More than data: Synchronizing the breast cancer patient story

One in eight women in the U.S. will be diagnosed with breast cancer in their lifetime, that’s one person every two minutes.1 The good news is that the mortality rate from this devastating disease has decreased by 42% since 1989 and there are over 4 million breast cancer survivors with us today, thanks to early detection and improved treatment options.2

This Breast Cancer Awareness Month, the National Breast Cancer Foundation is urging us to do more than raise awareness and see these people as more than a statistic. In order to do that, and develop new and improved treatment options to prevent the untimely deaths of the over 43,000 mothers, daughters, sisters, wives and friends expected to pass from the disease this year, it is important to understand the breast cancer patient journey.2 

The treatment options and survival rates depend on numerous factors, including the stage of breast cancer or how much it’s spread, the type of breast cancer, as well as genetic factors. By accurately synchronizing real-world data (RWD) from sources such as medical claims, lab results, electronic medical records (EMRs) and hospital chargemasters (CDM), researchers can better understand the various factors affecting breast cancer patients and the impact of treatments, leading to more survivors. 

RWD can be applied to an array of use cases, providing insights that help enhance and accelerate research, including:

  • Clinical trial participant recruitment - RWD can help you easily discover patients meeting your specific criteria, such as patients with a certain type of breast cancer or those with specific genetic mutations.

  • Monitoring patients during the trial - You can analyze healthcare resource utilization outside of the study by synchronizing clinical trial participants with their RWD.

  • Conducting concurrent or control arm studies - You can quickly conduct control arm or concurrent studies to respond to new questions that may arise during the study or changes in care using RWD.

  • Long-term follow up - RWD future proofs your study, allowing you to conduct long-term follow up and better understand the safety and efficacy of a product once it is in market, including discovering potential adverse events.  

Revealing a survivor’s story

Following is an example of a patient’s breast cancer story that could unfold by synchronizing RWD:

Annual wellness visit
Meet Ann (who is actually represented only by a universal HealthVerity ID that allows us to compliantly synchronize her patient records across RWD sources). Ann is a 34-year-old African American woman. She struggles with her weight, but she is diligent about her health and wellness care, and is seeing her primary care physician for her annual wellness visit. By synchronizing her de-identified medical claims, lab data and EMR records, you learn that she has a comorbidity diagnosis of obesity, but her vitals and labs are normal. She has no family history of breast cancer and her breast exam is normal as well.

Annual gynecologist visit
Six months later Ann sees her gynecologist for her annual pap smear. Once again, her medical claims, lab data and EMR records show us that her vitals are normal and a pap smear and HPV test were done for cervical cancer screening. During the visit, Ann complains of a lump and swelling in her right breast that has occurred over the last two months. Upon examination, the gynecologist notes the lump and swelling that Ann reported and refers her to get a mammogram.

Test results and mammogram
Two weeks later, Ann’s test results from her gynecological exam are in. By continuing to monitor her medical claims, lab data and EMR records we see she has tested positive for HPV. Her pap smear is normal, however, showing no cell changes in the cervix. It is noted that Ann will need to have a repeat pap smear next year. Ann has also gone to an imaging center for her mammogram screening. The radiologist notes an abnormal result and schedules an MRI.

Further screening
Continuing to follow Ann’s story through her medical claims and EMR records, we see that Ann has had her MRI. The radiologist notes a small mass and refers Ann to an oncology consult.

Oncologist visit and testing
Ann meets with an oncologist who schedules several tests, as seen in her medical claims and EMR data. While all women are at risk for breast cancer, it most commonly occurs in women over 50, with a median age of 63 for diagnosis.2 Only 4% of breast cancers occur in women under the age of 40, and that is usually due to genetic factors that put the woman at greater risk.2 Because of this, the oncologist orders genetic testing, including OmniSeq INSIGHT® from Labcorp Oncology, a hereditary cancer screening panel that tests 523 genes, and HER2, progesterone receptor (PR) and estrogen receptor (ER) tests. The doctor also schedules a biopsy one week later.

Test results and diagnosis
Ann’s RWD indicates she was positive for BRCA mutation. BRCA is the most common genetic mutation affecting breast cancer, with 5% to 10% of breast cancers being related to this genetic factor that impacts one in 400 people.3 It is, however, more prevalent in people of Ashkenazi Jewish descent, affecting one in 40 women.3 

Ann also receives the pathologist report showing she is positive for breast cancer. The HER2, PR and ER testing indicates she has triple negative breast cancer (TNBC), called such because the cancer cells do not contain estrogen, progesterone or the HER2 protein. This can eliminate some treatment options, such as hormone therapies or HER2-targeted drugs.4 TNBC accounts for approximately 10% to 15% of breast cancers, but it is more prevalent in younger women with a BRCA mutation and impacts one in five Black women.4, 5  

Ann and her oncologist decide that she should have a mastectomy with radiation afterwards.

As is understandable with such a life-changing diagnosis and major surgery planned, we find that Ann reports the onset of depression and anxiety during a follow-up appointment before her mastectomy. Her medical and pharmacy claims and EMR data show that she is referred to a psychiatrist and prescribed an antidepressant.

With Ann’s medical claims, lab results, EMR and CDM data, we see that she had her mastectomy and it went well. TNBC tends to grow and spread faster and has a worse prognosis than other breast cancers.4 Ann was lucky though and caught it early. At her follow-up appointment one week later, we learn from the pathology report that the tumor was small and the cancer had not spread to nearby lymph nodes.  

Three to four weeks after her mastectomy, with the surgery site healed, Ann begins radiation to prevent the recurrence of the cancer. She receives radiation treatment five days a week for six weeks, as seen in her medical claims and EMR data. 

Continuing to follow Ann’s story through her RWD, we see that she has completed her radiation therapy and has been following up with her doctor every couple months for blood work and scans. After one year of follow-up appointments Ann has not complained of any new symptoms and all of her blood work and scans have come back negative. Ann is in remission!

Bringing the breast cancer story to life

As Ann’s story demonstrates, there are many factors impacting breast cancer and its treatment, and RWD can help you bring that story to life. HealthVerity has the nation’s largest interoperable, HIPAA-compliant healthcare and consumer data ecosystem, including Labcorp Oncology, which performs more than 910,000 oncology tests annually, as well as next-generation sequencing for BRCA and other breast cancer-related hereditary screenings, and CancerLinQ, one of the largest and most diverse real-world oncology databases, representing over 6 million cancer patients from more than 100 cancer centers and community oncology practices from all 50 states. 

Because the vast HealthVerity data ecosystem is completely interoperable, using unparalleled identity management to resolve patient identity across the entire ecosystem, CancerLinQ and Labcorp Oncology data can be seamlessly synchronized with each other and any of our other data sources to tell the breast cancer patient story beyond the cancer diagnosis. Additionally, our advanced privacy-preserving techniques allow us to provide certain demographic characteristics, such as age, race and ethnicity, while maintaining HIPAA compliance.   

Being able to synchronize multiple real-world data sources can provide a comprehensive picture of the breast cancer patient journey so we can do more than raise awareness; we can improve treatments and increase survival. 

Discover how you can instantly build custom breast cancer patient cohorts using CancerLinQ, Labcorp Oncology and an array of other RWD sources:

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1Susan G. Komen. Breast Cancer Awareness Month.

2Susan G. Komen. Breast Cancer Statistics.

3Susan G. Komen. Inherited Gene Mutations.

4American Cancer Society. Triple-Negative Breast Cancer.

5American Cancer Society. Key Statistics for Breast Cancer.

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