NCCN Summit Seeks to Build Better Connections Between Oncology and Primary Care

As the number of cancer survivors rises,¹ improving the experience of both active treatment and follow-up care has been a higher priority. But payment models of the past decade, which have added navigators and now require patient-reported outcomes,^2,3 did not address a hurdle that remains: improving communication between oncology and primary care.

Crystal Denlinger, MD | Image credit: NCCN

The National Comprehensive Cancer Network (NCCN) took on this challenge Tuesday with a daylong policy summit, “Primary Care and Oncology Collaboration to Improve Patient Outcomes,” held at the National Press Club in Washington, DC.

As an opening panel of experts weighed in, one thing was clear: for all the progress in cancer care, there’s a long way to go. Later in the day, Liz Fowler, JD, PhD, the former CMS deputy administrator and director of the Center for Medicare and Medicaid Innovation, offered an overview of what oncology models of the past decade achieved, along with what future models should do.

Liz Fowler, JD, PhD | Image credit: CMS

The Oncology Care Model (OCM) was “transformative,” and was heading toward a break-even point by the end of its 6-year run in 2022, she said. But it could not be certified because Medicare savings were not large enough to offset the cost of monthly payments for required services. The successor, the Enhancing Oncology Model (EOM), has a reduced payment structure and focuses on those cancers where adherence to the model yields the most savings.

“These efforts reflect progress but also underscore challenges ahead and are relevant for this conversation,” Fowler said.

“While OCM and EOM both promote better care coordination within oncology practices, such as through patient navigation and after-hours access, they don't directly address or evaluate integration with primary care. And as a result, opportunities remain to strengthen communication and shared accountability between oncology and primary care providers, especially for managing comorbidities and long term survivorship.” Future models could take on this challenge, she said.

Experts Outline the Work Ahead

Clifford Goodman, PhD | Image provided by NCCN

Guided by veteran health care consultant Clifford Goodman, PhD, the panel featured primary care doctors, oncologists, and a survivorship advocate. They ran through the list of what goes wrong when collaboration fails: tests are ordered twice, notes don’t make it into the electronic health record (EHR), and a fumbled discharge ends with a patient in the emergency department (ED), despite detailed instructions from the oncologist.

Skyler Taylor, MD, a hematology/oncology fellow at Mayo Clinic Comprehensive Cancer Center in Scottsdale, Arizona, said he’s discovered a workaround for when EHRs don’t talk with each other, and the patient is the only one connected to both portals. “It’s come up several times that I have to ask the patient for a result for a lab,” he said. “The patient has it, but I don’t.”

And yet, care after active treatment has improved greatly. A decade before she became president and CEO of NCCN, Crystal Denlinger, MD, chaired the committee that developed the first guidelines for survivorship care in 2013.⁴ Today, panelist Linda Overholser, MD, of the University of Colorado represents primary care on the NCCN Survivorship Guidelines panel. She runs a clinic with adult survivors of pediatric cancer. “I got involved with research and thinking about wanting to be a champion for primary care providers (PCPs) when they care for cancer survivors,” she said.

Surgical oncologist Andrea S. Porpiglia, MD, MSc, FACS, an associate professor at Fox Chase Cancer Center, said her institution implemented a program called Care Connect, which today allows more than 60 PCPs who normally would lack access to the Fox Chase EHR to log in and receive messages about their patients. Such a system would work for obstetrician/gynecologists as well, she said.

“I'm able to send a direct message to them, versus having to try a fax or phone calls. I think that's been a success,” said, given the large number of PCPs in the region.

Panelist Dorothy A. Rhoades, MD, MPH, professor of medicine and director of the Native American Center for Cancer Health Excellence at OU Health Stephenson Cancer Center in Oklahoma City, Oklahoma, warned that the coming “silver tsunami” will make survivorship care a routine feature of primary care. “We're going to have a huge population of elderly,” she said. “You’re going to have a cancer care survivor whose had all these treatments, and you’ll manage that as well.”

Veronika Panagiotuo, PhD, an 11-year cancer survivor, agreed. There are more survivors and they are living longer,^1,5 she said.

“There's 18.1 million of us, and the reality is there's going to be millions more,” said Panagiotuo, who is now director of advocacy and programs for the National Coalition for Cancer Survivorship. “We deserve quality care. We deserve the best care. And so, the guidelines continue to need updating so that patients are not frustrated by one physician saying one thing and another physician saying the other. It's very confusing.”

Goodman had started the discussion by asking what happens when there’s no collaboration between primary and oncology care. He then shifted to identifying the areas where collaboration is needed most, to reduce waste of time and money and to ensure that there are no treatment delays.

