Chris Riback: Thank you so much for joining me. I appreciate your time.
Dr. Lola Fayanju: Thank you for having me.
Chris Riback: So before we get into your work, I confess that I watched a video of you and I was so moved in your description on how you seek to help people with breast cancer. You discussed helping them identify what approach or surgery might be best for them. But you also said that you seek to help them recognize that, I quote, “Cancer is just a blip in their otherwise long life.” That felt like such a powerful and positive statement. How do your patients react to that?
Dr. Lola Fayanju: I think for many patients it is intended to, and I think serves effectively as a form of reassurance that the beginning of what feels like a very long journey for most patients. A surgeon, at least for most patients with breast cancer, a cancer surgeon is the first clinician after diagnosis that they meet. And so we are often serving not only the role of news breaker, explaining exactly what kind of cancer they have and whether it’s advanced or not. We’re often a language teacher. We’re explaining the language of breast cancer, which they need not only to understand what we’re hoping to offer them as surgeons, but really understand what the journey of surgery is going to look like and a journey of treatment is going to look like for at least the next year, but for many patients for many years. And then finally, I think that for many patients, until they hear that reassurance, they’re going to absorb essentially nothing else that we tell them in that meeting.
And in particular for patients who are there by themselves, which is more common than one might expect, especially previously during the COVID pandemic height, you really needed to be able to help patients anchor on the moment in which you’re trying to engage them. And recognize, look, even with stage four breast cancer, we are no longer talking about the automatic death sentence. We’re talking about even in stage four, that it’s something that can be chronically managed by my wonderful colleagues in medical oncology. But from my end as a surgeon, I have the good news of, for the most part operating, curing cancer with surgery. And so being able to tell patients that, “Look, at this moment in time, you’re dealing with an operable, curable disease. And let’s focus on that and focus on getting you back to the life you had before this all started.”
Chris Riback: Now, you have not only spoken powerfully about these types of issues and topics and the humanity behind the work that you do and the people that you engage with, but you’ve written very powerfully as well. I would recommend to anyone listening that they read your intimate introspective guiding piece titled ‘Hiding in Plain Sight’ that you published in JAMA. There’s so much to take from that piece. I wanted to ask you about the last line. You wrote, “All too often our patients, their challenges and the ways we could support them are also hiding in plain sight.” And of course, that metaphor of hiding in plain sight refers to your journey and journeys of other doctors, non-white doctors, people of color, and it is a great piece.
And that concept of hiding in plain sight obviously is a very important sentence, all too often our patients, their challenges and the ways we could support them are also hiding in plain sight. How does that explain what you do for a living and why you do it?
Dr. Lola Fayanju: So a little confession, I have a background in literature and history. And so even though I always knew I wanted to be a doctor since I was very young, I always enjoyed the literary arts and enjoyed writing. And I have found that my master’s in comparative literature has probably been one of the greatest assets with regards to being able to conduct research, because research is in fact mainly putting together evidence for the purpose of storytelling. To convince people that there is something they should know, that it might impact the way that they practice or distribute care and lead others. And that’s really something I take to heart. So to that end, one of the things that I really am interested in is storytelling, both from a research perspective but also understanding the stories of my patients. So that also I guess, involves listening to stories.
And when I meet patients, I’m often struck by the extent to which you need to know so much more about them than the biomarkers of their disease, the stage, what their other medical conditions are, to really be able to get them through treatments, even to get them to treatments. And I think as the COVID-19 pandemic really provided a magnifying glass for the ways in which patients can engage with or are unable to fully take advantage of the best aspects of their various social determinants of health, really impacts their ability to receive care. And we know that certain groups are disproportionately affected by unmet social need as a result of the interaction between their demography and the social determinants of health that define their lives. And yet we do a terrible job of collecting this kind of information. We spend so much time again focusing on biomarkers and stage and hypertension and diabetes that we aren’t asking about, do you have any other person you care for at home whose well-being you will prioritize over your own even as you’re going through chemotherapy?
