Although most patients know that it’s important for them to have their medical record information organized and current, the reality is that very few do have them. Furthermore, receiving a breast cancer (BC) diagnosis is frightening and bewildering; it’s a time when it may be extremely difficult to feel in control and organized about anything.
There are several digital tools that can enable you to view and organize your medical records. These include patient portals provided by your clinical providers’ practices and hospitals, personal health records (PHRs), and mobile apps.
Why It’s Important to Think about Optimally Managing Breast Cancer Medical Records
Many make assumptions regarding their medical records. Some patients believe that their records are easy to obtain and kept indefinitely. However, they may be surprised to learn that federal law mandates that providers only retain medical records for a minimum of seven years following the last date of service provided. Therefore, if you’ve just been diagnosed, it’s crucial to have a plan for obtaining your medical records. If you wait longer than seven years following your diagnosis, it may be challenging to get all your records.
BC patients may understandably become frustrated and overwhelmed due to the barriers that they may encounter, and they simply stop trying to obtain their medical records. But this may lead to consequences, such as unnecessary repeat testing, increased risk of associated harms (e.g., due to repeated imaging), and treatment delays that could impact therapeutic efficacy and increase recurrence risk. Keeping on top of managing medical records is crucial for making informed treatment decisions today and down the road, should the patient develop advanced or stage 4 metastatic breast cancer.
Consider the following: after being diagnosed, you’ll almost certainly see a whirlwind of new clinical providers, including oncologists, surgeons, radiologists, and other specialists. Every consultation, second opinion, and office visit will include medical records documenting your visits. Depending on your type of BC, its stage, size, and grade, your medical records may also include:
- Surgical pathology reports
- Lab results
- Imaging reports
- Genomic testing results, in which BC tissue is tested for specific proteins and genes and the results are used to guide treatment decisions
- Molecular testing results, which analyze the expression of multiple genes that have been validated to be cancer related, helping identify specific targetable mutations
What Are Your Options for Obtaining and Managing Breast Cancer Medical Records?
Many patients are now using patient portals, secure websites that enable you and people whom you authorize (e.g., designated family members) to view and organize your medical records. Most give patients the ability to securely communicate electronically with their providers. This type of messaging typically populates the patient’s chart in the provider’s electronic health record (EHR).
That said, many clinicians’ offices, hospitals, laboratories, and imaging locations use different patient portals. Many patients end up having multiple portals and need to juggle numerous usernames and passwords. Also, most portals do not contain your complete set of records. They probably have a list of your medications, allergies, and test results yet are unlikely to include office notes, and they often won’t have records for care you received at different facilities. Therefore, it may still be necessary to request paper records.
Patients may also use a PHR, an electronic application that enables them to organize medical records securely and privately. PHRs are often compared to EHRs, but information within a PHR can come from multiple providers and yourself. For example, many PHRs enable the addition of over-the-counter medications and supplements and the tracking of exercise routines. However, the lack of interoperability is problematic, since PHRs do not typically connect with your hospital system or health insurance company. PHRs are usually accessible via the internet and are free or cost a small subscription fee.
Understanding the Barriers That May Interfere with Managing Breast Cancer Medical Records
Several factors serve as barriers to achieving EHR and other platforms’ interoperability, including the technical difficulties of connecting multiple systems, the tremendous associated costs, changing government regulations, and the extreme complexity involved in sharing patient data in our increasingly fragmented healthcare environment.
Because the system remains broken, the onus is often on patients, leaving them to contact each practice, hospital, lab, etc. to obtain their records. Many medical offices can’t provide such information electronically and may even charge a fee, as per the Health Insurance Portability and Accountability Act’s “Privacy Rule.” Typically, the fee may only include copying, supplies, labor, and postage costs. However, since a BC patient’s medical record may consist of hundreds of pages, this can still quickly become an expensive proposition.
Is There a Reasonable Solution to These Important Concerns?
Fortunately, the answer is a resounding “yes.” Ciitizen offers a free, unique service that helps patients easily obtain and manage their breast cancer medical records. Ciitizen and its community of partners are dedicated to helping BC patients get more out of their own medical records, which includes:
- Enabling patients to obtain crucial second opinions more quickly
- Helping patients feel more in control of their records and become more actively engaged as a member of their own healthcare team in determining critical treatment decisions
- Enabling patients to locate clinical trials for which they are a match, using their records to confirm trial inclusion and exclusion criteria
How Does Ciitizen Work?
- Ciitizen collects all your patient records for you.
- Ciitizen digitizes all records obtained, so the records are controlled by the patient.
- The platform provides a “Personalized Disease Summary,” serving as a quick reference to crucial information.
- Ciitizen enables easy sharing of medical records and Personalized Disease Summaries with all the BC patient’s clinical healthcare team.
Crucially, all of the above can help accelerate the development of and increased access to safe and effective treatments for patients with any BC subtype.
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!