What Is in the Future for Oncology Patient Navigation?

June 2019 Vol 10, No 6


Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Co-Founder, AONN+; Editor, JONS; University Distinguished Service Professor of Breast Cancer, Professor of Surgery, Johns Hopkins University School of Medicine; Co-Developer, Work Stride-Managing Cancer at Work, Johns Hopkins Healthcare Solutions

This is an interesting question to ponder. To begin seriously thinking about the future, with all of its potential bumps, twists, and turns, and analyzing the possibilities, we need to first know where navigation came from. It has been said that you can’t really figure out where you are going unless you already know where you have been, and why. So let’s begin with reflecting back to the origin of navigation. When and why did it begin? How did this happen?

There are actually 2 pathways that we need to know about that relate to the origin and history of navigation: patient (lay) navigation and nurse navigation. Harold P. Freeman, MD, is known as the Father of Patient (lay) Navigation, which began in Harlem Hospital in New York City. He worked as a breast surgeon and was witnessing a high mortality rate among underserved African American women who were being diagnosed with neglected advanced breast cancer. These women’s tumors were quite advanced when finally diagnosed, setting them up for horrific treatment, after which many were still going to die. This type of situation can result in a catch-22—other women hear that their friend went to the hospital, was diagnosed with breast cancer, and died soon thereafter. As has happened elsewhere across the country, there was little incentive for these women to go to the hospital to get screening mammograms because they assumed that if they had cancer, they would experience difficult treatment and would die anyway. So why go? Dr Freeman’s mission was to educate women where they lived, sending lay navigators (what some institutions refer to as community case workers) into these underserved communities and educating them in the value of early screening so that cancer could be caught early, often resulting in less treatment and much higher survival rates. He certainly accomplished this goal, and the mortality rate declined among African American women being shepherded into mammography screening facilities. The case workers knocking on these doors also lived within these communities and were African Americans themselves, demystifying the scary image of doctors in white coats who were there to disfigure women and cause them to be experimented on for the sake of science. These efforts took place in the beginning of the 1990s and continue to this day. This has been some of the most effective community outreach achieved because it was conducted by women from the community they lived in reaching out to help their neighbors, church members, and friends as trusted community members. Knowing they could trust the person at the door, and eliminating common barriers such as transportation, resulted in this model being successful for achieving earlier diagnoses and therefore reducing mortality.

Nurse navigation took a different path. Its roots go back to the early 1970s, when utilization review nurses were hired by Medicare, Medicaid, and some other third-party payers for the purpose of retrospectively reviewing medical records to determine if there were any barriers to the patient’s treatment or timely discharge. If barriers were identified that resulted in delays in care or departure from the inpatient bed, then payment for these days would be carved out of the sum the hospital and the doctors would receive from the government (Medicare/Medicaid) or the patient’s insurance company. This was an adversarial relationship between these nurses and the hospital and doctors who took care of the patients. It was common for hospitals to employ their own nurses to also retrospectively review the same medical records to identify the same issues in the hope that they could get the doctors to retrospectively provide a reason that would justify the care rendered. For example, a patient may not have gone home on Friday as planned because he spiked a fever that warranted additional workup. However, if that same patient needed a scan done as part of the evaluation to determine the cause of the fever, and this scan couldn’t be done until Monday morning when radiology reopened, the weekend days that the patient remained in the hospital might not be fully covered financially because of inefficiency in the delivery of care. Some common barriers that resulted in carve-outs of payments were lack of transportation for the patient to get home, delays in tests being done, delays in surgical procedures taking place, no available nursing home beds to transfer a patient to a lower level of care, and the patient’s frank refusal to go home because he or she didn’t feel adequately prepared for home care. The government and other insurance carriers did save a lot of money by conducting this type of retrospective chart review.

