic records systems and numerous instances where unrelated health systems’ records are completely incompatible with their neighboring facilities. Some offices may even use the old ways of keeping records: on paper or on older computer systems.

Are health records kept in a centralized database?

If you believe that your health records are held in a centralized database, you may be partially right. Not all databases are created equal. What might be part of one system for one group of facilities might be something entirely different for another.

For example, if you’re being treated within a single healthcare system—that is, you have the same doctors, labs, tests, procedures, surgeries, and treatment plans across multiple facilities within that system—then all your information is usually in one centralized place. However, if you cross that line, it can result in missed lines of communications and results not reaching your physicians.

EMRs, EHRs, and PHRs: Can these help in your cancer care?

What patients aren’t told about medical records include three types of electronic medical records.

Electronic medical records (EMRs)

EMRs are part of a digital method for your authorized providers to store essential information about your care and to track your health information over time. All members of your healthcare team can read them, though they must be members of the same office, clinic, or hospital. EMRs were created to replace paper records. You can even view these yourself—under the Health Insurance Portability and Accountability Act (HIPAA), you’re allowed to see or have a copy of your medical records.

Electronic health records (EHRs)

EHRs are different from EMRs. They show the broader health of the patient, contain information from all providers involved in your care, and can be shared with other hospitals, medical practices, laboratories, and specialists.

Personal health records (PHRs)

PHRs have the same information found in EHRs, but you can easily access and manage these records through a patient portal, a website designed to provide information on your test results, appointments, past procedures, and more. In many cases, the information in PHRs is easily downloadable and printable.

Getting your health records is free, right?

It depends. If you happen to be a member of your healthcare system’s patient portal, you can read things such as your after-visit summaries for your chemo infusions, procedure narratives, and/or doctor’s office visit/progress notes. Most portals let you print these out, a great way for you to begin collecting your medical records.

You can also ask your provider if they can print out copies of recent procedures or surgeries, known as procedural or operative notes. Give them plenty of time, and you may be able to receive this record at your next visit. Another idea is to message them through the patient portal to let them know that you are working on collecting your patient records. See if they can print out the information on your latest procedure or surgery.

What’s the deal about paying for my medical records?

If you’re feeling up to tackling the collecting process, that’s great! However, when you have a ton of records, then what patients aren’t told about medical records is a bit dicier.

Getting your medical records can be difficult, especially when you must request your records and it’s a painstakingly slow process. You have to fill out request forms, sign them, and either mail, fax, or email them back to the Medical Records department.

How much can you expect to pay?

How much you pay for your records varies from place to place. It is expected that patients should pay “reasonable costs,” but when you have countless medical records, it can be cost-prohibitive.

Generally speaking, it costs a specific amount per page plus the cost of staff labor to do the work and mail your records, even if the files are done electronically. Before you start, get an estimate of the charges in advance.

Just when you thought that you knew everything about what patients aren’t told about medical records, right?

How does it take to receive your health records?

Don’t expect to receive your medical records quickly, as the process takes time. But you should receive them within thirty days of your request. If your healthcare provider takes longer, up to sixty days, they must let you know in writing the reasons for the delay and when you can expect to receive them.

Don’t forget the format.

When you make your request, be sure you let them know what format you would like your records in. You can choose between readable paper hard copies or electronic ones, like a CD-ROM, DVD, or stick drive.

Doctors can look up your medical history.

When it comes to your breast cancer treatment, it’s crucial that everyone involved in your care knows what you—and they—are up against. You should have your lab results, biopsies, imaging studies, procedures, surgeries, medications, and treatment plans, all of which form the larger picture of your treatment.

According to the US Department of Health and Human Services, only you or your personal representative has the right to access your records. Your health care providers may send copies of your records to another provider as needed for treatment—with your permission.

How can you make collecting your medical records easier?

Now that you have an idea of what patients aren’t being told about medical records, you can rest assured that someone’s got your back.

Ciitizen can help out when you need to collect all your medical records.

A free service, Ciitizen helps you quickly and easily request your full medical records from all your providers. We then organize and manage them digitally, so you and your medical teams can access them anytime and from anywhere in order to plan out your breast cancer treatment. This way, you can also get a second opinion without the stress of having to undergo the same tests all over again. Also, if you’re interested in becoming involved in a clinical trial, having your complete records makes the process easier. Ciitizen can help you save time and energy, things that you may be in short supply of.

Ciitizen is a free service that helps patients get more out of their health records. Our platform enables patients to find better treatment options and gives them the opportunity to advance the research for cures. Ready to control all of your medical records in one place? Sign up today in less than 5 minutes!

Share this insight