Key takeaways
- Communication is central to patient experience, especially when treatment or insurance delays create uncertainty.
- Supportive care should address the whole patient, including palliative care, nutrition, psychosocial support, and financial needs.
- Patients should help shape the services designed for them, and their feedback should directly inform improvement.
- Navigation can remove practical barriers such as transportation, referrals, records, and trial coordination.
- Strong community oncology depends on trust, connection, and making patients feel seen throughout the cancer journey.
At the Community Oncology Global Congress (COGC 2026), organized by OncoDaily, Anjali Sibley, Clinical Associate Professor of Medicine at Stanford School of Medicine and Director of the Stanford Medicine Cancer Center in Emeryville, sat down with Angelina Lorello, Advocacy and Patient Experience Coordinator at New York Cancer and Blood Specialists, for a conversation centered on a part of cancer care that can be difficult to capture in a treatment plan: what patients actually experience while trying to move through the system.
Their discussion moved from insurance delays and communication breakdowns to supportive care, patient navigation, community resources, clinical trials, and advocacy. What connected all of these topics was a simple idea: excellent cancer care depends not only on choosing the right therapy, but on whether patients can understand the plan, access the services around it, and feel that someone is helping them navigate what comes next.
When Treatment Is Delayed, Communication Matters Even More
For Lorello, one of the clearest frustrations patients are bringing forward today is the uncertainty created by insurance approvals and treatment delays.
“Unfortunately, insurance companies can become a roadblock to patients getting access to drugs faster.
We have patients who call and say, ‘I’m very nervous about starting my treatment. I haven’t heard anything back.’
Sometimes we are waiting for a peer-to-peer because the insurance company denied the treatment, or there has been a delay in getting the drug.
My role in advocacy is to keep the communication going.
We call the patient and say, ‘We just heard back from the insurance company. We’re still waiting.’
What feels like a day for us can feel like a whole month for the patient.”
Sibley returned repeatedly to the same point: as cancer care becomes more complex and more digital, communication becomes more important rather than less.
The problem is not simply whether information exists. It is whether the patient understands what is happening, who is responsible, and what they should expect next.
That need extends well beyond treatment authorization.
Supportive Care Has to Be Part of the Cancer Journey
Both speakers emphasized that patients may need far more than chemotherapy, radiation, or surgery.
At New York Cancer and Blood Specialists, Lorello described a model in which social work, nutrition, palliative care, outside psychological support, and financial assistance are treated as part of the broader cancer experience rather than separate add-ons.
“We have a lot of different resources to help our patients.
We have social work. We use outside psychological services because we wanted patients to have access beyond the hours of our own clinic.
We also have palliative care, and our palliative care providers can work with patients on things such as pain, anxiety, and other symptoms outside of the regular oncology visit.
Our patients really value that.
We want to make sure that patients experience a good quality of care throughout their cancer journey.”
Financial distress can be just as disruptive.
Lorello pointed to the New York Cancer Foundation, which provides assistance for patients facing financial burdens related to cancer care, including help with transportation and other practical needs.
“When a patient is diagnosed with cancer, they also get hit with the financial aspect.
We have helped patients with things like mortgage payments and other financial burdens.
When patients know that the organization treating them is also trying to support them through those problems, you are building trust.
You are telling them: we are here for you beyond the treatment itself.”
Sibley connected that approach to the broader evidence supporting early supportive and palliative care.
“The purpose of supportive care is to prevent deterioration and help people live as well as they can.
When supportive and palliative care are introduced early, you are also building the relationship before the patient reaches a point where difficult end-of-life decisions may need to be discussed.
Those conversations are still difficult, but they become easier when trust already exists.”
Ask Patients What They Actually Need
One of the strongest themes of the conversation was that patient-centered care cannot be designed entirely by clinicians or administrators.
Sibley described surveying patients in her own community practice in the Oakland and Emeryville area to understand what supportive services they wanted, what would make them participate, and what barriers kept them away.
“We asked people very directly: What do you need? What would it take for you to show up for these services? What are the barriers? What do you simply not like?
One theme comes up very clearly: people do not want to be patronized.
They do not want sympathy.
They want to be empowered around what they can do.”