In the early 1980s, utilization review evolved into utilization management. The primary change was that nurses were now reviewing the inpatient medical records while the patient was still in the hospital. Known as concurrent medical record review, the goal was to identify barriers to care as well as, potentially, a patient having a lack of medical necessity to still be occupying an inpatient bed. If problems were found, they would result in the hospital and the treating physician receiving a letter commonly placed on the front of the patient’s chart requesting a documented explanation for the delays in delivery of care or for the absence of details in the chart describing the patient’s medical condition that warranted inpatient hospitalization. It also resulted in the hospital utilization management nurses having conversations at the nurses’ station with the third-party payer utilization management nurses in the hope that the hospital nurse could speak with the doctor and get the needed documentation into the medical record that same day. Still, this was an adversarial relationship. Doctors felt punished for hospital system delays that they had no control over.

In the 1990s, utilization management evolved into case management. The hospital utilization management nurse now was a case manager and served as part of the multidisciplinary treatment team. She was responsible for patient education, discharge planning, making the appropriate referrals and helping to ensure they took place in a timely manner, and maintaining contact with the patient to help prevent an unplanned readmission to the hospital. A good example would be a patient admitted for a stroke. Based on the severity of the stroke, the case manager might be very proactive and make contact with a rehab facility or nursing home soon after admission rather than follow the prior method, which was to try to find a bed at one of these facilities after the doctor had documented in the chart that the patient was ready for discharge and transfer to another facility for continued chronic care. The case manager was no longer functioning as an adversary to the hospital or the doctor but instead as a trusted member of the treatment team. Case managers also began springing up within insurance companies, but there remain mixed opinions if these individuals are more utilization management nurses versus case managers, there to support the patient and get their tests precertified promptly, as well as arranging and approving home healthcare to begin promptly upon discharge. They do focus on promoting cancer screenings, but patients are commonly leery of their insurance company calling and saying they are “here to help.”

In the mid-1990s, it was clearly recognized that although community outreach was helping to get women in for screening as well as diagnostic mammograms, women diagnosed with breast cancer were not necessarily getting the care they required and might fall through the cracks and not get all the treatment needed in keeping with the National Comprehensive Cancer Network treatment guidelines. So the idea of having someone at the patient’s side from the beginning to the end began to surface, and these individuals were referred to as oncology nurse navigators or oncology care coordinators. These nurses also served as the patient’s advocate, a trusted person for the patient to use as a touchstone and confidante, and the professional who could offer answers to questions, patient education, psychosocial support, caregiver education and support, and of course identification of barriers to care and treatment and elimination of these barriers.

You can see that the breast cancer patient population was where navigation—lay navigation and nurse navigation—began, but it was quickly seen that breast cancer patients were not the only cancer patients who could benefit from having someone navigate them from prediagnosis on to diagnosis, treatment decision-making, each phase of treatment received, and then navigating them on to short- and long-term survivorship or end of life. Navigation also wasn’t reserved just for those patients who were underserved either. It became apparent that in the fragmented healthcare environment that exists in the United States, with its high copayments and deductibles, anyone diagnosed with some form of a life-threatening cancer could benefit from having the support of a navigator. Navigators became very active members of tumor boards, oftentimes actually running the tumor boards and speaking up when specific patients they were navigating were discussed.

Today, there are various individuals who perform navigation tasks and functions—patient lay navigators, nurse navigators, social workers, financial counselors, and some would argue that anyone taking care of a cancer patient plays some role in navigation. Getting a patient scheduled for specific appointments and tests is part of navigation and may be done by an appointment scheduler or a lay navigator. Identification of barriers to care and treatment is conducted by lay navigators, nurse navigators, and social workers. Elimination of barriers might be done by an even broader group of people, including those who can help provide financial resources for patients who otherwise may decline treatment because their out-of-pocket expenses are not affordable.

In recognition of the value of navigation, the Commission on Cancer (CoC), which accredits cancer centers, even created standards requiring that a navigation program be in place for cancer patients seen and treated at the facility. Note it says “navigation program”—it does not say that the cancer center needs to hire people called patient navigators or nurse navigators. That’s an impor­tant differentiation, because some cancer centers have merely looked at a nurse across the room and said, “You, you are now going to be our nurse navigator.” No job description. No clear goals. No structure. Such models do not work, however.

