Newly diagnosed cancer patients need help navigating the system

“Hey, I’m sorry to bother you, but I could really use your advice on something.”

As fellows in oncology training programs, we’re both accustomed to fielding texts, emails, and calls that start out like the above from family, friends, and acquaintances seeking guidance for themselves or their loved ones after a cancer diagnosis.

Cancer is not monolithic, and much of the care we offer in clinics today is incredibly complex. However, we frequently find that people reaching out in this suspected peri-diagnostic period (the time between a positive finding on a screening test and leading up to a formal diagnosis and treatment) are not looking for specific answers so much as they are seeking general support.

Patients want a trusted person to help provide a general overview of the journey ahead. They want someone to help them through the structural and logistical challenges of our cumbersome and sometimes unresponsive health systems. They would like triage on whether their case is common enough that they can access high-quality, convenient, and accessible community care, or whether their diagnosis warrants the specialized care available at large academic medical centers. They want guidance on what sorts of questions to ask their care team. They want to know if they should pursue second opinions, and if so, how to go about getting insurance approval or the mechanics of how to actually secure an appointment.

Essentially, they are looking for someone to help navigate them through their life’s abrupt left turn — something that our system simply does not offer.

The time leading up to a formal cancer diagnosis can be the most emotionally fraught and trying time of a patient’s journey. While the burdens of a cancer diagnosis don’t end with when a patient establishes a care relationship with a trusted oncologist, patients experience particularly acute anxiety, fear, confusion, and uncertainty as they await their final diagnosis and learn about what this will mean for their functioning, well-being, and lifespan. During this disorienting time, they have to become experts in a completely new landscape. The patients in our own clinics often take multitudinous and meandering routes to make their appointments with us. They frequently rely on their connections, index heavily on the prestige or name brand of a local institution, or spend significant amounts of time trying to self-educate themselves on the internet to try to make an informed decision. Sometimes, relying on informal and selective networks to fill in their knowledge gaps can lead to bias and worsening inequality in cancer outcomes.

We need to do better to best help our patients (and in fact one of us, SM, will soon be working toward this by joining a navigation startup). Patient navigation programs offer individualized assistance that can help patients access the right care in a timely fashion with concomitant psychosocial support along the way. These programs have been shown over and over again to bridge a variety of needs. While helpful for patients in all manner of conditions, a number of studies have proven the utility of patient navigation within the context of the peri-diagnostic period. For example, studies have shown that navigation can improve time from a positive screening test to diagnostic resolution, with shorter intervals associated with improvements in mortality. Further, across a variety of settings, patient navigation has consistently proven to improve retention in care, treatment adherence, patient well-being, and ultimately yield cost savings.

Given the enormous benefits that patient navigation has to offer patients newly diagnosed with cancer, with a positive return-on-investment to boot, it is astonishing that health systems have been so reluctant to implement and staff third-party patient navigation programs. Survey data shows that, to some degree, the poor uptake is explained by lack of clarity on patient navigator roles and responsibilities, even though patients themselves tend to be enthusiastic about the offering. For example, many health systems that have a nursing-led triage program may view non-clinical patient navigators as redundant, despite the differences in role and function. But there are two clearer challenges that have stymied progress and led to poor staffing.

The first is ownership. Unfortunately, for patients, cancer care is a continuum of multiple phases — prevention, screening, detection, diagnosis, treatment, survivorship, and end-of-life care. This construct can lead to care silos. Between the period of detection (“you might have cancer”) and diagnosis (“you have cancer”), patients can find themselves unmoored, without the guidance of a physician who “owns” the process. A formal cancer diagnosis involves a complex, time-consuming, process of obtaining and reviewing imaging, biopsies, and other advanced testing, carried out by multiple providers that include specialized radiologists, pathologists, and surgeons. Though there is heterogeneity in practice workflow, in general, oncologists traditionally see patients only after the formal diagnosis has been made, and thus play a limited role in the tumultuous period preceding a cancer diagnosis.

The second challenge is related to the business model. Despite studies that have made the business case for patient navigation programs, these programs are often underfunded or are available only in research settings or through pilot programs. This partly relates to a cultural issue in medicine, in which health care systems, prone to caution and incrementalism, can let proven ideas in care delivery die. But this also partly relates to a business model that does not clearly spell out the financial value to a payer. In a predominantly fee-for-service world, patient navigation programs often appear to be an additional upfront financial outlay to the payer, and despite mounting evidence to the contrary, payers may underestimate the value of downstream financial benefits.

These challenges are thorny, but favorable market tailwinds, including the growing prevalence of shared-risk contracts between payers and providers, and the rise of remote-friendly and telemedicine-enabled teams may help surmount them. Contracts that share financial risk between payer and provider allow providers more flexibility to start up programs that don’t have an immediate financial payoff. Telemedicine and remote work enable these programs to virtually follow the patient from the beginning, serving as a guidepost throughout their journey, untethered by the cumbrances of a physical primary care, oncology, or palliative care clinic. This summer, one of us (SM) is joining the team at Thyme Care, a virtual patient navigation service that can provide wraparound coverage for patients with a diagnosis of cancer, which is solving for these very challenges.

Policymakers often find themselves confronted with decisions that save money, yes, but also take away something of value for patients. But patient navigation is a rare intervention that truly seems to achieve a win for every stakeholder – patients, providers, and payers. With growing evidence supporting the importance of patient navigation for those with cancer, this will hopefully evolve from a nice-to-have intervention to a must-have.

Samyukta Mullangi is an oncology fellow at Memorial Sloan Kettering Cancer Center. She is an incoming medical director at Thyme Care, a cancer navigation and population health management company. Vinayak Venkataraman is an oncology fellow at Dana-Farber Cancer Center and Mass General Brigham Cancer Care. He is an incoming medical oncologist at Dana-Farber Cancer Institute with focus in bone and soft tissue sarcoma and in adolescent and young adult cancer care.