Community Conversations: Pathways to support for Black colorectal cancer patients (2024)

Khadija Ameen 0:07
My name is Khadija Ameen, and I’m one of the co-founders and the Director of Policy and Research at BLK HLTH, and we’re excited to have you all here today for a virtual conversation about pathways to support for black colorectal cancer patients. A little bit more about BLK HLTH before I pass it to my partner, Nancy at PALTOWN. BLK HLTH is a Black-led Atlanta-based nonprofit focused on advancing the health of Black communities through equity-centered advocacy, research programs, and education. We really strive to uplift community voices, and knowledge, and expertise in the ideation, and design, and implementation of health interventions to improve our health, which is part of the purpose of this event today. Before I talk a little bit more about our event, I will pass it to Nancy to talk more about PALTOWN and how PALTOWN and BLK HLTH got connected on this project.

Nancy Seybold 1:14
I’m Nancy Seybold. I’m the Director of Programs and External Relations for PALTOWN, which is a nonprofit that manages the COLONTOWN colorectal cancer community. We have about 12,000 patients and caregivers in a series of more than 100 groups online. We have groups for patients, for caregivers, for every stage of colorectal cancer, groups for parents, groups for people who live in various parts of the country and overseas. Our focus is on peer to peer support and peer to peer disease education. We also have a website, COLONTOWN University, that provides an enormous amount of information about colorectal cancer treatments and living with colorectal cancer. We have dozens, actually more than 90, DocTalks from clinicians and researchers about treatment options and research. We are so excited to be connected to BLK HLTH. Actually, we got connected through Takeda Oncology, that works with an organization that works with both of us, and they thought we would be good partners for this event. We’re very excited to kick this off. This is the first of several events that we’re going to be managing, and then some interventions, hopefully based on what we learn today, and at our next event. And we’ll talk a little bit more about the next event at the end of this session. But this is our first event and as Khadija said, we’re really looking to just begin that conversation, and to try and understand barriers that our Black colorectal cancer patients and caregivers face when they are seeking to engage with patient advocacy groups, support and education resources, like the ones that COLONTOWN offers. So I’ll turn it back over to you, Khadija.

Khadija Ameen 3:05
Thank you so much. And yeah, as Nancy mentioned, Black patients and Black carepartners face numerous barriers across the colorectal cancer continuum of care. One area where Black patients and carepartners face barriers is in accessing and engaging with patient advocacy groups, with what is called psychosocial support, which we’ll learn more about today, and other forms of disease education to support navigating cancer diagnoses. So the purpose of this event is to raise awareness about some of those barriers that Black patients and carepartners experience, but also to ideate solutions. We want to leave today with a wealth of existing resources that, across everyone in this virtual space we know if we have, and also think of some strategies that we would want to potentially be implemented to improve access to psychosocial support, to patient advocacy groups and disease education for Black patients and carepartners. And as Nancy mentioned, this is the first of a series of events. So this is our first virtual event. We’ll be having a follow up in-person event in Atlanta, Georgia on October 20th to hear more at the local community level, some barriers and facilitators to accessing support and disease education for Black colorectal cancer patients, and then we will use the insights from you all to design an intervention that’s community-centered that we can hopefully implement in both Atlanta, Georgia, as well as Detroit, Michigan, where PALTOWN has a large base as well. So this event is going to be very engaging. We’re going to start with a wonderful panel that will kick off in a second, and then really engage you all to really think about some of these barriers and opportunities for advancing access to support in education throughout both the panel portion, as well as through the activities we have planned for you. We want you all to share your feedback and engage, and ask any questions. We’re a small group so at any point you have any comments or reflections or questions, drop them in the chat. We’ll have a section at the end of our panel for Q and A, so you could come off mute and vocalize any comments or questions, and then again, the second half of this event will be very interactive, or as interactive as we can be in a virtual space, so you’ll have plenty of opportunities to share.