There was very clearly a gap in the professional oncology navigation practice and a need for opportunities for professional development and for establishing evidence-based practice standards. With this in mind, I co-founded the Academy of Oncology Nurse & Patient Navigators (AONN) with The Lynx Group in 2009. AONN was originally a professional organization for oncology nurse navigators, but a few years later we realized the importance of being more inclusive and expanded its membership to include patient lay navigators, social workers, financial navigators, genetics experts, and administrators, thus adding the “+” to AONN. Some philosophies were adopted and implemented that I felt were very important. They were and still are tied to the navigator serving as the patient advocate. If we are serious about delivering patient-centered care, then we must know a lot more about the cancer patients than their test and biopsy results. The patient is more than his or her pathology. We need to interview patients, going beyond just deciphering what barriers to care they may have, and discuss with the patients the type of work they do, if they are in a relationship, if they have a family of their own, what milestones might be happening in the coming months that are significant (like a daughter’s wedding), and, finally, know what their life goals are for the future. Where do they see themselves in 1 year, 5 years, 10 years? We need this information so treatment planning can factor these milestones and life goals into the planning process rather than ignoring them, resulting in the patient having to sacrifice them to cancer. Really, the patients would be sacrificing these goals to their multidisciplinary team members who were too focused on the cancer and less focused on the patient being a person with a life of hopes and dreams for the future. For example, a young adult might be engaged. We need to work around her wedding date so that she is feeling well that day and the days immediately before and after so that this significant milestone is preserved and enjoyed. If she hopes to have a family in the future, a referral to fertility preservation experts is needed soon, and long before chemotherapy gets underway, or she will sacrifice becoming a biological mother due to poor planning on the part of her treatment team. A woman working as a bank teller but who is privately studying to become a concert pianist, which isn’t a question asked on a standard intake form, needs to be kept out of harm’s way from chemotherapy agents that will cause peripheral neuropathy, or she will likely never fulfill her career goal. Her passion. Her greatest joy, that of playing a piano on a stage in front of thousands of people one day.

So now we know what our history is regarding navigation. What might be the next evolution of this profession? AONN+ has invested a great deal of time, financial resources, and work performed by true experts in the field to prepare us for this next evolutionary process. We have learned that no 2 navigation programs look the same. No 2 navigators function in the exact same way either. Although some of this is unavoidable, some of it is because of a lack of solid structure, processes, and outcomes within cancer centers to truly understand what navigation is and can be for their patients and their institution. There is also the need to make sure that onco-politics don’t govern what navigators are doing. We have heard repeatedly the horror stories of navigators standing at fax machines, being on hold with insurance precertification offices for hours, serving as the grunt worker for a specific surgeon, and feeling devalued by the professionals they work with in a given clinic every Wednesday afternoon. This is because things went haywire from the very beginning. As stated, with no structure, processes, or outcomes in place, a navigation program can be doomed from its inception. AONN+ has created metrics to ensure that navigation can be effectively and accurately measured for the true value it provides. We have developed certification for nurse navigators and patient lay navigators to help ensure that navigators have the education and training needed to perform their most basic navigation functions. We are now knee-deep into creating an acuity scale program because we know that navigating a cancer patient with advanced pancreatic cancer is very different from navigating a woman with early stage I breast cancer. In addition, if the patient is underserved, can’t take time off from work for financial reasons, or has cultural beliefs that impede the treatment team from providing the patient what is needed to be well again, the acuity levels are across a wider scale than realized. Administrators are always asking, “How many navigators do I need for my cancer center?” without even knowing the number of cancer patients seen and treated there annually, the stages of their disease, races, ethnicities, rural versus urban residents, most common barriers to care, etc. All of this type of information is needed to come up with the desired answer. When navigation begins and ends must also be known. Is it a tandem team of navigators taking care of the patient, passing the patient along to the next navigator based on the phase of treatment they are completing and the one they are about to begin? Or does 1 navigator remain at the patient’s side from prediagnosis/diagnosis all the way through to survivorship/end of life? The workloads are very different. One navigator does not fit all navigation programs.

Who the navigators report to also influences the tasks and functions they perform. Some navigators report to finance people, others to nurse managers, some to oncologists or surgeons, others to someone in social work, etc. These reporting relationships influence the goals of the navigation program. It is no surprise then that a financial supervisor wants to see a return on investment from the navigator reporting to him or her. Merely saying patients were happy to have a navigator helping them is not enough.

