Empowering Providers to Empower Patients in Breast Cancer Care

Dr. Nicole Rochester:

Hello, and welcome to the Patient Empowerment Network’s EPEP podcast. In this episode, we’re focusing on breast cancer care. An area where innovation continues to accelerate, yet deep inequities persist in who benefits from these advances. For many patients, especially those from historically marginalized communities, trust remains the critical factor that determines whether they seek screening, start treatment, or feel heard throughout their care journey. Joining me today is Dr. Demetria Smith-Graziani from Emory School of Medicine. Dr. Smith-Graziani, thank you so much for being here. 

Dr. Demetria Smith-Graziani:

Thank you so much for having me, it’s a pleasure to be here. 

Dr. Nicole Rochester:

Well, before we get into the conversation about breast cancer, I’d love to have you start by sharing what is bringing you joy today?

Dr. Demetria Smith-Graziani:  

You know, I think one of the things that brings me a lot of joy is time with my family. I think it’s rejuvenating, recharging, and  just kind of reminds me why I’m doing all of this. 

Dr. Nicole Rochester:

Awesome, and we need reminders, you know, because this work is very challenging, so thank you for sharing that. 

Dr. Nicole Rochester:

So, Dr. Graziani, from your research, what does it look like when a care system truly builds and sustains trust in breast cancer delivery, beyond one-off outreach approaches?

Dr. Demetria Smith-Graziani:

I think to really look at trust on a systems level, it’s difficult, because a healthcare system, by definition, is part of this, you know, larger system of American healthcare, which has been so untrustworthy in the past. Right? And so I think it is a focus on the people within a system, because institutions, I think, inherently do not prioritize the needs of individuals, and so it is the focus of individuals within that system. When patients know that there are people within a specific healthcare system that they can go to with their questions and concerns.

When a healthcare system has a track record of regularly partnering with organizations within the community and laypeople and leaders within the community. And not just staying within the ivory tower. When you are really getting the word of mouth, right? That patients are coming in because someone that they know personally has recommended that they come to this healthcare system because of their experience. That, I think, really shows that a healthcare system is doing its job. 

Dr. Nicole Rochester:

Absolutely. That’s a really good point, this idea of recommending, because just like we recommend restaurants and vacation spots, when we have a good experience, we will recommend healthcare systems as well. Let’s talk about the community. What are examples of care models that reflect community voices and lived experience in breast cancer care? And how can providers replicate them in practice? 

Dr. Demetria Smith-Graziani:

You know, I think in the primary care space, there’s a lot being done in creating a patient-centered medical home, and I think we need to really apply that to subspecialty care as well. And I think that starts with thinking about what we’re focusing on. In the breast cancer space, in oncology in general, there has been a shift in when we are studying new drugs, new treatments, new innovations, that we are not just collecting the quantitative data of how long did someone live? 

How many more months have we extended an individual’s life, right? What are those factors, but also what we call patient-reported outcomes, or PROs. So, this treatment, this new treatment may have extended a median progression-free survival by a number of months, but what was the patient’s experience with that treatment? What were their side effects compared to the current standard of care? And were those side effects tolerable for the patient. 

You see this also with a shift, in now spending more energy in the survivorship space of cancer care. It used to sort of be enough from a health system standpoint that we were helping people live longer, and now we’re stopping to think, well, how are people living with that extra time? Are they living well? Right? Are they developing some long-term complications related to the treatment they received? In the breast cancer space, that’s coming in the form of sometimes side effects from chemotherapy, like neuropathy, some of those that are lasting long-term, and how do we help people deal with that, or prevent that from happening in the first place?

A lot of my patients who have hormone receptor-positive breast cancer are on anti-estrogen therapies, and those come with a number of side effects, menopause-like symptoms, hot flashes, joint pains, vaginal dryness, mood changes. And being able to think about how can we best support patients to minimize those side effects, because we are recommending that our patients stay on those treatments for anywhere from 5 to 10 years. So, it’s really centering patients and asking them how they are doing, getting navigation services to help them move along, and really thinking about the ways that we can improve their overall quality of life. 

