[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
We need to talk about Black breast health. Black women are about 40% more likely to die of breast cancer than white women, diagnosed at younger ages, at later stages and with more aggressive breast cancers leading to poorer outcomes. This monthly podcast series, Stand for H.E.R. – Uniting to Create a Health Equity Revolution, opens a national dialogue that engages community members and organizations, health care providers, research scientists, and opinion and policy leaders to discuss recommendations and actionable strategies to advance breast health equity in the Black community.
Susan G. Komen’s approach to creating a health equity revolution through Stand for H.E.R. includes tailored interventions such as workforce development to increase diversity and improve cultural sensitivity of health care workers. We are thrilled to welcome Dr. Tracy Battaglia from Boston University and Kyandra Fox from Komen’s Patient Navigation training team to discuss this important topic. Welcome to the show, Tracy and Kyandra!
[00:01:18] Dr. Tracy Battaglia: Good morning. Great to be here.
[00:01:20] Kyandra Fox: Good morning. It’s great to be here as well.
[00:01:23] Adam Walker: Right. So I’m excited to talk to you both. This is such an important topic and I really like the juxtaposition of this conversation. So, Tracy, you have more than 20 years of experience designing and implementing community engaged patient navigation programs to address health inequities across the continuum of cancer care. Can you tell us more about the, this work and why these programs are so important?
[00:01:46] Dr. Tracy Battaglia: Absolutely. Thank you. So I practice at Boston Medical Center, which is the largest safety net medical center in New England. And I’ve been there for over 20 years. And when I started out my career, we used to say that breast cancer’s not always the worst problem our patients are facing.
And we have learned a lot of things over the past 20 years. And I think what we meant when we said that, really around understanding the structural and social barriers to accessing quality care. We’ve sort of really matured in our understanding of healthcare inequities and what patient navigation programs were designed to do were to understand at the individual level what barriers our patients had in accessing quality care.
Practice in Boston in a city that is an embarrassment of riches of academic medical institutions. Yet our disparities in health outcomes, including breast cancer outcomes for black and white women is still enlarging. That’s a big problem. And so patient navigation programs were designed to address that issue.
Now, there’s no way a patient navigator in and of themselves can fix the broken healthcare system that we have, but it’s a start, and I think what patient navigation has done and also matured over the years is to really. Start to understand the process or journey that our patients take from the time that they have a suspicion for cancer to their diagnosis and through their treatment.
And you know the intention of navigation is really to get patients through in a timely way. Time is of the essence. We know if we get patients into cancer care in a timely way, they have better outcomes and navigators work with patients to help them do that.
[00:03:45] Adam Walker: You know, I’ve never thought about what you said.
You said breast cancer may not be the worst per worst thing that person’s facing. Like that is just, wow, that’s a profound statement and such an insightful thing to say from a medical professional at such a, you know, prestigious. Location. So thank you for that. I really appreciate that. So Kyandra Komen is hired and trained six culturally competent Komen patient navigators on staff to serve patients in metropolitan areas with some of the greatest inequities.
Can you tell us more about your role in the training program at Komen and how you work with internal and external patient?
[00:04:24] Kyandra Fox: Of course. Thank you. So what I do here at Komen is help oversee our patient navigation training program. So there’s really two sides. Komen has a patient care center, and within that patient care center we have the patient navigation services, which is where our internal Na Patient navigators live, and we also have the training program.
The training program really has a two-pronged approach, and I really love, so I want to reiterate with both Dr. Battaglia and you said that breast cancer isn’t always the worst problem that patients are facing, and we realize that. So our one of our main goals within the training program is to produce content.
Helps navigators through a health equity lens. So it really has the two prong approach of one, diversifying the workforce because we found that patients are more receptive to receive information from individuals who reflect the communities that they are a part of. And two, to provide navigators with equitable tools, resources, and strategies so that they can have.
Everything that they need to efficiently navigate a diverse patient pool.
[00:05:45] Adam Walker: Oh, that’s fantastic. I love that. So Tracy, I think you started to answer this question already, but I’m hoping you’ll expound on it just a little bit. But from your experience, can you discuss why it’s so important to increase diversity in the healthcare workforce?