As we look into the future, several issues need to be watched closely and evaluated. Will the time come when navigation services will become a formal billable service? If navigators are able to demonstrate through measurable evidence-based metrics that are consistently applied that what they are doing translates into improved patient care and cost-effective delivery of care, then the answer should be YES. However, if bundled payments become the wave of the future, with hospitals having to decide what they want to include in that bundle, we need to be ready to clearly demonstrate our value—to the patient, the payer, and to the institution. As an organization, we want to be front and center as legislative decisions are made focusing on this issue. Pay for performance is still being discussed, with quality of care and efficient delivery of care being critically important to third-party payers. Soon, gone will be the days that whatever the doctor ordered was a covered service. Physicians and hospitals have for decades been rewarded for doing more care and treatment. This is coming to an end. Only necessary treatment will be considered for payment. We are also rapidly moving into an era where at long last the Hippocratic Oath is being revisited—DO NO HARM. Why have we been giving 88-year-old men with heart disease, asthma, and diabetes 9 weeks of radiation and hormonal shots every 3 months for treatment of their very slow-growing prostate cancer? Prostate cancer was never going to be what would cause this patient to die. His numerous comorbidities instead would be what would cause his life to be over. In the meantime, he would develop urinary incontinence and brittle bones at risk for fracture due to having gotten traditional prostate cancer treatment he really did not need. So part of the education that a navigator provides to a patient and his family may very well be regarding the reasons the patient won’t be getting aggressive treatment for his newly diagnosed cancer.

Will there be 1 job description universally used for patient navigators and for nurse navigators? Very doubtful. As mentioned earlier, there are no 2 cancer centers or cancer programs that function in the same way. Encouraging cancer centers to create appropriate structures, processes, and outcomes, however, may be achievable through the CoC so that there are some basics that apply to all navigation programs. Currently, we are still functioning in a world where the job description might be right, but the reality is that the job description isn’t followed at all because of hidden agendas and other priorities of the institution, and what the immediate supervisor had in mind when the person was hired.

Will navigation remain exclusive to oncology cancer care? No, I don’t think so. There are many patients with chronic diseases and disorders who would benefit from navigation. Actually, the sooner we start considering a diagnosis of cancer as being a chronic illness, the better we will be able to navigate the patient across the continuum of care. So there will be, and in some hospitals already are, diabetes nurse navigators, cardiac nurse navigators, high-risk XYZ nurse navigators, respiratory nurse navigators, etc. We will want to share with them what we have learned thus far as the pioneers in the field of navigation. No doubt they will teach us a few things too about how to prevent unplanned readmissions to the hospital, better patient adherence to oral medications, and other familiar navigation challenges.

It is anticipated that there will continue to be a shortage of oncology specialists, of primary care providers, and general surgeons across the country. And because of the baby boomers being in midlife now, the number of people getting diagnosed with cancer is on the rise. This means these doctors will and already do have less time to spend with their patients. This is a gap navigators fill and will need to continue to fill by reiterating the information the doctor verbally told the patient and helping the patient and their family process this information, addressing their questions about its content, helping them actively participate in the decision-making about their treatment options, getting needed referrals arranged, and keeping the patient on track throughout the cancer journey. This also includes when they transition to long-term survivorship care and are back with their community providers. Patients will also need to be empowered with information to assume more self-management related to recurrence risk and monitoring for other new primary cancers springing up. The AONN+ Survivorship Committee is working in this space to prepare us for what is needed now as well as what navigators and our patients will need in the future.

Although transportation has been the most common barrier patients experience in the United States, financial barriers are growing and will or have already surpassed the need for arranging for a ride for our patients to get to their treatment location. We will need to have more resources than we currently do to help patients with their financial barriers, which may require thinking outside the box on our part. For example, you may have an advocacy organization that can provide food for the patient and their family while she or he is getting their chemotherapy treatments. This patient doesn’t need food though; rather, help is needed with paying the bills due to missing time from work resulting in a smaller paycheck. There are 2 things you can do to help address this financial need: You can work with the treatment team to arrange for treatments that enable the patient to work as much as possible, arranging for radiation at 7 am instead of 2 pm, thus enabling the patient to get treatments before going to work each day instead of having to leave in the early afternoon. Another way to eliminate the financial barriers is to sit down with the patient and the appropriate family members and discuss the household budget. Go ahead and arrange for the patient and the family to receive food from the advocacy organization and reallocate their household budget for food to cover their gas and electric bills along with their copayments for prescriptions.

