From taking part in clinical research at a local location to foregoing aggressive therapy in favor of quality of life, patients with cancer are seeking new options, said panelists at the 2022 Annual Conference of the National Comprehensive Cancer Network (NCCN).
The days of organizing cancer care around what’s convenient for the doctors and nurses instead of the patients are over, according to panelists who took part in the session, “The Patient Journey: Access to Care,” on the opening day of the 2022 Annual Conference of the National Comprehensive Cancer Network (NCCN), being held as a virtual event.
Moderated by Timothy Kubal, MD, MBA, of Moffitt Cancer Center, the panel featured:
Hammon began the discussion with the story of her father’s decision to forego aggressive treatment upon learning he had high-risk myelodysplastic syndrome, after living with bladder cancer for more than 5 years. Hammon’s father lived more than 2 hours from her in Florida, but he came to Moffit to see Kubal for the diagnosis. It was November 2019, and Hammon’s father was given a life expectancy of less than 3 years.
“His desire was for treatment was dignity, respect, honesty, partnership. He wanted little disruption to my mom. He wanted to be close to home. And he would trade a little bit of smarts for a lot of heart for his oncologist. And we didn't have to trade anything because we got both,” Hammon said.
Her father wanted to stay active, caring for his trees and seeing family and friends as along as he was able. “We talked about clinical trials; we talked about him coming to Moffitt and living with me and my family for a period of time. And he was clear that was not the option that he wanted.”
Instead, Hammon’s father found a local oncologist who consulted with Moffitt, and through virtual visits, local lab work and oral chemotherapy, stayed out of the emergency department and the hospital. His care was not typical, and there were “some bumps along the way,” she said. “But there were about 6 months where there were no transfusions, no platelets, no blood, and he was able to live a very active, productive life—high quality, just enjoying the rest of the time that he had.”
Hammon’s example may represent one extreme of the patient journey, but Souza, Chiang, and Shulman described models of care and participation in clinical trials that offer new ways to receive care and participate in research on terms far different than would have been allowed in the past.
When the pandemic forced new ways of doing things, it showed that patients could safely take experimental oral drugs at home, get lab results taken outside academic centers, and even receive drug infusions at home. And for some, there’s no going back.
Network evolution. Souza outlined the evolution of the MGH Cancer Center Network, which is centered in Boston and spreads north to southern New Hampshire and southern Maine, south to Nantucket, and west to Newton and Wellesley. The system is anchored by 4 key MGH facilities closer to Boston—known as “the quad”—with several non-MGH affiliates further out offering some services closer to patients.
The pandemic was a key event for this network, Souza explained. “Having 4 national cancer center locations within 20 miles of each other allows the cancer center leadership team to leverage each site for maximum utilization, to provide the right care for the patient at the right site at the right time,” she said.
“The value of the integrated system is highlighted by our ability to seamlessly facilitate care for patients across our system,” as physicians can see patients at 2 separate locations across the system—and not everyone had to go to Boston for specialized care during the pandemic. In fact, the percentage of patients with cancer seen in Boston has been reduced since 2019.
Souza described the network as a work in progress. “We still have to do to ensure that each network location is providing the same level of quality care,” she said. “We are focusing on pathways implementation, unified safety reporting, and further development of a guideline-driven care model as we move forward to the future state of the National Cancer Center Network.”
She highlighted ongoing challenges the network faces, which include patient willingness to accept care at the community level.
Clinical trials across a network. Chiang then discussed the expansion of clinical trials across the Yale/Smilow network, which occur at 15 different centers across Connecticut and Rhode Island. “From the very beginning, the vision was to include clinical research as a quality are a way to provide cutting-edge cutting-edge technology and opportunities for patients where they live,” she said.
Patients with cancer are enrolled in a mix of trials sponsored by industry, by grants from the National Cancer Institute, and by investigator initiated trials, Chiang said. New grant monies are allowing patients to be screened remotely for their possible participation clinical trials, with the hope of increasing diversity in studies. To no surprise, the research sites with the highest number of accruals have the largest portfolio of trials—these are the half-dozen “research champions.”
“Physician engagement is, of course, key to everything that we do,” Chiang said.
A monthly clinical research working group reviews trials and decides which ones will be added to the portfolio and invites disease teams to discuss trends. Community physicians may be invited to become principal investigators to help fill gaps. Disease-specific “retreats” will review research portfolios. COVID-19 was disruptive to all this collaborative, Chiang said, but these processes are getting back on track. Levels of patient accrual in trials track the disease types in the community—such as breast, lung, and gastrointestinal cancer—but some subspecialties, such as neurological oncology, are increasing because of individual physician champions.
“The bottom line here is that these relationships are really robust,” she said. “Of course, this boosts our referrals. But it also boosts the meaningful relationships and helps with engagement.”
Care at home. Shulman presented Penn’s efforts to bring care into the home, which launched slowly in the months before the pandemic and then took off—from only 50 referrals a month to around 450 a month.
“So, why move cancer care to the home?” Shulman asked. Referring to Hammon’s discussion of her father’s wishes, “We want this to be a better patient experience. We want to improve the clinician experience.”
Shulman said, care in the home can allow Penn to “improve our capacity to provide world class care to a broader reach of patients in a broader geographic area.”
He cited a study by a Penn fellow that found in the last month of a patients’ lives, they spent 10% of their time in health care encounters, with each one lasting an average of 4.6 hours—and more than half of that was commuting or waiting. “That’s a lot,” Shulman said.
Almost every other industry has adjusted to allow consumers to spend just a few minutes obtaining the service without long waits, but medicine has not—and this has profound impacts on patients and their lives, he said. The pandemic demonstrated things can be different, but that doesn’t mean the shift will be easy.
At least for now, the administrative part of care in the home is tougher, Shulman said. “There's a lot of issues with preauthorizations, which turned out at least in our market to be different for hospital and home infusion, so you’re doubling the preauthorization times. And the payers often don't understand why some of the treatment is in one place, and some in another.”
As Shulman would explain, for safety reasons, an initial round of chemotherapy would be given in the hospital to see if the patient has a reaction. But if things go well, future rounds could be infused at home. Scans and other tests would still need to be in the hospital. He and Chiang discussed during a question and answer session how physicians still need to see patients—but a hybrid model could represent the future. To be sure, there are huge staffing and education challenges at a time when nursing shortages are already acute. And that assumes health systems can overcome the challenge of integrating all this into the electronic health record (EHR).
None of these problems are trivial, given that medical staff are already taxed from burdens of the pandemic. But the bottom line, Shulman said, is that patients like care at home. Satisfaction scores increased. One barrier, however, is that patients may be charged higher out-of-pocket costs, and that is a problem that must be resolved. Given the capacity at infusion centers, he said, it’s worth doing.
“Treatment can take place at home with high patient satisfaction levels and time saving for them and can also free up the clinic and the infusion capacity,” Shulman said.