By Clarissa Donnelly-DeRoven
During radiation treatment for cancer, a massive machine shoots beams of energy directly at the tumor site in a patient’s body. The goal is to destroy the genetic material of the cancer cells, those genes sending garbled signals telling cells to reproduce uncontrollably. All this needs to get done while doing as little damage as possible to healthy neighboring cells.
A feat of scientific innovation, radiation treatment can be brutal on a person’s body — causing hair loss, fatigue, nausea, pain and more.
It can also wreak havoc on a patient’s schedule.
“Radiation treatment for some patients can be every day for six weeks,” explained Beth Smith, a nurse navigator at the Cone Health Cancer Center in Greensboro. “That’s transportation to and from every day. We have a good number of patients who don’t have cars, so they’re dependent on friends, family, neighbors, public transportation. And you can imagine that wears thin if you have to come every day.”
The team at Cone has long known that many of their patients struggle to get to their daily radiation appointments. But a handful of years ago, they realized that struggle was not evenly distributed.
On average, patients receiving treatment at the cancer center had an appointment no-show rate of about 3 percent. But, for patients who lived in two ZIP codes — which corresponded with a low-income, predominantly Black area of Greensboro — those patients had no-show rates between 12 and 15 percent.
“What we found should have come as no surprise, yet we were still shocked,” wrote Rachel Marquez, the director of Cone’s transportation program, in an article for the journal Oncology Issues.
Patients not showing up for appointments, especially for an intensive multi-day treatment series, is often accepted and expected. Marquez and her team at the cancer center decided they weren’t okay with this standard and wanted to do something different.
“Instead of reacting to patients’ needs after they fall out of compliance with their specified treatment, we pledged to proactively offer and find transportation assistance that meets all patient needs,” Marquez wrote.
In short, they decided to offer patients a ride.
“Have you ever had to go without healthcare because you didn’t have a way to get there?”
First, Marquez’ team created a screening tool to ask patients, who lived in the two ZIP codes with high no-show rates, about their transportation needs before they began missing appointments: In the last month, did they have to go without healthcare because they didn’t have a ride? In the last year, did a lack of transportation keep them from medical appointments?
For people who answered yes, the staff organized for rides that met the need: a rideshare service (Uber and Lyft, for example), a wheelchair accessible vehicle, or a non-emergency medical transportation provider.
Patients, as before, were also connected with a nurse navigator, like Smith. Nurse navigators usually make sure patients understand their diagnosis and treatment plan, that their appointment times work for them, and help them access other support as needed. During the study, nurse navigators also helped connect patients who qualified with the transportation program.
If a patient was assigned Smith as their navigator, they also received a sort of enhanced navigation experience.
“One of the other interventions that was part of the study was what we called the real time registry,” Smith said. The real time registry was connected to patients’ electronic health records and it proactively generated messages for Smith about a patient. It told her when they had an upcoming appointment, what treatment milestones they were approaching, as well as if they’d missed an appointment or a milestone.
The other nurse navigators had access to the same patient information, but not the automatic updates.
“They relied on whatever method they used to remind themselves,” Smith said. “My approach was a little more proactive.”
Meaning she could anticipate potential problems and address them.
A clear success
The pilot phase of the project lasted from June to September 2019. Over the four months, 47 patients received a collective 419 rides.
“Overall no-show appointments for the cancer center decreased by 48 percent, from 6.1 percent to 3.2 percent,” Marquez explained. Before the program’s implementation, patients who lived in the two ZIP codes had average no-show rates between 12 and 15 percent. After the program’s implementation, the no-show rates in those same ZIP codes dropped to 1.2 and 1.3 percent.
Decreased no-show rates meant more patients received more – and more consistent – treatment. There were psychological benefits too.
“It decreased the amount of stress,” Smith said. “Because they are not having to worry day to day about how they’re going to get to and from their appointments.”
Also, in decreasing the amount of no-shows, the hospital saved a significant amount of money.
“Our cancer center was projected to lose $69,557 in revenue during that four-month period” from no-shows, Marquez wrote. “Transportation costs for the pilot program totaled $6,166, with an average ride cost of $14.72. Therefore, we calculated our return on investment on the four-month pilot program to be $63,391.”
Why isn’t this the standard?
