Oncology Navigation Role Delineation
Staying in your lane can sometimes be a challenge for the oncology navigator who is working to help a patient with cancer. But as the members of this panel share, knowing and delineating your role is vital to delivering good patient care, to ensuring your overall well-being, and to demonstrating your value to the team and organization at large.
Cancer care is complex and requires the combined efforts of clinical and nonclinical experts to shoulder the workload. But where does the work begin and end for each team member?
During this session, moderator Sharon Gentry, MSN, RN, HON-ONN-CG, AOCN, CBCN, and Editor-in-Chief, Journal of Oncology Navigation & Survivorship® and CONQUER: the journey informed™, explored role delineation in oncology navigation with 4 panelists representing the roles of nurse navigator, patient navigator, social worker, and financial navigator.
Alessandra Alvarez, BSN, BHSA, RN, OPN-CG, Oncology Nurse Navigator for Head and Neck/Endocrine Malignancies, Miami Cancer Institute, opened the conversation with a high-level introduction to patient navigation. “You can make such a difference as a patient navigator,” she said. “You can help track down resources for patients to help with transportation, gaps in coverage, lodging, and so on. You can triage calls so our nurses can spend time seeing patients, and you can make sure patients get to where they need to be for their appointments.”
“The oncology financial navigator is a little more specialized,” said Clara Lambert, CPH, BBA, OPN-CG, Director of Financial Navigation, TailorMed. “We come alongside a patient, help them understand their insurance coverage, help them find ways to optimize their insurance, and find financial assistance for barriers such as copays for drugs or transportation. Essentially, reducing financial toxicity.”
“I think the social worker is slightly different in that we have expertise in diagnosing and treating mental illness, including mental disorders, stress, anxiety, and depression,” Krista Nelson, LCSW, OSW-C, FAOSW, FAPOS, FACCC, Oncology Social Work Manger, Providence Cancer Institute, explained. “We also pay attention to the social determinants of health.”
Representing the nurse navigator, Kristina Rua, MSN, RN, OCN, ONN-CG, Executive Director, Oncology Service Line & Navigation, University of Miami, said, “We are really focused on making sure patients stay on treatment, symptom management, and anything pertaining to the clinical aspect of the cancer journey.” Ms Rua, who recently moved into an administrative role, emphasized that role delineation and ensuring her team members are working within the full scope of their licensure allows her to gather metrics to demonstrate the value of their services.
Role Delineation in Action: A Case Study
Next, Ms Gentry presented the case of “Joe,” a head and neck cancer patient who was nonverbal following treatment and who was experiencing significant barriers to care including illiteracy, social isolation, and limited transportation and financial resources, among others. She invited panelists to discuss how they would work within their role to help Joe get the care he needed.
Ms Rua emphasized the need to educate patients at their level of literacy. “A lot of what is published out there is more complicated than what they can handle. We need to have conversations and ensure patients understand and are able to process how their treatment will affect them.”
“Head and neck cases are very complex and in this particular case, there are many time-consuming administrative things that the patient navigator would be able to assist with,” explained Ms Alvarez. Some of these include assessing insurance coverage, what transportation options exist for the patient and how this can be arranged (keeping in mind that he can’t speak), serving as the liaison between the patient and care team, arranging lodging for treatment, ensuring they can have meals provided when they come for treatment, and more.
“We know there’s a strong connection between poverty and mental health, so my priority would be to wrap our services and ourselves around this person to make sure they have the support they need to get a good outcome,” said Ms Nelson. “I think in this case, I would have wanted to take the time to sit with the patient before treatment to help him understand what he was signing up for and how it would affect his quality of life.”
She goes on to add that the care team needs to ensure a person can read or write before these types of surgeries. If they can’t, they need to work with a speech therapist before treatment so they can learn how to communicate without a voice.