I had a patient who, it wasn’t until the day of surgery that she admitted that she did not have a home, that she and her son who was an adult with developmental delay and frequently inconstant were couch surfing. And so that day I literally just went on Hotwire and got her a hotel, but that is not a fix for the system. But at the very least, I felt that that’s something I ideally would’ve known before her surgery, when I first met her. So one of the main parts of my work is how can we do a better job at centering patients at this moment where honestly, our predisposition is the center of the disease to focus on the cancer, not focus on the person who has the cancer. And so the trial that I’m conducting with the support of the Breast Cancer Research Foundation, is looking how to optimize collecting data on social and behavioral determinants of health for people with breast cancer.
We know that delayed treatment is significantly associated with worse survival with regards to breast cancer. And we also know that Black women and Latino women and people from lower socioeconomic status, women from the LGBTQ community, women from rural areas, all of those individuals are more likely to experience delays in time to treatment. And so we have people who are already in marginalized situations who are all the more likely to suffer from adverse outcomes as a result of things that we might be able to do something about. And wouldn’t we do well to find that information out as soon as possible. So the structure of our trial is that as soon as someone is diagnosed with breast cancer in our health system, or is referred to our health system for scheduling if they’re diagnosed elsewhere, they are immediately connected to our study team who then make sure that they’re enrolled in our electronic patient portal.
And they will be sent a survey to complete, a screen, one of three screens that we’re testing that are previously validated, but we want to see which ones are amenable to completion amongst the diverse group of patients and they’re sent that to the portal. If they don’t complete it to the portal within a specified time before their first visit, we actually then randomize them to either receiving it via a text message or receiving it via a phone call. Recognizing that a lot of our most marginalized patients also may have challenges with technology, or even an aversion towards technology that may not allow them to or encourage them to use the computer. So all of this is to say that we know that there are probably better ways for us to do this, both with regards to the technical means but also the instruments that are being used. Certainly maybe be better than the current standard of care for most places, which is an unstructured approach to try and collect this information if it’s collected at all.
But our hope is that it’ll give us more information on how to do this equitably across all people who present with new diagnoses. That we can then also have an opportunity to intervene upon the things that might prevent them from getting to evaluation and getting a treatment in a timely fashion.
Chris Riback: Well, perhaps none of us should be shocked that as you noted, a person with a master’s in Comp Lit should be interested in understanding the full story and the complete 360 and the total narrative. And not just the disparate or individual facts around an individual. Understanding that I guess on some level we all are our complete story and not just any singular set of circumstances. You talked about these disparities and the results from these social determinants of health. The BCRF write-up on you begins with a shocking statistic, at least shocking to a lay person coming across it. I guess you probably hear this and you’re like, “That’s exactly what we’re talking about.” Differences in treatment delivery and receipt are estimated to account for about 50 percent, 5-0 of the racial disparities seen in breast cancer associated mortality. So the solution, and maybe we can get to, and I know that that’s part of what you’re doing through your study, is going to try to determine, okay, how can we get to some of these solutions? Obviously those are, I assume going to be complicated.
We’ll talk about it. But is the problem this straightforward that in a sense, if not, but for differences in treatment delivery and receipt, if not but for those we could cut down on 50 percent of the racial disparities seen in breast cancer-associated mortality? That just feels like such a massive amount.
Dr. Lola Fayanju: No, it’s extraordinary. If we had a medication or an operation that could improve mortality by even five, 10 percent, we think of that as a huge advance.
Chris Riback: How many Nobel Prizes would you win for that?
Dr. Lola Fayanju: Yes, exactly. No, it is a very shocking idea. So one, we know that as I’ve already mentioned, certain groups are at increased risk for delays in time to treatment and that is associated with their survival decrement. We know that there is underdosing of certain groups of people with regards to systemic therapy, that is often ascribed to they’re having higher rates of certain kind of comorbidities. That is other diseases that may make it hard for them to receive the full doses of prescribed breast cancer treatment. And that relates in part to the fact that, for example, if you already have diabetes and a predisposition to neuropathy and then you receive a chemotherapy agent that also provides neuropathy as a side effect. Well, then you’re probably even less likely to go through with the whole treatment.
