Structured Data Enables Research into Efficacy of Double Mastectomy

National Cancer Data BaseDid you know that there's a National Cancer Data Base? Most people have seen facts and figures on the news about cancer, but it's rarely prefaced with stating where the information comes from or how it's collected. But it's true: since 1989 there has been a National Cancer Data Base (NCDB) that collects information on ~70% of all invasive cancers in the US, pooling data collected by the many cancer registries across the country. By gathering this medical data into one large place, physicians are able to perform more informed research, which enables them to better identify population or demographic trends in those diagnosed, and the efficacy of treatments of those patients. (For more information on how the NCDB works and what information it captures, please check out this page). A recent study has used the structured data in the NCDB to examine what effects double mastectomy has on the timing of chemotherapy and patient outcomes compared to a single (or unilateral) mastectomy. While some of their findings come with a series of asterisks, the fact is that we now have the data to ask more questions and better explore the best options for treating those we love dearly.

The study, entitled "Impact of Bilateral Versus Unilateral Mastectomy on Short Term Outcomes and Adjuvant Therapy, 2003-2010: A Report from the National Cancer Data Base," looked at the records of over 300,000 women to see if there were more delays associated with bilateral mastectomy than those associated with unilateral mastectomy. Out of the 300,000, 81% had unilateral mastectomy with 19% opted for bilateral mastectomy; out of those groups, the researchers found

that the median number of days from diagnosis to [unilateral mastectomy] increased from 10 days in 2003 to 28 days in 2010, and for [bilateral mastectomy] it increased from 21 days to 31 days. Patients who had reconstruction were twice as likely to have a longer time to surgery.

This delay also translates into a delay in adjuvant therapy (medication and chemotherapy and other attempts at treating the cancer post surery), which could also have an impact on patient outcomes — a delay in treatment is precious time that allows cancer to become more entrenched and spread further in the body. Of course, there could be a myriad of reasons for the delay—there's a lack of surgeons trained in double mastectomies, patients' insurance requirements have different timetables than the facilities, etc. There's nothing to suggest that double mastectomies are inherently slow to occur, or that this is not something that can be corrected. However, what it does allow for future researchers, is a way to examine the results of a study on the efficacy of double mastectomy. If physicians can control the delay for both the unilateral and bilateral procedures, then it removes a variable in seeing how effective one approach is versus the other. Because, as of now, this extended delay could be causing confusion in how well double mastectomies are working for patients.

Most importantly though, beyond the question of what is influencing these outcomes, is the fact that we can examine the various factors that go into a patient's experience. Gathering this information into one large national database gives reviewers a chance to look at how tumors react to treatment, along with seeing if there are any patterns of behavior in terms of geographic location of the patients, or socio-economic factors that may enter into the equation. All of this is now available for researchers to sort through and weigh in their considerations of how best to approach cancer treatment. That is because these are all points of structured data - data that has been isolated away from large, free form text and put into finite boxes using a unified vocabulary. Physicians are comparing like to like, and are able to skip over the subjectivity of terms that are "similar" to each other.

At mTuitive, we are very familiar with this as our products capture these pieces of structured data in a synoptic report. In fact, our xPert for Pathology, eFRM, and OpNote products are all used to gather cancer data electronically and uniformly, which makes it easier to send in to cancer registries. In our work with Canadian Partnership Against Cancer in Nova Scotia, we maintain templates that have questions about delays from diagnosis to surgery. Therefore we are all too familiar with this interest in how delaying surgical intervention can have consequences on a patient's outcome. Once medical facilities make it a priority to capture this information, and to capture in a standardized way that makes it easier and faster to transmit to a national data base, then it opens up a whole new world of data that they can use to further their understanding of how cancer responds to various treatments. By standardizing a few questions for oncologists, surgeons, and pathologists, we are able to establish that groundfloor of knowledge today which allows the medical community to build better bridges to tomorrow's most effective treatments.