Khadija Ameen 5:57
But now I think it’s a great time to kick off our panel. We’re really privileged and honored to have brought together a group of black colorectal cancer patients, carepartners, providers, navigators, who have direct lived experience with some of the barriers and opportunities to seeking psychosocial support and disease education. We have Nia Jones, who is a patient advocate with Color of Gastrointestinal Illnesses with us. We have Deneen Richmond, who is president at Luminous Health Doctors Community Medical Center, and also a member of PALTOWN’s board of directors. We have Meagen Lockhart, who’s a carepartner with COLONTOWN community. We have Barbara Thomas-Sirleaf, who’s a cancer care liaison and a patient navigator from Northside Hospital, and we have Donna Williams, who’s an oncology nurse navigator from Northside Hospital as well. So thank you all for joining us today for this important conversation. I will start in general BLK HLTH, PALTOWN, we like to start with level setting to make sure that we all have the same baseline awareness of some of these terms and concepts we’re talking about. And really a focus of today is thinking about well-being, not just physical well-being of colorectal cancer patients, but overall well-being outside of physical health. My first question is to Donna, who is a nurse navigator, if you could share with the audience how colorectal cancer impacts one’s well-being outside of their physical health?

Donna Williams 8:01
Sure. So colorectal cancer impacts the patient’s well-being in a number of ways. There are several different areas that we’re going to look at this evening. First we’re going to look at the emotional aspect and the psychological aspect of things patients, I think emotionally that’s very important, because a cancer diagnosis is never easy for the patients, and that can be displayed in their emotional well-being. You see anxiety, some depression there. They fear the diagnosis. They fear the outcome, lifestyle changes, and all of those will impact. And one thing we have in place here at Northside as a part of our multidisciplinary team, we do have oncology social workers because it is important to get our patients connected, because for them to even start dealing with other aspects of care, you gotta get them mentally prepared, get them there, and at that point they’re not even understanding exactly where things are in terms of a prognosis, a treatment, you? It’s just a fear that overcomes – and dying, that’s very important. And then we also look at mental fatigue. They get so overwhelmed, that this can be mentally draining for the patients. We also look at the social impact. A cancer diagnosis can lead to social isolation for patients. It can limit their interactions. Sometimes with treatments, their immune systems are weakened so that prevents them from having gatherings or some interaction that they would normally do. So sometimes that gets eliminated, or at least put on hold for a while, while they recover, and again, that too, is overwhelming for the patients. They experience fatigue, and they can get disconnected from their friends and family for hospitalization, surgeries, frequent, doctors visit, and it really takes a turn in their usual lifestyle events, so that can be really overwhelming for the patients as well. Then we look at role changes for the patients. You have patients who have shifted their family dynamics. You have the care provider, you have the main, say, breadwinner of the family, and they become dependent on others for care, and that’s a little difficult as well, especially if they take on that role where they are the sole provider, or the main provider or the main caretaker, and to switch places, that’s also a devastating for the patients. And then it also creates a financial strain on patients. As we know, cancer treatments are super, super expensive, and sometimes even when the patient is insured, there are other out of pocket expenses and jobs that they can no longer work, or at least for a period of time: some patients for a period of time, for others, it could be for a real, extended time, or maybe not being able to go back to work. So it creates financial insecurities for these patients, and the care can definitely be ongoing, like I said, for a long time. Also for patients who are employed, then that can hinder working, and maintaining their career. And again, it changes their identity. It increases stress, and again, the financial aspect of things. Without some finances the care will not continue. And dietary, life changes also in these patients, as we know with cancer treatments. It changes their dietary status. Part of chemo treatments is change in taste, not tolerating food, or a lot of times you have nausea, vomiting, just different side effects that go with the treatment. So it definitely changes their lifestyle in that aspect, and can be challenging also, because not being able to sustain their well being and their health then sometimes causes a delay in treatments. So, it’s just one thing rolling over into another. And limited physical activities.. post surgery, for those who’ve had surgeries, that creates some limitations. Chemotherapy can reduce their ability to engage, as well, fatigue, and all those side effects that go with the treatment plane, and overall, it affects their entire quality of life. This can have a significant impact on relationships as well. Emotional and physical demands of the cancer treatment can put a strain on relationships, and sometimes lead to tension in the family, and also with friends. Patients become isolated, and one of the things I should have mentioned is some patients may end up with ostomies, and that is a whole different level of stress for the patient, and it changes almost everything. For some patients, they are not even able to look at it, more so to care for the ostomy. And then we cannot forget our caregivers and our families. We have caregiver burnout. And loved ones are acting as caregivers, and they have to go to all the appointments and be able to be up with them when they’re having that course of events, whether it’s side effects from treatments or just inability to sleep, or just from the burden of the disease weighing on the patient. All of these add stress to our patients and their families, and can be pretty overwhelming.