At the same time, we know that in many ways you can get ahead of intolerability with early and proactive addressing of patient symptoms. We see that in the geriatric population. We see it in the population of anyone who’s frail, that you have to just check often and address iteratively versus waiting for people to fall off the cliff and then declare that they’re not going to take anything else. So the extent to which we can partner with our patients who may have greater challenges complying or adhering to treatment because of the other medical and social and physical circumstances in their lives, means we could probably do a better job of getting patients through treatment, getting patients to treatment, and then getting them the outcomes that they deserve. Now, that being said, we also know that even amongst patients who do everything, that is the ones who you compare a patient from one group to another group and they’ve had the exact same treatments for what superficially looks like the exact same cancer, there will still often be disparities between for instance Black patients and white patients.
And that points to our need to better understand, again, not only the biological but also social milieu in which cancer happens and in which health frankly happens. And there are many people looking at the extent to which the stressors of being a person living in a marginalized circumstance, one in which you experience discrimination. One in which even if you are well-resourced, you experience people not listening to you, people not taking your symptoms or your concerns seriously, people not prioritizing the same types of health optimization for you that they would for someone else. That is we settle for lower hemoglobin A1C, the marker of diabetic treatment efficacy for people of color relative to white people. There’s evidence that people think that Black people have less pain than white people so they get less medication. All of these are ways in which even if someone is supposed to get the same treatment, how are they going to get it if they’re suffering. And why should they trust you if you haven’t listened to anything they’ve said in the interim, running up to this point of now having a lot of sequelae from their treatment.
So we may not be able to close all the gaps because it’s still at baseline. Some different proportions or some different prevalence rates with regards to certain more aggressive subtypes of breast cancer between groups. But really much of the disparity that we see can be ascribed to the cancers we treat the best. That is our hormone receptor positive,HER2 negative breast cancers, the ones for which patients technically should do really well. And also amongst the cancers that are very aggressive, we know that a lot of the disparity we see is due to unequal receipt of treatment. That is people not getting the same treatments across all groups, in part because of intolerance of certain types of sequelae that might be better managed.
Chris Riback: Who do you see as the audience for the data, and then let’s say the conclusions and the subsequent actions that you end up developing through this study? Are the audiences patients, are they the medical community? Is it society at large? Is it public officials? Is it people who are in healthcare but outside in public health? Who’s the audience?
Dr. Lola Fayanju: Now, I would say the audience are all the people that you’ve mentioned, and that patients need to be prioritized as recipients of their own data. One thing that’s really important with regards to collecting data on social determinants of health is making sure patients know why you’re collecting it and that you’re asking of everyone. No one wants to feel that you’re asking them because you perceive them to be weak or poor or needing your help. If they feel like it’s something that you’re screening everyone for, it means not only are you less likely to alienate the individuals who really need your help, but have good reason not to trust the healthcare system. But you may also engage people who don’t realize they need help and that you might not realize they need help. But because of a, again, equitably distributed screening process, you actually are able to tap into their needs and help them as well.
Freeing the data is something I think a lot of us in research are really committed to. The idea that data should go back to analysis and results of analysis, and research should go back to the individuals who contribute to it. I am very proud of and grateful for the relationships I’ve developed with patient advocates who have been critical to the development of our trial. And who we feel are central to understanding, for instance, the instruments that we implemented into this trial, was the translation of these instruments into text messaging and phone formats, did it make sense? Did it work for them? Do they think it was too onerous? Do they think it would be too hard for patients to go through it? With regards to clinicians, obviously there’s a hope that their finding out this information will allow them to practice better.
But I think what’s exciting about research, especially research that looks at improving receipt of guideline-concordant care, which has really been central to a lot of my funded research, is how to optimize receipt of Guideline-Concordant Care, is that if we can predict who’s at risk for not getting it. And we’re not always right about who’s not going to get it, but if we can predict we can use that information to identify groups of people at risk for not getting it. But also identify institutions that are good at delivering Guideline-Concordant Care and institutions that are less good, that could stand to do better. And we can then learn something about this process versus thinking of disparities as something where often there is this, woe is me, what can we do? Helpless approach where you can’t change where someone lives, you can’t change their racial background, you can’t change their income easily.