[00:05:59] Dr. Tracy Battaglia: Yeah, happy to. I have to share my personal experience, which I think will highlight of my. I am fortunate to be a two time cancer survivor. I my first diagnosis was when I was in medical school and my second diagnosis was about four years ago. After dedicating my career to breast cancer inequities, I was diagnosed with breast cancer.
And both of those experiences, I recognize that I am a white woman of privilege and my care experience was extreme. Different than the patients that I serve. And so while I feel like we’ve done a lot of work to address inequities, we still have a long way to go. And so when I say my experience is different, you know, my experience is different because when I walk into the hospital and when I interact with my providers, they’re very much like me and so I’m comfortable.
That’s not necessarily the case for other patients. People of. People who don’t speak English from all sort of, you know, different cultures. And, you know, care requires trust. And trust starts with relationships. And if you’re starting out with in, in equal relationships with your healthcare team, it’s really hard to trust and access.
And so from that perspective, I think at the root cause of our healthcare inequities, it’s really about trust. And as much as I, you know, can say that I have experience and have been trained to be culturally aware and culturally sensitive, I’m not from the community or from the cultures of most of the patients that I serve.
So, you know, my team in taking care of the patients that we take care of at Boston Medical Center is extremely. I think it makes us a standout institution in the city because if you walk in the doors and you’re from a different culture and you speak a different language, you will see signage that feels comfortable and you will see faces that look like yours.
And so I think that is a critical component of it. Our patient navigation programs have allowed us to increase and diversify our workforce because our patient navigation program historically and to this day has been about finding. Culturally congruent community members and bringing them into the healthcare team to support the patients.
[00:08:34] Adam Walker: That’s fantastic. That really well said and very thoughtfully, but I really appreciate that perspective. Keandre, one of Komen’s major areas of focus is on increasing diversity specifically for genetic counselors. So can you just explain like what a genetic counselor is and how one would work with a patient.
[00:08:55] Kyandra Fox: So, yeah, of course. I want to preface this with the fact that Komen is doing a lot of work on genetic counseling and testing and the inequities, researching the inequities that fall within that. What. The role that I have in that is for our training program that we talked about a little bit earlier.
We’re creating a course on navigating patients through genetic counseling and testing. So how can a navigator help a patient through that process? So what a genetic, to answer your question, what a genetic counselor does is provides patient with information about how genetic conditions might affect them or their family.
So the genetic counselor, So speak to the patient about their individual and family health history. Explain the benefits and limitations of genetic testing. Explain what kind of genetic panels are available and what happens if a genetic mutation is discovered. Now, one of the things that we focus on, Within the course that we’re creating right now is, like I mentioned, the inequities that might fall within that.
So as Dr. Battaglia mentioned earlier one of the things we highlight is, you know, that there’s not a large provider representation for historically marginalized populations. So what if a patient doesn’t feel comfortable? Right? What is the navigator’s role in. What if a patient barrier is exacerbated by the social determinants of health that they’re experiencing, how can a navigator help with that?
So we really focus within the course on navigator strategies how they can educate patients, how they can empower patients and just really what that process looks
[00:10:52] Adam Walker: like. I love that. I love. All right. So Tracy again, you sort of, you part, you partially alluded to this already, but I’m going to hope we can we can double click on it and go a little deeper here. So, from your experience in your career, why is it so important to have culturally sensitive and diverse genetic counselors?
[00:11:11] Dr. Tracy Battaglia: Well, I’ll start by saying that I could not do my job without genetic counselors. So, I in our breast practice, we focus a lot of our attention. Identifying and understanding the risks of the patients that come into our practice so that we can appropriately create a care plan for them that is consistent with their personal risk for developing cancer.
Genetic counselors are critical at the time of diagnosis, especially for young women of color because it will alter your treatment trajectory. So having access to genetic counselors at the time of a diagnosis can impact the care that you get. And so we need to make sure that they’re available at that time.
But even if you step back a few steps and you think about screening and risk reduction and early diagnosis genetic counseling is important there because it allows us to offer. Risk reduction strategies to reduce your chances of getting cancer altogether and helping you find a diagnosis early, which is life saving.