“Cases like this are a team effort,” said Ms Lambert. “Beyond the insurance and treatment barriers, there are many logistical and social determinants of care we need to consider. Because of the volume of work, the team needs to communicate regularly and decide who is going to do what and when. So for example, I’ll handle the financial barriers, the social worker will cover the mental health piece, and the patient navigator will raise any related concerns to us that they identify.”
“I’d like to add that navigators should also include leadership when dealing with challenging cases,” said Ms Alvarez. She explained that leadership may be able to help with things that navigators on the frontline cannot, such as extending a grant or obtaining another voucher for lodging.
Ms Rua added to this sentiment. “We (leadership) can actually help support the growth of the department as well. So it’s important to track those metrics and make sure that each of the roles is staying within their lane, so that at the end of the day, we can justify the productivity of each individual. Role delineation helps us build a business case.”
“But we also need to be flexible,” Ms Nelson noted. “There is so much work to be done, we don’t need to be territorial. Some people may be more efficient at different tasks.”
Parting Words of Wisdom
Closing out the session, Ms Gentry asked the panelists to impart some words of wisdom to the audience on the topic of role delineation.
“It’s important to collaborate, but make sure that there is clear definition as to who is doing what,” said Ms Rua.
Ms Alvarez urged the audience to set boundaries with patients and colleagues and stick to them. “You want to make sure you’re giving the time you need to give, but you don’t want to burn out.”
Any navigator who wants to learn more about role delineation should check out the Oncology Navigation Standards of Professional Practice.
LGBTQI+ Navigating the Healthcare Experience
While healthcare providers want to deliver a safe and welcoming environment for their LGBTQI+ patients, many aren’t sure where to start. This session offered powerful insights into the differences between gender expression, gender identity, sexual orientation, sex-assigned-at-birth, the disparities in healthcare affecting the LGBTQI+ population, and how we can create an inclusive experience for these patients.
In the United States, there are currently 2 gender options listed on birth certificates: male and female. But the fact is that a person’s gender identity doesn’t always match their sex-assigned-at-birth. This can be challenging for healthcare providers who want to provide their patients with optimal care, but who also don’t want to offend or come off as uninformed.
So where should a provider begin?
“Don’t make assumptions based upon someone’s outward appearance,” advised presenter Kelly Haviland, PhD, RN, FNP-BC, TGNB-BC, Advanced Practice Provider Manager, Professional Development and Quality; Lead LGBTQI+ Cancer Care Program, Memorial Sloan Kettering Cancer Center. “Gender expression (the way someone presents themself) may be very different from their gender identity, and gender identity doesn’t necessarily dictate sexual orientation, so we have to ask questions.”
This can be awkward at first, but Dr Haviland suggests starting simply by using your own pronouns when introducing yourself. This opens the door for the patient to disclose their pronouns if they choose and helps them feel more comfortable.
And that’s an important first step when caring for this population.
The Unique Challenges of the LGBTQI+ Patient
According to presenter Al Asante-Facey, PA-C, MBA, Supervisor, Advanced Clinical Providers, Gynecologic Oncology, Northwell Health/Lenox Hill Hospital, it’s important to understand that the LGBTQI+ population has its own drivers of health and healthcare disparities, and these must be taken into consideration when delivering care.
“We have higher rates of HIV infection and most sexually transmitted infections. We have higher rates of intimate partner violence, which goes predominantly unreported and is really underrepresented in the numbers, we have higher rates of substance use and abuse—particularly of tobacco, when you're looking at cancer risk—and also higher rates of housing and food insecurity and lower rates of education,” he said. “And as someone highlighted earlier, this poverty aligns with mental health issues and illness.”
It's a fact supported by a 2024 report from the Centers for Disease Control and Prevention that found over half of transgender youth reported seriously considering suicide.
He goes on to cite a 2022 survey from the Center for American Progress which reports that 20 percent of LGBTQI+ people will also avoid healthcare out of fear of discrimination or disrespect. Moreover, according to the US Trans Survey from 2022, many report being misgendered, called the wrong name, being refused care outright, or being physically or verbally mistreated by a healthcare provider.