At New York Cancer and Blood Specialists, Lorello described a similar feedback structure through the Patient-Family Advisory Council, or PFAC.
The council meets monthly and is open to both patients and family members, with virtual participation available for those who cannot attend in person.
“I ask them, ‘What do you want to see more of?’
Sometimes the feedback is positive, and sometimes it is negative.
But negative feedback is also what helps an organization grow.
I may not personally have the power to change everything, but that is where the advocacy work comes in. I can bring that feedback to senior leadership and say, ‘This is what I’m hearing from patients.’
Then it becomes a discussion about where we can improve.”
That feedback can cover everything from billing and call centers to educational content and patient events.
Lorello also described an annual celebration that brings clinicians, staff, patients, and families together outside the clinical environment.
“Everybody gets to let their hair down.
The providers come with their families, patients come with their families, there are games and food, and for one day people can step away from some of the seriousness they are dealing with.
It builds a different kind of connection.”
When Navigation Becomes Part of Treatment
The conversation then moved to clinical trials and the practical barriers that can keep patients from reaching them.
For some patients, the barrier is not eligibility. It is transportation.
“For patients who are homebound or who have difficulty getting to some of our locations, our team can arrange transportation.
An Uber can pick up the patient – and sometimes the family member as well – bring them to the appointment, and take them home.
That takes away one of those questions families are otherwise left trying to solve themselves: ‘How am I going to get my mother out of the house? How am I going to get her there?’”
Navigation also means ensuring that patients are not responsible for coordinating every specialist, scan, laboratory test, and follow-up appointment themselves.
Lorello described a model in which members of the provider’s team help move the patient through referrals and follow-up, while imaging, laboratory testing, and other services are kept in-house when possible.
“The patient should not have to say, ‘Now I need to figure out how my records get transferred to another office.’
We try to coordinate that for them.
That is one of the advantages of community oncology when those services are connected – everything can stay closer to home, and somebody is helping you move through it.”
For newly diagnosed patients, Lorello described giving every patient information about the resources available to them from the beginning – even if they do not need every service immediately.
“Sometimes a patient hears the word cancer and completely shuts down.
That is why the information is there from the beginning.
Maybe they do not need nutrition today. Maybe they do not need palliative care today.
But things can change very quickly, and we want them to know those services are there.
It is always a phone call away.
That is what it is about – walking through the journey together.”
Advocacy Begins With Making Patients Feel Seen
Near the end of the conversation, Sibley asked what keeps patients connected to a community oncology practice when major academic cancer centers may be only a short distance away.
Lorello’s answer came back to where the conversation had started.
“Human to human, I think it comes back to communication and comfort.
People notice when they walk into a place and somebody says, ‘Hi, how are you today?’
They notice when they feel like a number.
No organization is perfect. Things can slip through the cracks.
But it is how you manage those moments, how you communicate, and whether the patient feels comfortable enough to trust you.”
That same principle applies as oncology teams grow.
With more care increasingly shared among oncologists, nurse practitioners, physician assistants, pharmacists, nurses, navigators, and other professionals, Lorello stressed the importance of introducing the team clearly so patients understand who is caring for them and why.
Sibley summarized it simply:
“Cancer is a team sport.
We have more patients and broader teams than we did before.
Introducing that whole team early means that nobody feels surprised or slighted when another member of the care team walks into the room.”
For Lorello, patient advocacy also extends beyond the clinic.
Through her work with the Community Oncology Alliance, she has participated in advocacy meetings in Washington, sharing patient and caregiver experiences with policymakers and encouraging others to tell their own stories.
“Everybody has a story to tell – whether you are a provider, a caregiver, the daughter of somebody who had cancer, or somebody currently fighting cancer.
Everybody’s story is just as important.
Going to the Hill can be intimidating, but you go in and tell that story.
That is how these issues get put on somebody’s radar.”
The conversation ended where much of it had begun: with the people behind the systems.
“Remember your why. That is the most important takeaway.” – Angelina Lorello
And Sibley closed with a reminder that meaningful improvement does not have to be perfect to matter:
“We do what we can do. Every little bit makes a dent. Every little bit helps.” – Anjali Sibley
Written by Eliz Baloyan, MD, Features Writer and Editor at OncoDaily and CancerWorld
