In theory, it’s simple. Gather data about the access that patients with cancer have to adequate food, housing, transportation, and other essentials. Combine that information with other datasets to determine whether an unmet need—in addition to clinical and genomic factors—is putting patients at risk for inferior outcomes.
In practice, however, it’s far more complicated, as Leonard Kalman, MD, executive deputy medical director and chief medical officer at Baptist Health Miami Cancer Institute (MCI), explained in an interview with Evidence-Based Oncology (EBO).
He described how MCI has worked to address the challenges of gathering data on the nonclinical factors that affect cancer outcomes—known as social determinants of health—with systems that weren’t created for these tasks.
Kalman spoke with EBO as the Institute’s Division of Health Care Equity celebrates its first anniversary. The Division was formed in June 2022 to decrease disparities in clinical trial enrollment and address social determinants of health in clinical care. To fulfill the second part of the mission, the South Florida Institute is using the real-world analytics platform of COTA Healthcare Inc. to understand how factors like ZIP code, ethnicity, and socioeconomic status contribute to inequality in cancer care.1
Gathering information on social determinants of health isn’t easy, Kalman said. “We’ve spent a lot of time trying to figure out how to collect those. Because what we’ve learned is, if you try to collect those by asking patients, it’s very hard to ask a patient in an interview, ‘Are you short of money? Did you have trouble getting here? Is your partner abusive?’”
Collecting the Data
This type of information makes its way onto the system, but only sporadically. A nurse navigator might find out some of these details, but they are not the data points that are typically captured in the electronic health record (EHR). For now, Kalman explained, MCI is using REDCap (Research Electronic Data Capture), an app that makes possible the secure management of online surveys and databases.2 REDCap allows the Institute to use a CMS-validated questionnaire, the Accountable Health Communities Health-Related Social Needs Screening Tool.3
“And now, we’re at…[a] place where patients can be asked” about food, transportation, utilities, personal safety, and general living conditions. The next step is figuring out how to best incorporate the questions into the workflow. Baptist Health uses the Cerner EHR platform, but right now, it doesn’t allow for the capture of answers to questions about social needs. “We’re trying to get it embedded in there,” Kalman pointed out.
Until that happens, patients might be asked the questions during the intake process. But what’s the best format? There are many options. “We can send them a link; we can send them an email; maybe we’ll catch them when they come in,” Kalman said.
Although a paper questionnaire may seem straightforward, someone has to upload the data. If patients were able to answer the questions on an iPad in the office, the data could be transferred easily.
These problems must be solved before a full picture emerges of the hurdles patients face. “We all have a sense that all of these things exist, but we haven’t had a way before of collecting this data. So, that’s a major focus—collect that data.”
A CMS Priority
Kalman’s information-gathering goal comes just as CMS is prioritizing health equity and data collection about social determinants of health. Throughout the spring, oncologists nationwide have been weighing whether to take part in the Enhancing Oncology Model (EOM), which is set to launch July 1. Many have expressed the same discomfort as Kalman with respect to asking patients directly about their food and housing. CMS has not wavered, however; in fact, after some confusion, it appears that the agency will require that the data be reported under the EOM.4
Developing a good data-collection model could prove critical for future reimbursement, as those familiar with the language in the Affordable Care Act that allowed CMS to create the Oncology Care Model and the EOM see a future when a similar model could be mandatory (SP395).
Diversity in Clinical Trials
The other pillar of MCI’s health equity initiative—reducing disparities in clinical trial enrollment—is being led by Manmeet Ahluwalia, MD, MBA, chief of solid tumor medical oncology and MCI deputy director and chief scientific officer. Kalman explained that the Institute’s clinical trial enrollment is unique relative to other US locations in that 60% of participants are Hispanic.
“What we’re looking at in clinical trial enrollment [is] where…there [may be] other deficiencies in terms of other [clinical trial] enrollment—of the African American population compared with the African American population that we see in the center in general. And, can we also have funds to recruit additional patients of Hispanic…or African American origin?”
It’s important to understand that even if an institution possesses the relevant data, resolving health equity issues is a very labor-intensive process that requires significant resources. Enrolling patients in a trial or helping them navigate complex care regimens takes staff and community educators “to go one-on-one with folks…[and] deliver on clinical trial diversity and…inequities in care.”
Learning From the Data
There’s much that Kalman hopes to learn from this initiative. Using de-identified patient data from the COTA database will help the Institute find out which patients are presenting with a later stage of cancer due to social determinants of health, he said.
As new and existing patients complete the questionnaire, “we can start to cohort people and decide which are the deficiencies—be it education, translation, insurance problems—and then focus on one or two,” Kalman said. “We can’t boil the ocean…but we…can focus on a couple of things that can make a difference.”