Khadija Ameen 15:15
Absolutely. Thank you for sharing, and when we think about the Black patient experience specifically, we know that Black patients, Black carepartners, experience additional barriers along their colorectal cancer continuum of care, including – and why we’re here today – barriers to accessing support that can improve those social and emotional and financial well-being dimensions that Donna just mentioned. So Deneen, can you share more about the unique barriers that Black patients and carepartners experience when seeking and receiving support during their cancer journey?

Deneen Richmond 15:55
Absolutely. Thank you, Khadija. I’ll start off by saying, in addition to, I know you introduced me as being a president of a hospital, which I am, but I’m also a very recent colorectal cancer survivor myself, just diagnosed with stage III rectal cancer in February of ’23 and literally just finished my treatment with my last surgery in the spring of this year. So it’s real, it’s recent. And I would just say to your question, on the one hand, it definitely gave me different perspectives seeing things, from being a healthcare executive to being a patient. But I’ve been in this, doing this work of health equity for some years. In fact, I wear a second title as the Chief Quality Equity and Population Health Officer for my health system. So, and it’s just personally a topic I’m very passionate about. If we pick up where Donna left off, Donna did an excellent job talking about all of the challenges: social, emotional, mental, financial, isolation, all of those things. And so, people could say, “Well, what’s different?” right? That’s true of any patient facing a serious diagnosis like colorectal cancer. But I think what we have to remember is that in many cases, our Black populations are starting from a different level, so the baseline is already very different. We know through, as as a result of years of discrimination and structural racism that we have, Black patients, regardless of this diagnosis, suffer more disparities and negative health outcomes. There’s a disproportionate number. There’s wealth in our Black communities, for sure, but there’s a disproportionate number of people who are more sensitive to what I’d like to refer to as those social drivers, whether we’re talking about housing instability, financial instability, not having adequate transportation and access, so things then hit you in a different way. And then we also know that we are still dealing with years of just how the health care systems, including the social systems, even when they supposedly there to help people – how they have interacted with Black people and other people of color. So we can’t always access culturally sensitive care. We also know, and I don’t want to get into too many statistics, but just earlier this year, in February, the Commonwealth Fund published a report around disparities where they had interviewed, and did a research study that involved over 3000 healthcare workers, and those healthcare workers talked about — over half of them said that there is still racism against Black and other people of color in our healthcare systems. It is still a major problem, and the overwhelming majority of them also shared that they have personally witnessed discrimination against patients in their workplace. The other thing that we know from that study and other studies is that health care workers, and I’m including social service workers, and that as well, are more accepting of White patients advocating for themselves, than they are of Black patients. So even when Black people are trying to advocate, they don’t get the same response from our formal systems. And then last thing I just want to mention is that the stigma again, this is something that affects all people, but we know in our community, and again, this is not to stereotype, because everyone’s family is different, but there are taboo subjects that you just don’t talk about. As recent as this weekend, I was having a conversation with someone I hadn’t seen in a couple of years, and she said, “I just found out that my grandmother died from colorectal cancer. It was never talked about in my family”. And so we have these, we could call them secrets, or whatever, the taboo subjects, or just, these aren’t the things we talk about around our dinner table. So people come into this not knowing their family history, not knowing how to access resources, and then when they try to access resources, being treated differently. And so all of those barriers just add to the burden that anyone recently or anyone diagnosed with colorectal cancer is facing.

Khadija Ameen 20:38
Absolutely. Those are great points, and I would love to hear from Barbara, as a nurse navigator, some of those barriers that you’ve directly witnessed when providing support to Black patients as a cancer care liaison.

