Healthcare Access, Equity and Real-World Data

In January 2019, Sylvia Rice’s life changed when the mother of four was diagnosed with stage 4 metastatic pancreatic cancer.

“The nurse walked in and she looked at my mom and said, ‘you have cancer, it’s metastatic but we do not know yet where the primary tumor is coming from,” recalled Sylvia Rice’s youngest daughter, Nicolette. “I could feel my heart shattering and I just remember feeling so hopeless in that moment. I was in nursing school, so I understood that in order to give this disease our best shot, we needed the right care team.”

In February, Rice was referred to Yousuf Zafar, MD, MHS, FASCO, a medical oncologist at Duke Cancer Institute who specializes in gastrointestinal cancers. Zafar is also a world-renown health services researcher with a focus in improving care delivery for patients with advanced cancer. He has obtained advanced training in health services research and participated in single-institution, multi-institution and national studies focusing on access to care, cost of care and comparative effectiveness of care delivery between health systems.

“When Mrs. Rice presented in my clinic, her performance status was very poor. I knew, based on data provided from a pivotal clinical trial conducted in France, that I wanted to treat her with a regimen called FOLFIRINOX, but her overall health would not be able to support the full regimen recommended by researchers,” described Zafar. “I needed to modify the regimen until her performance status improved, but how? Honestly, I didn’t have the answers. In order to best care for our patients, to fully understand how to adapt trials for our individual patients, we must shift the data paradigm. We must find ways to use real-world evidence to inform care. Only then will we be able to use data as an asset to improve patient outcomes.”

Learning From Every Patient

In current cancer treatment practice, each patient encounter is independent of the next, and clinicians do not fully understand how to apply trial data to their individual patients.

“Caring for every patient is critical to quality and equality, but learning from every patient is the next step,” explained Zafar. “We cannot get all the answers we need from administrative claims data, as there may be unmeasured variables in play. To better understand patient characteristics and social determents of health we must look to real-world evidence.”

In a study, led by Flatiron Health and Yale School of Medicine, presented at the 2019 American Society of Clinical Oncology Annual Meeting Plenary, investigators used patient-level data recorded by providers in the EMR, from over 280 cancer clinics, covering more than 2 million patients with cancer in the United States.

“If we are going to change cancer care, we must begin to collect the highest quality of data in the routine practice setting,” states Zafar. “Most individual patient data is used only to inform that patient’s treatment plan, but what if you could use that data to help inform care and quality decisions across your institution? What about in interactions across the country or even the world?”

Caring for Every Patient

In the same study referenced above, researchers also explored connections between the timeliness of cancer treatment and racial disparities in survival rates. Historically, cancer outcomes for African-Americans are worse than those of Whites, and investigators believed that timeliness of treatment might be associated with this disparity.

“A recent population-based study found that in the United States, the median time from diagnosis to initiation of treatment for patients with cancer is 27 days, but African-American patients were at risk for additional delay. We know this delay in curative treatment increases the probability of worse survival rates.”

One of the reasons for this delay in the initiation of treatment might be a lack of health insurance. Today, the Medicaid program covers one in five low-income Americans, including many with complex and costly needs for care. In 2010, the passage of the Affordable Care Act mandated that states expand their Medicaid eligibility to provide coverage for an additional 17 million low-income adults. However, a 2012 Supreme Court decision invalidated this portion of the ACA and made the coverage expansion optional for states. Relying on that decision, 14 states have not expanded Medicaid, leaving approximately an additional 4.5 million people without health insurance.

Sylvia Rice is among that number and has struggled to keep health insurance coverage during her cancer treatment.  “Honestly, not getting treatment became a real option,” described Rice. “Before my diagnosis, I was working as a fulltime nurse. The cancer quickly took my strength and left me with little energy for work. As a result of my decreased hours at work, I lost my insurance. It’s bad enough to find out you have this catastrophic disease, but then figuring out how to afford medical visits and treatments while also taking care of my family, it was very scary.”

The study presented by Dr. Davidoff at the ASCO Plenary found that, when it came to timely initiation of cancer treatment, Medicaid expansion was associated with a resolution of disparities between Blacks and Whites. This study serves as a proof-of-concept that, not only might health policy interventions improve care quality, but they might also reduce health disparities.

“The solution here is actually quite simple. We do not need further innovation in cancer treatment to eliminate these disparities. We need to level the playing field,” stated Zafar. “When we improve access to health care, we see an associated reduction in racial disparities and an improvement in the quality of cancer care. We must make the invisible, visible. We need to look at our own patient-level data to identify disparities and then we must safely and responsibly share that data, understanding that in sharing the data we may be able to improve outcomes beyond our individual practices.”

The 2019 ASCO Annual Meeting, taking place May 31-June 4 in Chicago, will bring together more than 32,000 oncology professionals from across the globe. The theme of this year’s conference is Caring for Every Patient, Learning From Every Patient.