Dr. Nicole Rochester:

Thank you so much for sharing that, Dr. Smith-Graziani. As we talk about community, and as you share about this innovative treatment, we know that these innovations don’t always reach certain populations. And we know that there’s a lot of innovation in breast cancer, from CDK4-6 inhibitors, to next-generation targeted therapies for HER2 low and hormone receptor positive disease. But sometimes these advances can actually widen gaps if they aren’t implemented equitably. From your perspective, what steps can providers and health systems take to ensure that these innovations reach all patients, especially those from historically underrepresented communities, and those who may not be represented in the clinical trials?

Dr. Demetria Smith-Graziani:

Great question. So, it comes to, one, making sure that all providers in all locations are appropriately educated about the newest innovations in cancer care. So just knowing that a patient is eligible for a particular treatment, or a particular trial is helpful. And also making sure that the knowledge and the education is not hoarded among healthcare professionals, but also patients know that they can be empowered to ask questions about their own care. That it is okay for a patient to ask about clinical trials they may be eligible for, or why a particular treatment is being recommended. That they know that there’s a website, clinicaltrials.gov, where they can search for available clinical trials across the country that are registered with the FDA that may be a fit for them and that we have that conversation so that they can ask about their care. 

And it’s also really important that we are aggressive with asking patients about participation in trials and educating them about the trials. I think it’s important on a systems level that targets are being set, right? That we are making sure that we have adequate representation in trials, and that we are setting goals about who should be in those trials. And really, we want to make sure that the clinical trial population reflects the patient population. In the space of breast cancer, we know that triple-negative breast cancer is more common among Black women or patients of African ancestry. 

That means that we need to make sure that when we are opening trials, triple-negative breast cancer, that we are having appropriate representation from Black patients. In the United States, non-Hispanic Black people make up about 12% of the U.S. population. We don’t see that representation nationally in clinical trials. Sometimes maybe 4%. Now, at my institution in the breast cancer space, about a third of our patients who go on to clinical trials are non-Hispanic Black patients, but, you think that compared to the national average, that’s pretty good, but I am in Atlanta, a city that has about a 46% non-Hispanic Black population, right? And so, we have to set targets specific to the communities that we’re in and make sure that we are not just sort of setting the lowest bar possible. 

Dr. Nicole Rochester:

Thank you for pointing out that specific fact, making sure that it represents our communities, and not settling, so to speak. I appreciate that. As we wrap up, Dr. Smith-Graziani, if you were to ask healthcare providers treating breast cancer families to implement one concrete change this year to strengthen trust and engagement in breast cancer care, what would it be?

Dr. Demetria Smith-Graziani:

I think listening to patients is going to be the biggest thing to strengthen trust. One of the biggest concerns that I hear from patients who may come for a second opinion, I am often giving the same recommendations that they may have heard elsewhere, right? Because we’re following this guideline concordant care. But it is sometimes the way in which I’ve communicated that information, my willingness to take the time to listen to their specific concerns about those recommendations. And to also assess for understanding. I also just often in my encounters with patients, I admit that this is a very overwhelming visit. 

That there’s so much information, and that it is nearly impossible to remember everything that I’m going to be saying. And then to be able to understand all of that. And so I really assure patients, I reassure them that they can ask questions now, but they can continue to ask questions later on, as they continue to process that information, that is what a patient portal is for, right?  

As new questions come up, you can ask more of those questions. And then at future visits, I’m going to continue repeating that important information, and assessing for understanding, and you’re going to continue asking me. So I really, you know, one of the mantras that I use for patients is I make recommendations, you make decisions. And so, I really want patients to remember that, and I think it’s really helpful when providers keep that in mind, that you are coming into it with your particular knowledge in this area, and the patient is coming into it with the knowledge of their body and their personal life. And their particular set of values. And we’re not helping them make the decision that we would make for ourselves, we’re helping them be informed to make the right decision that aligns with their personal values. 

Dr. Nicole Rochester:

Wow. I make recommendations, you make decisions. What a perfect way to close this conversation. Dr. Smith-Graziani, thank you. So much for sharing your thoughts and your expertise today. As innovation in breast cancer care continues to move forward, today’s conversation is a powerful reminder that progress must reach every patient, not just those with access to specialized centers or resources. For the providers listening, I hope this discussion inspires you to look closely at your own systems, your own workflows and your patient interactions, and to ask, how can Imake trust a measurable part of the care I deliver?

Thank you to everyone tuning in to this episode of the Empowering Providers to Empower Patients, EPEP podcast, brought to you by the Patient Empowerment Network. I’m Dr. Nicole Rochester, have an amazing day.