But actually, we can look at institutions that work maybe in areas that have more underserved patients and yet people get more Guideline-Concordant Care. As opposed to places where there’s a lot of large S, but certain groups still fall behind what’s happening there. So, I think that when you think about prioritizing prediction of Guideline-Concordant Care receipt and optimizing how people can get it, you can then use that information not only for improving individual care, looking at populations, looking at institutional improvement. And it can even be a way to guide value-based payment in terms of thinking about how to encourage or incentivize institutions to do a better job at lifting all those.
Chris Riback: And reading about it that’s what it feels like, is that these will be results, this is information, this is guidance that could be used in so many different areas and by so many different audiences. And I’m sure that there are then various challenges with quote, “getting through” to each one, even getting through, I’m sure, to the medical community. I would have to imagine that even within the medical community, those of us outside would like to believe that everyone in that community has nothing but patience and patience. The ability to understand and take time and be patient. And getting through to all of these audiences must have various challenges. To close out this portion of our conversation, where are you in the study and what comes out of it? Are there directives or directions that you hope will come out of it? Where are you and what’s next?
Dr. Lola Fayanju: Well, I’m excited to say that we officially launched in March. And I’m incredibly grateful to the support of not only BCRF, but also one of our industry-sponsors Gilead Sciences, as well as our health system, who has embraced this as something that if we get right can be scaled up across disease sites and even beyond cancer. So really an exciting opportunity that has been really furthered by the help and support of multiple individuals and organizations. We’ve already approached, I believe almost 100 women about this and we’ve already had, I think nearly 50 in just two months complete the instruments.
Chris Riback: Wow.
Dr. Lola Fayanju: So really exciting to see how with the help of a wonderful research team as well and the collaboration of the schedulers, various people in our institution, we are seeing how this works, granted we’re in a slightly idealized state where we have clinical research staff, et cetera. The question is what can we learn from this, again, fairly idealized state where we have personnel and resources dedicated to doing this, to translate this into everyday life. One thing we did do is we’re not storing this data in a red cap database that’s offsite. It’s being directly implemented into the Electronic Health Record (EHR) so that patients, providers, regardless of whether they’re aware of the study or not, will see that information, will know that information have a bit of a context about patient’s life. In addition, the goal is that once we have a year’s worth of data, we’re going to be doing qualitative inquiry where we talk not only to the people who participated but those who chose not to.
That’s an opt-out trial. We actually have information and agreement to recontact individuals who maybe initially agreed but decided ultimately not to complete the instruments. To find out, well, what did we get wrong? How could we do better? What would make this an easier process for you? What would make this something you’d want to participate in? These are lessons that can be applied beyond breast cancer and just to medicine in general. And then finally, we can figure out how best to respond to these in personalized ways because I think that right now, unfortunately, many of the social services that help patients who have the most difficulty receiving care are not reimbursed. Patient navigation is just being explored for that as of the end of 2023. And the CMS has also released what are called Z codes, which are basically diagnosis codes that we can use in order to begin to document the ways in which assessing for and managing unmet social need and other kind of issues related to patients, obtaining care, can be documented in the medical record.
But the truth of the matter is there isn’t yet much accountability for what we do with that. So my hope is that, again, we can learn a lot from what we get right as well from what we get wrong. And the information we get, at least provide some durable impact on the care trajectory of the patients who participated. And that this is something that can ultimately be scaled up and translated into other arenas beyond breast cancer and even beyond oncology, which I think would be a real boom to our health system nationally.
Chris Riback: I know you’ve discussed it just a little bit already, but how would you characterize the role that BCRF has played or is playing in your research?