So, culturally, you know, diverse genetic counselors are critical because it’s a really complex issue. You know, counseling and talking about genetic risk and what it means. How it impacts me and my family is a really complicated concept that I have trouble understanding. And so when we talk to our patients about it, we have to have people who can break it down and help people understand the impact it has on their lives.
And you know, when you’re crossing language divides, that gets even harder at our institution, you know, we have, I mean, at any given time when I have a session of patients, I would say 50% of my patients don’t speak English. And it’s not just, you know, the top languages of Spanish and Haitian Creole, but it’s, you know, languages I can’t even pronounce because they’re so rare.
And so, you we have to be able to address those things through interpreters sometimes. And so, you know, culturally aware and trained genetic counselors are critical so that our patients will utilize them. You know, some, sometimes we refer them and they never make it there because they don’t understand it. They’re intimidated by it. And so, they’re critical members of our care teams.
[00:13:46] Adam Walker: I mean, it seems like genetic counseling would be such a, such an important role to take such something so complex and make it digestible, consumable, you know, to a non-medical professional.
[00:13:57] Dr. Tracy Battaglia: Can I just say, and this is not my area of expertise, but I will say that, you know, a real limitation that we struggle with at our institution as a safety net institution is genetic counselors are not reimbursable. Like they can’t bill for their services in the traditional way, a healthcare provider bills. And so, you know, it’s often on the operating budgets of hospitals or other ways of sort of raising funds to be able to provide this service.
We have a long way to go, you know, in that. It’s not dissimilar to the patient navigation models of, you know, sustainability and sort of funding for those critical roles, which I, we can’t gloss over because, you know, we’re doing this work. We know it’s critical, we know it improves outcomes, but we have a lot of work to do to make sure it’s sustainable.
And so plug for the National Navigation round table, the national navigation round table is the national consortium of members from across, you know, all agencies. That are sort of working towards this common goal of sustaining oncology navigation models.
[00:15:05] Adam Walker: That’s great. Thank you for sharing that. I really appreciate it. All right. So Keandre Komen has trained more than 70 black individuals through the Navigation Nation training program. Can you tell us more about the program and how it’s helping to increase healthcare workforce? D.
[00:15:22] Kyandra Fox: Sure. So a little bit more about the patient navigation training program.
It was launched in May, 2021, so it’s about a year and a half old. And as I mentioned earlier, it really has the two prong approach of one diversifying the workforce, and two, providing navigators with skills, strategies, and resources. And we do. In various ways. And so, one of the initial ways we do that is we have an online training portal that we finally call our navigation nation portal.
And we call our, our trainees or our navigators that partake in the program, our community, our navigation nation community. and that’s intentional because we really want to foster an environment of communities. So, that the trainees within the program feel comfortable to share best practices, to be vulnerable, to share what they’re struggling with to share barriers.
But within our online portal we have courses that they can take. And so originally the program spans about 10 weeks. And we have a core curriculum that is adapted from George Washington University. And then we also have courses that we create in-house that are created through a health equity lens.
So one of the first in-house courses we launched is navigating black patients through racism and bias in healthcare. So within that, we talk about as I mentioned earlier, how sometimes barriers are exacerbated within specific communities by additional factors that affect them, such as social determinants of health, such as racism, such as a lack of cultural congruence.
Right. And so, right now, as I also mentioned earlier, we’re we. And the process of writing and producing a course on navigating patients through genetic counseling and testing, which will also focus on some of those inequities as well. Yeah. So, and then additionally, so we have the online part, but of course we ask for feedback.
So, after our pilot we sent a survey out and we asked for feedback. And one of the things that was mentioned was peer, more peer to peer engagement and more events. So, In September, we launched our inaugural Navigation Nation Summit, and it was called Navigating of Have to Health Equity. And we had a lot of experts in the field come and talk about some of these hard topics such as how do you bridge the gap?
What are some health equity and space solutions for the navigator? How do I build a roadmap to success for all of my patients? What does that look like? We also have panel discussions. So we’ve had panel discussions on how to navigate underserved communities, breast cancer 101 navigation, genetic counseling and testing as well.