Barbara Thomas-Sirleaf 20:54
So Donna is a nurse navigator. I’m a non-clinical navigator. What my role is, is really to try to level the playing field for all patients, including Black patients. I typically focus on trying to resolve barriers to care. So as Deneen and Donna have said, with Black patients, Black colorectal cancer patients, we have to be a little bit cognizant of all of the issues that a Black patient at the table than other races. As the studies have shown that Black patients are typically under- insured or uninsured. So when I meet with a patient, I introduce my role, and I try to take a conversational approach to see where they are first, to build trust because there is mistrust in the healthcare system, even though I look — I’m a Black woman sitting across from a Black patient, there’s still that guard around a patient. So just coming out, getting to their level, getting to know the patient, establishing a relationship. At Northside, we do have the multidisciplinary team, which consists of, the nurse navigator, which s what Donna’s role is. My role is a cancer care or non-clinical navigator. We have social work. We have nutrition support. So just having that multidisciplinary approach to meeting a patient who might be so, really overwhelmed at the news of the recent cancer diagnosis, and saying, “This is what I do. This is my role. This is what I’m going to help you with. I see that you currently do not have insurance. Okay, let’s talk about that”. Learn more about what their needs are. “How can I direct you to get in insurance if you’re not eligible for insurance? What assistance program can I sit down and talk to you about?”. Go through applications assessing educational level to see if the patient is able to complete an application, is able to read an application, go through the guidelines of eligibility, just establishing trust. Sometimes you call a patient after a diagnosis and you introduce your role, they are so overwhelmed that you might have to pass it on to a social worker first to get that emotional part taken care of. And then come back to to my role to say, “okay, you’ve talked to the social worker, you’ve gotten some emotional or behavioral health resources, and counseling and all of that. So now let’s sit down and talk about insurance or how to pay for your care”. Northside has a very amazing, amazing, amazing program that we apply to. But of course, we reach out to we tap into Medicare, the marketplace, different organizations, but just making sure that I am focusing. I don’t do a generalized approach to every patient, especially the Black population. My approach is very individualized, as I’m talking to the patient, whether it’s housing, transportation, just knowing what resources are available, what they might be eligible for. So I do get deep, and I ask a lot of questions. Sometimes it gets personal. Sometimes there is a little bit of drawback. But again, just building trust, not coming in too hard or harsh, because that might turn off some patients. I might have some patients retreat and say, “I’m not providing you that information”. Patients might not want you to call their caregiver and let them know about their diagnosis, like you were saying. I have encountered patients who are from the Black population, who their family members don’t know they have cancer. It might be stage IV cancer. So just building that trust and encouraging them to use emotional support, counseling and all of that, but just approaching my patients in an individual setting and basis, and using the multidisciplinary team to make sure we provide that care for the patient.

Barbara Thomas-Sirleaf 25:30
Absolutely, and thank you for emphasizing the importance of a multidisciplinary team. The importance of both those clinical and non-clinical roles, and ensuring that Black patients have access to care and support. I will pass it to Margo now, can you share your experience seeking and accessing support and disease education as a Black carepartner. Did you face any challenges in your experience?