Understanding Late Effects. While percentages vary, studies have estimated that more than half of childhood cancer survivors have late effects, including cardiac and blood vessel problems, obesity, hearing loss, bone health problems, memory issues, and infertility.^5,6 Panagiotuo said cancer survivors need a PCP who is partner in their care, who can “walk us through not only the late and long term effects of treatment, but also our general health. ”Data from her organization show that primary care is underutilized among cancer survivors. When PCPs don’t understand a cancer survivor’s needs, she said, quality of life suffers.

“Why go through that rigorous cancer treatment only to come out the other end and not be able to experience and function and do the everyday things that we take for granted—like walking to the mailbox or showering without assistance?” These are the basics that the health care system should address, Panagiotuo said.

Later, when Goodman asked her list her top “wish” from more collaboration between oncology and primary care, Panagiotuo said, “We need less judgement, and more validation of our experiences.” Cancer survivors should be encouraged “to form a trusting relationship that will stand the test of time.”

Addressing comorbidities. As the population ages, there will be more patients coming to cancer treatment with preexisting health issues, especially common chronic conditions. “We know that cancer doesn’t happen by itself,” Overholser said. “If we’re treating their cancer, their diabetes gets worse, their high blood pressures gets uncontrolled—or they develop new comorbidities.”

It’s more important than ever, she said, “to think about health promotion and prevention strategies” By contrast, failing to connect the end of cancer treatment with good primary care results in “missed opportunities.”

“ We know that we can reduce future comorbidities by addressing late effects,” Overholser said.

Who’s the “quarterback?” Goodman shared a question from an audience member who expressed frustration in being unclear who has ultimate responsibility for good care. And the answers showed this is not clear cut.

“That sounds like something I’d say in the clinic,” Taylor said. “It resonates especially with patients who are kind of on the autopilot portion of their care. They’re taking their pill [and} they expect this pill to work for many years.”

If suddenly the patient has joint pain, “We have to make sure it's not related to the treatment we're doing,” and it’s not always clear who takes the lead.

Goodman asked if there were incentives that could embolden primary care to take control of survivorship care. Overholser said practices should be guided by quality metrics, but she also recommended that oncology groups align with professional societies more familiar to primary care, such as the American College of Physicians.

Handling the handoff. Poor transitions between oncology and primary are a top concern. These can occur during active treatment, if the patient is given a new therapy and needs follow-up care to watch for signs of infections or other adverse effects. Transitions also happen when the main treatment regimen concludes, and patients are on a long-term maintenance therapy that only requires a few visits a year to oncologist. Rhoades shared that PCPs sometimes don’t fully understand how to order scans ahead of the visit to the oncologist, and Overholser said poor coordination can leave PCPs in the dark about what treatment their patient received. “Then there’s a gap,” she said. “Primary car providers may not be able to implement good survivorship care.”

Dropped balls can be highly inconvenient for the patient, Rhoades said. If the right tests or scans are not ordered, “Imagine coming two and a half hours away to the cancer center and have something not be right,” she said. However, she said, small practices may lack the time and resources to navigate approvals, and there’s an assumption the cancer center has the resources to get things done.

Better communication—and better tools to allow this—topped wish lists for better care. Patient navigation matters, and Porpiglia said her lone wish is for a single EHR.

During her talk, Fowler said CMS worked to address the challenge of the handoff in a “team” model; like OCM and EOM, it would have been episode-based. “We specifically shortened the post discharge time [after] the hospital to make sure that the handoff back to primary care happened,” she explained.

At the outset, Denlinger said the key is to keep the dialogue going. “The problems are far too complex to address in one day,” she said. “We know how important this collaboration can be across the entire cancer care continuum, from screening and risk reduction through survivorship and end of life.”

References

1. National Cancer Institute. Statistics and graphs. Accessed May 7, 2025. https://cancercontrol.cancer.gov/ocs/statistics

2. Oncology Care Model. CMS. Updated June 27, 2022. Accessed May 7, 2025. https://www.cms.gov/priorities/innovation/innovation-models/oncology-care

3. Enhancing Oncology Model. Published July 27, 2022. Accessed May 7, 2025. https://www.cms.gov/priorities/innovation/innovation-models/enhancing-oncology-model

4. Ligibel JA, Denlinger CS. New NCCN guidelines for survivorship care. J Natl Compr Canc Netw. 2013;11(suppl 5):640-644. doi: 10.6004/jnccn.2013.0191.

5. Clancy E. Childhood cancer survivors report late effects 15 years after diagnosis. Cancer Therapy Advisor. April 7, 2023. Accessed May 7, 2025. https://www.cancertherapyadvisor.com/news/childhood-cancer-survivors-health-effects-15-years-diagnosis

6. Cancer survivors: Late effects of treatment. Mayo Clinic. Accessed May 7, 2025. https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-survivor/art-20045524