The need for you to become very savvy about the newest treatment options becoming available for your patients is also going to grow. For several different types of cancers, brand-new drug categories have been developed and are proving to save lives or extend the life of cancer patients beyond what was possible in the past. From a physiological perspective, these new drug classifications are very complex and require you to learn new biological concepts that were not known before. You need this knowledge, however, to educate your patients and help in the decision-making about the treatment options they face. We are truly in a new era with precision medicines.

Technology continues to be a booming area for life in general, and it will continue to have a major role in how we communicate and document what we have done for our patients from a navigation perspective. Remember, if it isn’t documented, then it is considered that it wasn’t done. For medical and legal reasons, we must remain steadfast in documenting the navigation tasks we perform. Technology in the future should afford us easier ways to document as well as communicate with our patients electronically. Today, most institutions have MyChart for communicating with their patients. This provides effective interactions so that appointment reminders happen, patients can report side effects or other medical issues as they arise, and test results are accessible to patients; the patient’s clinical chart is also readily available. We are moving into an era where smartwatches, smartphones, and other smart devices will be able to track and record more clinical information about our patients. Eventually, it will even be possible to see that the appropriate blood level assay of specific drugs is at the level it needs to be to properly work within a patient’s body, which means there will also be more reliable electronic ways to ensure patients are taking their medicines as prescribed. The AONN+ Technology and Innovation Committee is staying on top of these breakthroughs to see when they may be available for local, regional, and national application. More and more electronic communication will be happening with Skype and FaceTime instead of needing to see the patient face-to-face in the doctor’s office. This includes patients not necessarily coming to the doctor for their routine follow-up visits. With vital signs, side effects, blood assay levels, etc, being recorded via computer chips, there will likely be fewer office visits. There is a downside to that, however. We will lose to some degree the human touch, and that is a true loss when you think about it. Oncology patients need a hand to hold and a hug, especially when given difficult news. And what may happen is that bad news is given face-to-face in the exam room while good news is managed electronically, and that will really set up the patient for fearing office visits.

We will see more and more cancer care happening in an outpatient setting, including the application of more oral drugs that enable the patient to self-administer at home instead of coming to an infusion center. However, this means that we must reiterate again and again the importance of taking the medicines as prescribed and touching base with the patient to help ensure this is happening.

Due to the amazing discoveries that are enabling earlier detection of cancers, better treatments than ever before, and knowing the future holds even more scientific discoveries, we also need to plan on the number of cancer survivors growing. We are currently hovering around 16 million cancer survivors in the United States. This number will escalate given more people will be diagnosed in the future, and more will survive their cancer and its treatment or live in harmony with their advanced cancer being treated as a chronic condition. Keeping patients healthy after treatment to reduce the risk of recurrence or new primary cancers, and helping them cope with lingering and long-term side effects from treatment, many of which are yet to be known, will also be very important. This could mean having a growing number of navigators who focus exclusively on survivorship navigation.

I would love, and I am hopeful, that the time will come when colleges and nursing schools offer courses in navigation. Why not? The field of navigation is a professional option people need to know about. This too could help with better consistency, standards of practice, and career opportunities in the future.

If you are new to the professional field of oncology navigation, welcome to the team! You have the opportunity to be an oncology navigator at an exciting time when your professional organization, AONN+, is taking specific measures to watch your back and speak up on your behalf, whether it be on Capitol Hill, the CoC (of which AONN+ is one of its 58 professional organization members), the Association of Community Cancer Centers, and other venues where navigation is being discussed or should be on the radar. This is a medical field that is growing and will continue to grow in the future.

Stay tuned for updates from AONN+ via the various media avenues we use to keep you informed. Take pride in what you do. Measure what you do. And always remember you are here for your cancer patients.

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Last modified: August 10, 2023

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