Margo Lockhart 25:58
I think being the carepartner is like a whole other level, right? Because you’re not the patient, but you’re walking hand in hand with the patient. So my husband, he was first diagnosed with stage III colon cancer, and then he was later restaged, and it was at the restaging point where I realized that I needed to have more information. I was in other, random Facebook groups. And one night I’m scrolling, because, as caregivers, we scroll at night just looking for, and grasping for any information that can help because you don’t know, there’s so much you just don’t know from the patient side and the caregiver side. And so someone in one of the groups mentioned COLONTOWN separately to another question, and it was the best decision, I think, that as a caregiver, that I made for not only myself, but for my husband. So when my husband was staged to stage IV, I — first, let me just say that COLONTOWN is so organized and so well, it felt like, once I made that initial contact, it felt like I had an army of people who were like, join this group. It was just overwhelmingly fantastic. And when I landed in the stage IV group, one of the things that was important to me, that I think is a barrier to getting the advocacy and the help that a Black patient needs is the misinformation as it pertains to any type of cancer diagnosis, but particularly colon cancer, right? Because we know a lot about breast cancer, because that’s where the funds have traditionally gone, and the marketing has gone, but we don’t know a lot about colon cancer, right? We just know that, especially me, in the Gen X generation, at age 50, you’re supposed to get a colonoscopy. That’s about all you know. And in my husband’s case, that was what it was. It was a month after his 50th birthday. And so in a year or two after the guidelines for age had changed, but there was so much misinformation about everything, about dieting, about just everything, and a lot of it leaned to blaming the victim. And that wasn’t really working for me. I was just like, this is not the help that I need. And so I think just due to persistence and getting into COLONTOWN and into the stage IV group, what I found was so much information based in fact, based in scientific studies, and I felt like I was given a gift. And so that, in and of itself, for a Black caregiver and a Black patient to be in a space where the information that is given is factually and scientifically based right, because as Black people, we know the church got you, if you’re a church going person right? We have organizations like our Greek, and we have all these organizations that, they got us, right? They’ll bring over the pie and a pasta. But we need the science, and the science is what helps us as a caregiver. The science is what helps me sleep at night, right? It’s like, okay, I need that second opinion, right? Could I learn that in a stage IV group in COLONTOWN? And I need to understand that the sugar thing is a myth, largely, right? I need to understand that. So there are just certain details that you need to, on top of the fun conversations, there are fun conversations that we have fantastic administrators and and facilitators in that group that remind us to take care of ourselves, which is a core tenet of being a a caregiver. So I think that the first hurdle was finding a space where as a Black person, I would feel comfortable sharing, right, because we know not all Facebook groups are caring. And so when I started seeing people in a group sharing their stories and the different people were from all different backgrounds, is very diverse. And so as a Black person, you look for that diversity. You look for, does anyone in this group look like me. Is everybody close to looking like me. And once you see that, and you also see that the administrators are very — I think also the guard rails were very important to me – there’s, there’s a very, zero tolerance for sharing information that is not scientifically based, and I think that that was very appealing to me. And so I think that once I found that group and I felt like I had a community, but I did quickly realize that there was more advocacy needed right for Black people to find out how you find COLONTOWN. So now, when people ask me, do you have support? I say, “Yes, it was really great. We had it” And I tell them about COLONTOWN, and I share it in my personal networks, because you never know, especially at my age, you have to let people know, because someone else in your network might be diagnosed five years from now, and they that’ll be a trigger. So I think that having that group was, and still is extremely an important part. Earlier this summer, my husband, it was after almost four years, it was our first emergency hospital visit, and that will shake anybody to your core, you know. And I was in the hospital and talking to his oncology team, and they came in and they asked about support for myself and things of that nature, and I told them, I’m like, “I belong to COLONTOWN”. And when they said they knew what I was talking about, that was like, “really, like, you know?”. And when I talked to our MSK doctor, who was a second opinion doctor, and I mentioned COLONTOWN and she knew, that speaks to the work that has gone in. And so it’s really, I’m excited about the fact that some, like a organization like COLONTOWN has made the effort to partner with BLK HLTH. BLK HLTH, actually, the content will come on my feed, I guess, because of all the research I did late at night. And so to find out that this was a partnership, it makes me very excited. I have a lot of hope for the future in terms of how to reach Black people and other marginalized communities. I think technology will play (by trade, I’m in tech) so I think technology will play a large role in helping to connect more patients and their caregivers to organizations like COLONTOWN and BLK HLTH for that support. So that was the hurdle, and I’m glad that it’s it’s working out well, and I’m looking forward to the future in terms of this partnership that you all have, and how we are going to be able to market in and reach more Black people.

Khadija Ameen 33:48
Thank you for sharing and those kind words, and you really touched on the purpose of this event. There are already wonderful resources out there, and one of the hurdles is just raising awareness around those existing resources, and that’s certainly what we want to do, both through this event, but through this entire project. And Nia, I have a follow up question for you, reflecting on your experience as a carepartner, a caregiver, what would have made your experience finding and engaging support options easier?

Nia Jones 34:25
Sure. So I know unlike Margo, I only had 90 days to care for my husband after we had gotten his diagnosis of stage IV colorectal cancer. And so our nurse navigator was certainly there. Our doctors were there, and kind of walking hand in hand with Bryce during – as we were on ice skates at this point – turbo ice skates is what it felt like. And so what I found that would have really helped in hindsight, being 20/20 is honestly having more people that looked like us during the process. And so, total transparency, everyone in the medical system, where we lived and where I live now, was White, and so I’m based in Maryland, specifically Baltimore. If you know anything about where I am, I’m surrounded by some national and worldwide names. What we found was that immediately we started to be affected by respectability politics and thinking that if we showed up at the hospital dressed a certain way, they would treat us a certain way if we showed up with our collegiate wear on, that they would know that we were smart enough to understand. And you know, having five degrees between the two of us, we shouldn’t necessarily have to feel like we need to do that, but we did anyway, we still felt victims to that. And so really having, although we had our nurse navigator, who gave resources for yoga and massages and prescription medication reduction in cost, and nutrition help, it would have just been a little easier to take in all that information. If the person spoke our language, like, we get your doctor-speak, we get you know exactly what you’re saying. My husband works for the National Cancer Institute, and so if we had that element of storytelling, if there was some app where I could have found someone telling their story, if there was some place that I could have gone that had those resources specifically for people of color and Black people, if there was a place I could have gone for words of affirmation and comfort, kind of to echo what Margo mentioned outside of church, right? He was also a pastor. And so we had church. We had Greek letter organizations. We had all those other things. But if we would have had individuals that had gone through the same experience, that looked like us, I think it would have given us something to hold on to, outside of the information, the prescriptions, all of the things that any cancer patient would have experienced, I think what I know just in my work as as a clinician in mental health, is that we heal with the power of community. And so without that, we had a community, but it didn’t look like us. And so it it would have helped to have have known about organizations like COGI back then, and so I offer that to start.

