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cancer injustice is not a science problem, a technology problem, or a genetics problem. it’s a

from the ASCO plenary june 1, 2019

there is a large volume of evidence that racial disparities exist in cancer outcomes and access to treatment. and in many cases, these are cancers for which readily available diagnostic and treatment modalities exist. we don’t need innovation to close this gap, we need to level the playing field.

the affordable care act [ACA] introduced in 2010 in the USA was meant to reduce those health disparities. yet in 2012, the united states supreme court declared that federal mandate to be unconstitutional and left it up to the individual states to decide as to whether or not they wanted to expand medicaid eligibility. as such today, 14 states have not expanded their eligibility. if these states were to expand eligibility, an additional 4.5 million people would receive coverage.

this study on ACA teaches us that health policy interventions can improve the quality of care and decrease health disparities. it teaches us that if we responsibly share our patients’ data, we can answer questions that would otherwise be unanswerable such that every patient’s interaction informs the next.

this data and others like it suggests that maybe the answer to our problems is universal access to health care, yet the answer is not quite that simple. if we look at countries around the world that have access to universal health care, we find that despite that access, lower socioeconomic status is still associated with worsened cancer related outcomes.

what we need is learning from every patient such that every patient interaction informs the next and how to safely and appropriately use our patients’ data to answer questions that would otherwise be unanswerable. in fact, the study presented takes a leap forward in shifting the data paradigm. the investigators had access to patient level data from 280 cancer clinics around the country [USA], representing over 2 million patients with cancer. the study served as a proof of concept that health systems can indeed share their data to not only inform health policy, but possibly improve outcomes and decrease disparities.

in a typical encounter with a patient data is collected, including labs and molecular diagnostics, maybe even patient reported outcomes. unfortunately, this data only informs that patient at that time. but what if it could inform clinical interactions across entire institutions? what if it could inform interactions around the country or even around the world? the first step in making this happen is collecting the data and conducting periodic analysis but in order to have this information available in real time, the data has to be cleaned and analyzed rapidly.

real world evidence and a learning world health system can be used to inform patient population-based outcomes and cancer quality as was done so well in this study.

it’s also important to examine the limitations of real world evidence in general. the first question we have to ask is related to its quality and completeness. how and when patients should consent to the use of their data, and how this data will ultimately be used by whom and to what end. importantly, most real world evidence today lacks quality of life data, patient reported outcomes, preferences, and undocumented clinical decision making.

this study presented during this plenary at ASCO serves as a proof of concept that improved access to cancer care is associated with timeliness and reduced disparities. yet despite that, improved access, quality of cancer care has room for improvement, and it’s possible that the path to improvement is paved with real world evidence, which can identify policy solutions to improve care, quality, and outcomes.

from the abstract LBA1 [affordable care act [ACA] Medicaid expansion impact on racial disparities in time to cancer treatment]— patients ages 18-64 years with advanced or metastatic cancer [NSCLC, breast, urothelial, gastric, colorectal, renal cell, prostate, and melanoma], diagnosed between january 1, 2011 and december 31, 2018, from the nationwide flatiron health electronic health record-derived database.

the study included 34,067 patients [median age 57 years; 12% african american]. african american patients were 4.9 percentage points less likely to receive timely treatment. regardless of race, medicaid expansion trended toward an increase in timely treatment overall. expansion was associated with a differential benefit for african american vs white patients. prior racial disparities were no longer observed after medicaid expansion.

conclusions. implementation of medicaid expansions as part of the ACA differentially improved african american cancer patients’ receipt of timely treatment, reducing racial disparities in access to care.


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