And we have virtual office hours where we just come and talk and network share ideas, play play games that are related to the content within our courses. And so it’s really a way, as I mentioned earlier, to just foster that community so everyone feels comfortable enough so we can have these tough conversations about addressing these barriers to.
[00:19:04] Adam Walker: You know, I appreciate you going to that level of detail because it made me realize how incredibly comprehensive this training is and it, which just speaks to the gravity. Of how far we have to go in this area. Right. And so I really appreciate you, you just sharing all those details. That was really helpful.
So Tracy, your approach to addressing health inequities focuses largely on engaging communities as partners in their research process. How can listeners get involved in helping address these inequities?
[00:19:37] Dr. Tracy Battaglia: Well, I want to just pick up on what Kyandra just sort of described. The process that you went through in creating your curriculum is you engaged the community in that process.
You, you explained beautifully how you asked for feedback and you adapted your program in response to that feedback, and that’s exactly what community engaged research is about. So, you know, if you’re asking what is the sort of the call to action here is, there are lots and lots of ways for the community to get involved in research.
Not nec, not of course they could participate as research subjects, but that’s not what I mean. I mean that there’s opportunities and expectations from funders now from the National Institutes of Health down to every foundation and organization, including the Komen Foundation, who I think Susan G. Komen had led the way in sort of, you know, having patient advocates as part of your team in order to be eligible for funding.
So, so researchers are expected to be partnering with the community and not one offs. They’re expected to show true authentic relationships with community partners, whether that be a survivor or a member of a, you know, the leader of a community based organization that represents a group that is interested in improving the health of their community.
You so the ways to get involved. At every level you can look online. At funding agencies, they are looking for community volunteers to help them review grants, sit on focus groups, sit in on community advisory boards, look at your local hospital, ask your healthcare providers. I think there’s lots of ways to get involved.
There’s a funding agency called PCORI, the Patient Centered Outcomes Research Institute. They are designed to get patient voice in research and there’s opportunities to sign up and get involved that way. So really the sky’s the limit for community members to start to drive the research.
[00:21:39] Adam Walker: That’s fantastic. And Kyandra, similar question to you. How can listeners connect to Komen’s patient navigators? And if someone’s interested in participating in Komen’s patient navigation training program, what steps do they need to take?
[00:21:53] Kyandra Fox: Yeah, great question. And that’s really twofold. So as I mentioned earlier, Komen has patient navigators internal, and I don’t think I mentioned, but I will now that we always do a soft launch of our training program, content with the internal navigators, and then anyone can take our exter our external navigation training program.
Our internal commen navigators are really experts and really help address barriers to care. And if a patient needs referred to one, they can start by calling our Susan G. Komen Breast Care helpline. And I will just read the number for you really quick. So the breast care line number is 1-877-465-6636. And so that’s a great entry point and the breast cancer helpline here at Sycom helps with a lot of resources. And one of those is getting in touch with the patient Navigator. For our training program. Anyone can take it. Like I said it’s a program of no charge and has some great resources.
The target audience, if you will, are professional patient navigators, and really, we really focus and all of our content on that barrier piece. And so if you’d like to partake in our training program, feel free to contact me at navigationnation@komen.org. So I will say that one more time. navigationnation@komen.org.
[00:23:42] Adam Walker: Ah, that’s perfect. Thank you so much. Well this has been amazing. You’re both amazing people doing important work. Thank you for sharing a peak and a glimpse into the work you’re doing with us today.
[00:23:56] Kyandra Fox: Thank you for having me.
[00:23:57] Dr. Tracy Battaglia: Yeah, great discussion. Thank you, Adam. Thank you, Keon. Thank you.
[00:24:02] Adam Walker: Join us as we Stand for H.E.R. to drive a Health Equity Revolution where we’ll create a world without inequities where Black people have the same chances of surviving breast cancer as anyone else. To learn more about Stand for H.E.R. and advancing breast health equity at Susan G. Komen, please visit https://komen.org/StandForHER.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.