A panel at the NCCN Virtual Annual Meeting finds that while primary care physicians and oncologists can share information, records may not be well integrated and in easy-to-use formats.
When connections among oncologists, cancer patients, and primary care physicians are finely tuned, the results can be life-saving for patients like Felicia Harris, a 14-year breast cancer survivor. At one point, Harris developed breast cellulitis, a serious infection with a 105-degree fever. But Harris’ diligent record-keeping and her effort to share everything with all he doctors helped her primary care physician get on top of the infection quickly.
Today, a portal helps Harris keep her care team informed, since she still takes a medication for breast cancer. But things don’t go so smoothly for every cancer survivor, as Harris and a pair of physicians shared during a Saturday session of the National Comprehensive Cancer Network’s (NCCN) Virtual Annual Meeting.
Amy Senapati, MD, professor of Medicine, primary care physician (PCP) at UC San Diego Health and leader of their population health team, and Ronald Walters, MD, MBA, MHA, MS, medical oncologist at The University of Texas MD Anderson Cancer Center, offered perspectives on the shared role of the oncologist and PCP in managing cancer survivorship. Walters has been on NCCN’s board of directors since 2012, and Senapati, a breast cancer survivor, is a primary care representative on NCCN’s Breast Cancer Panel.
The good news: thanks to better screening and treatment, there are more cancer survivors than ever. According to the National Cancer Institute, there were 16.9 million survivors in 2020, and projections put the number at 22 million by 2030.
Now, the bad news: the ranks of PCPs are aging and dwindling. Meanwhile, the needs of survivors are intense. A poll taken among the those attending the online session found the ability of PCPs to get the right information to care for cancer survivors was uneven at best.
Part of the problem is the information itself. More than 10 years after Congress funded advances in electronic health records (EHRs), what reaches the PCP often doesn’t arrive in a digestible format, and that’s a problem for doctors whose job description is to bounce among patients with dozens of different conditions and needs on a given day.
Walters said instead of patients walking in with “500 pages of paper,” today the oncologist or PCP can get access of 500 pages in a PDF document, or, more likely, multiple PDF documents. “That tells you that we’re not there yet,” he said.
The situation reflects a lack of a unified health system, with freestanding cancer centers and patients who move, change jobs, or change insurance companies, requiring them to keep granting physicians access to records.
“Accessing all that information and giving us permission to access the information—that works fine now, but integrating it is still the difficulty and will remain the difficulty probably for a while,” Walters said. A new concept, he said, is a “cancer treatment summary,” which would outline what has occurred and state what tests would be needed later. NCCN, he said, provides post-treatment guidelines.
Senapati agreed, saying patients often bring up their acute condition, while “the longitudinal story, and what's most important isn't in front of me today.”
A PCP can sift through records to learn if what’s happening is related to prior bout with cancer—only to walk in the next door and see another patient with active cancer and multiple side effects. A patient with a thorough survivorship plan may also have lupus or HIV, and those conditions are complex on their own. Senapati said she works about 220% of her scheduled time to read through records before she sees patients.
“So, it's quite a bit of work, but what I love to do is clean out my box every day—every day,” she said. “I read down to the assessment and plan—every result I go through; I read the text including CAT scan, because there can be a mass in there and it was done for something else. So, I read through all of that in real time as it comes in.”
To keep up, Senapati does rely on her office team to help with patient outreach if there’s a test result that should be relayed by phone—although she does make some calls herself.
All three said that once a patient completes active treatment, it’s largely the PCP’s job to manage what’s next. Yet some patients with cancer are slow to grasp this.
“Most people do not realize that once you reach a certain length of survivorship, that your primary care is going to be your lifeline,” Harris said. Her doctor regularly reminds her to schedule a colorectal screening or order new compression sleeve for her lymphedema, for example.
Walters agreed that patients with cancer must reach the point of returning to their PCP for most of their care. He said Harris had done the right thing by going to primary care for her breast cellulitis, even though it was a complication of breast cancer treatment.
Having once worked in internal medicine, Walters said, “As an internal medicine doctor, if you came to me with a cellulitis, I would give you some antibiotics and possibly even admit you to the hospital. But as a medical oncologist, we don't necessarily think that's the best use of our time.”
Patients must take an active role in their own care, Harris said, citing her military upbringing and training as the way she learned to keep extensive medical records to bring from place to place. Today, she helps others do the same as a case manager.
Harris described how she coached a co-worker to stop using an urgent care for her medical needs and instead get a PCP; Harris, in fact, referred the person to her own doctor. The co-worker finally had an appointment and learned of problems that had gone unchecked. “And she appreciated that so much.”
“I said, ‘You’re going to stay on top of things, because I’m going to make sure you do.’”