“I think when we talk about how our identity impacts healthcare, we can place it into 4 buckets: decreased access to care, cancer risks that look different from those outside the LGBTQI+ population, higher levels of medical mistrust and trauma entering care, and few evidence-based guidelines for care,” explained Mr Asante-Facey.
In the oncology arena, these barriers translate to fewer LGBTQI+ people getting cancer screenings, and that can lead to worse cancer outcomes. “They also have disparities in other diseases that play a role in cancer care,” he added. “If you have more chronic disease, if you report poor overall health, you have less quality of life, and more complications getting to and through your cancer treatment.”
And while these factors alone create a challenging healthcare scenario, we must also take into consideration the lack of knowledge. “There are many historically marginalized communities, and the LGBTQI+ [community members] aren’t alone in that,” said Mr Asante-Facey. “But we have metrics for most, if not all, the others because we have been collecting race, ethnicity, and language data for years. We need to standardize the collection of sexual orientation and gender information so we can actually have a true picture of this population’s (cancer) risks, outcomes, and disparities.”
One area where this knowledge gap is particularly concerning is the impact of gender-affirming care on cancer risks. “Gender-affirming surgeries and gender-affirming hormones are safe and have been used for years, but what we don’t understand is how they may influence risk,” he said. This lack of knowledge also plays into the overall management of a transgender person’s cancer which, depending upon the hormones they may be using, can differ from the cisgender individual.
Asante-Facey’s final point is that there is a lack of culturally specific cancer support for the LGBTQI+ population. “I think for all identities, and specifically for historically marginalized groups, we need to create specific support groups and support materials.”
Steps for LGBTQI+ Inclusion
As providers, there are 3 things we can do to begin to change the healthcare paradigm for the LGBTQI+ community. These include creating a welcoming environment, collecting sexual orientation and gender data identity (SOGI) data, and working to use appropriate language.
“The first thing in creating a welcoming environment is to have clear documentation of someone’s gender and pronouns in their chart,” Asante-Facey said. “Healthcare references legal documents, and only 11 percent of transgender individuals have correct legal documents. There are states where you aren’t allowed to update your documents, and even in those where you can, it’s difficult and takes a lot of money.”
Regardless, he said that by making the effort to collect this information and document it in some way in your electronic medical record, you are demonstrating that you and your practice care.
Then there are bathrooms. And while they’ve become a hot issue, they really don’t need to be. Mr Asante-Facey said that providers can easily put this issue to bed by providing single-stall, gender-neutral bathrooms, or just removing the gender reference entirely from the single-stall bathroom.
He also suggests looking at the physical environment of your office. You can add diversity-affirming signage or your state’s anti-discrimination law to the walls. On business cards, add your pronouns. These are simple things, but they make a difference.
Next, look at your intake paperwork and patient education. Is it gender-neutral? Also, consider creating a simple electronic or paper document that allows you to collect your patients’ SOGI data privately. Include things like their sex-assigned-at-birth, current gender identity, sexual orientation, and preferred pronouns. Having this information in their chart and at hand allows you to speak with them in an affirming way and makes them more comfortable.
Finally, he advised that we pay attention to the way we speak with patients, and offered these tips:
- Remember not to make assumptions. So, for example, instead of asking about a person’s husband or wife, say partner or spouse.
- Ask open-ended questions when obtaining personal information. Ask things like, “are you sexually active,” “what types of people are you active with,” and “what does this look like for you?”
- When you’re not sure about how to properly refer to a part of someone’s body, try mirroring their language. When in doubt, use anatomical terms and avoid euphemisms.
- Be really trauma-informed and focus on harm reduction with this population. Discuss what exams or tests are involved ahead of time to help patients feel more comfortable.
“Challenge yourself to see the assumptions you make, and then challenge yourself to do better,” said Mr Asante-Facey. “It’s not easy, I’ve been trying to do this in my language for years and I’m still not 100 percent. But go easy on yourself and keep trying.”