It’s such a simple solution: provide transportation to patients who need it, increase access to care, decrease lost revenue from missed appointments.
So, why did it take so long to figure out? And why isn’t everyone else doing it?
“Oh, man. I think that that’s a really interesting question, and I think there’s lots of layers,” Marquez said. “I think the first layer is really around costs.”
For starters, the transportation program is free.
“That means that there’s a commitment from the health system to pay for transportation and not expect anything in return,” she said. There can be a fear, she said, that by providing free services, such as transportation, a hospital is going to put itself in a financially precarious position and end up not being able to spend as much money on services.
The Cone Health study, though, shows that’s not the case.
In a broader sense, there’s also consensus now that many of the things which have the largest impact on people’s health come from so-called social determinants of health.
“What we know,” Marquez said, “is that 80 percent of what makes up someone’s health happens outside of medical care. Medical care is only 20 percent. So if we’re not understanding all of the nuances within the 80 that can affect your ability to do the 20, we’re doing a disservice to you as a patient.”
That type of research forms the basis for North Carolina’s Healthy Opportunities pilot, which, starting this spring, will provide about $650 million in Medicaid funding to see how people’s health could be improved by helping them access non-medical services, such as housing support, healthy food, and transportation.
It can be complicated for health systems to give patients anything for “free.” Some federal policies, such as Stark laws and anti-kickback statutes, make it illegal for a hospital or health care system to do anything that might “induce” patients to receive services at their facility versus another.
“[The Centers for Medicare and Medicaid Services] does not want patients to be influenced because of freebies that they get in selecting their care,” Marquez said. “They want people to make autonomous decisions about their care, picking the best provider for them.”
But within the anti-kickback statutes, there are “safe harbor” provisions, which explain that health care providers can do certain things for patients – for free – within reason. Providing transportation to rural patients who live within a 75-mile radius of the facility falls within the safe harbor provision — so long as that transportation isn’t in a limousine or some other sort of luxury vehicle.
Approaching medical care from this holistic viewpoint requires a fundamental frame shift for many, Marquez explained, moving from reaction to prevention.
“That’s been how our health systems have been set up, to treat you once you’re ill instead of preventing an illness before it begins,” she said. “What has happened is we put a lot of ownership for that on the patient.’”
Patients missing appointments or not getting their medication often are labeled “non-compliant” or “non-adherent.” A recent study in Health Affairs by researchers at the University of Chicago found that Black patients are two and a half times more likely to have these negative descriptors — “non-compliant,” “aggressive,” “unpleasant” — written in their medical records than white patients.
“Use of the term “non-compliant,” for instance, does not carry neutral connotations,” the authors write. “Race-based differences in treatment compliance often reflect underlying structural challenges (for example, medical distrust or financial hardship) rather than individual patient motivations or behaviors.” They can reflect transportation barriers, too.
Smith, the nurse navigator, attended an intensive anti-racism seminar as part of her preparation for the enhanced nurse navigator role. A lot of things stuck with her from the training, but perhaps the most notable is a metaphor about a fish in a lake.
“If there’s one fish that floats to the top of the lake, you think there’s something wrong with that fish. But then when you start seeing lots of fish floating to the top of the lake, then you realize there’s something wrong with the lake,” she said.
If 15 percent of cancer patients from one ZIP code are missing their appointments, maybe it’s not their fault. Maybe something’s wrong with the environment.
“The [exclusive] focus on medical concerns is what we’ve done for the last 60 years. It has gotten us to exactly where we are, living in a state of health inequities, with the burden of illness being on particular populations of our community,” Marquez said. “We have to look at holistic care and stop blaming patients for not adhering to a care plan.”
In March 2020, the team expanded the transportation program to Cone Health’s entire system. Smith has taken on a managerial role with the nurse navigators and implemented new standards on proactive contact with patients, similar to the ones she used during the study.
With the pandemic, there have inevitably been bumps in the roll out. So far, they’ve provided 10,000 rides to patients who needed them, and helped free up staff and space.
“Getting healthy people out when they’re ready to go home is vitally important, especially now at the time of a surge,” Marquez said.
“Transportation plays a huge role in that because what we find is, patients might have a ride home, but it might be their loved one who gets off work in eight hours,” she said. “So that’s eight hours that a bed is occupied that somebody else has to wait.”