Dr. Lola Fayanju: Well, one of the best things about being a BCRF investigator is obviously the community of individuals who are also BCRF investigators. And I think also that the generosity of BCRF gives you the courage to ask questions that might be a little bit hard to secure even federal funding or other kind additional sources of funding for. It allows us to be a little bit creative, a little bit daring, but also to address things that while they may not be the shiniest question, asking people what their lives are like may not sound like a classic kind of research question. BCRF allows us, again, to center the patient in terms of thinking about how to get to the heart of actually delivering care through research and doing it in an evidence-based way, not just kind of following our gut. So I’m very grateful to the BCRF community.
I’m grateful to the people I’ve met to the BCRF community who have given me ideas, who connected me with other people. As we think about this trial, as we think about what we’re getting right, getting wrong, I think our collective wisdom is enhanced as the investigators by the context I’ve had through BCRF, in addition to the financial support they’re providing for our team.
Chris Riback: And I’m thinking how to phrase this, and you are clearly such a combination of right and left brain. You’re applying everything it seems in what you do. How did science win out for you? And maybe not win out, I’m struggling with even saying that because you’re obviously applying both sides and everything that you do. And for all I know you’re working on the next great novel in your, so-called off time. So I don’t want to be presumptuous that science has won, but how did science get you at least this far?
Dr. Lola Fayanju: Well, I absolutely loved my master’s program. I absolutely loved writing, but I wanted my stories to translate the change. And yes, literature can do that. And I have been changed by some amazing work of the literature actually on an individual level. But in terms of the impact you can make as a scientist, not only changing the trajectory of individual people’s care, but whole populations when there is either clinical change that you implement or policy level change that you implement, really is incomparable. My kids joke that sometimes they think by 10:00 AM, mommy’s already cured somebody of cancer. And because we get up early as surgeons, our first cases typically start at 7:30 in the morning. And what’s exciting for me is yes, I get to do as a surgeon. But then as a surgeon scientist, as a health services researcher, I also get to think about ways in which to cure everybody. And that’s really, really exciting.
And it still allows me to use storytelling because storytelling is really one of the best things about doing research. It’s putting together all the evidence you acquire, all the code you’ve run, all the analyses, and then finally weaving them together in a story people want to read and respond to. And that’s what I really try to remind my mentees. That’s the other thing that really brought me to science is growing the next generation, finding the people who are way smarter than I am who are going to take what we do further and further. That is incredibly satisfying and one of the best parts of my job as well. So yes, I think science won out because it didn’t allow me to have to give up too much. I can still tell stories, but I can also do a heck of a lot of good.
Chris Riback: Well, it forced you to give up sleep, but is there a favorite book of yours that you might recommend that I read?
Dr. Lola Fayanju: Oh gosh, let’s see. Well recently, I would say over the past five to 10 years, I rediscovered an author who I first read when I was 12 years old, Ursula Le Guin. The famed science fiction writer who when I was I think 12 or 13 in nerd camp, I read “The Ones Who Walk Away from Omelas”, which is an exceptional short story. But I don’t want to say too much about because I think people really need to read it. But let’s just say it asks us think about what’s at stake when we opt to live in a good society. And the book that I read by her most recently would be “The Left Hand of Darkness”, as well as “The Dispossessed”, which are both books about the idea that Earth is just one of several planets populated by human-like creatures. And the ways in which our society developed in parallel, but slightly differently due to the environmental constraints in each of those worlds. So in particular, The Left Hand of Darkness, because it’s a world of such extreme environmental austerity, there is no fixed gender.
And she wrote that book in order to, I think, challenge people’s ideas of what kind of roles would you like for gender if you didn’t know at any given month what gender you would be? So I love Ursula Le Guin. She was also, I believe, an anthropologist and a brilliant person who combined literature and science to really make us think. And yes, I would say that’s probably one of my favorite books recently. Those two, “The Left Hand of Darkness” and “The Dispossessed”. So long answer.
Chris Riback: Great answer. Thank you for the tip. And no surprise it feels on brand that you would be drawn to someone who combines literature and science, to someone who she also seems to have crossed into both worlds. Thank you, I will take a look. I’ve never read anything by Ursula and I look forward to it. Thank you for that. Thank you for the work that you do with patients every day.
Dr. Lola Fayanju: It’s my privilege and my pleasure. Thank you.
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