Khadija Ameen 37:45
Thank you for sharing, and we have folks uplifting you in the chat and having shared experiences. And I think that’s a wonderful segue to Deneen and what health systems can do. So if Deneen, if you could talk from a health systems perspective, what are strategies that can be taken to better connect Black colorectal cancer patients and carepartners to culturally reflective, accessible support and disease education?

Deneen Richmond 38:16
Sure. So I just start by saying, I really appreciate Nia’s comments. And I’ll tell you, there’s not many people in the C suite who look like me, either. So, unfortunately, we get used to being the one, or, alone, and being “the only” in many rooms. I felt that from childhood all the way to where I am now, and in my career. So I’m gonna start with long term, and then I’m going to talk about, what are the things we can do, very briefly, immediately. Long term, we have got to change the pipeline, right? We need healthcare workers who reflect the communities that they are serving, and then we need healthcare institutions to make sure that their recruitment strategies are attracting people. Because it’s not always that there’s not someone out there, but if you always are recruiting in the same circles, you’re always going to get what you get. So, in my own organization, for example, we have really been able to change the look of what our medical team looks like, our leadership team, etc, but in some ways, changing how we recruit and so, how are we connecting with the Black professional associations that represent, whether it’s physicians or therapists or pick a profession, there’s typically a Black professional organization that has affinity with those types of individuals. How are we building the pipeline so we are reaching all the way back? Down into elementary schools and high school and all the way up, so that we are letting people know of the types of careers that are available, how they can avail themselves of it, giving them experiences that perhaps they wouldn’t otherwise have. Earlier this year, I spent some time at, and media was there, at an elementary school that is largely underserved. It literally was a mile from a hospital. And at the end of that, there was a young Hispanic that was a fifth grader. The reporter asked him, “so what do you want to do?” and he said, “I want to be a nurse. I want to become a healthcare professional now”. And she said, “Is that what you were thinking before today?”. And he was like, “No, it was only as a result of that interaction and conversation that we had had.” And now we’re continuing that relationship so that we can nurture those children so we have got to build the pipeline. In short, we have to be willing to get out of our comfort zones and the traditional ways, and make sure that we’re partnering with the right colleges, HBCUs, professional associations, etc, so that we can bring a more diverse workforce to our community, so that they can be reflective of the communities. All of those things are things that we’ve got to get started today. We should have been started yesterday, and we can’t wait ’till tomorrow. So it’s urgent in my mind that we do those things, but then there are other things that we can do. I started off by talking about that study. So we know that there is implicit bias in our workplaces. And all of us have biases. Everyone on this, all of us, no matter what you look like, we all have our own set of biases, so we know that that exists. But we also know that there are things that we can do. In some states now, there’s mandatory implicit bias training. A lot of it is happening through the maternal health side as the jump starter, because of the vast disparities and maternal mortality and outcomes that we’re seeing there, but it applies to colorectal cancer and every aspect of getting health care. And so when you bring people’s unconscious biases forward, and then you support them, and that’s what health care institutions have to do, and not just recognition that they have the bias. And then two, more importantly, is knowing that you may have this bias or this tendency, how do we help you to to make sure that it’s not impacting the way that you give care? So we need healthcare institutions that are willing to stratify their data along race, ethnicity, language, all of these dimensions, because we don’t know all the time that there may be a disparity, because nobody is coming to work and saying, “I’m going to treat that Black person different”, but we know it happens. So we’ve got to bring the data. Doctors and others pay attention to data. They’re scientists at their core. So we’ve got to bring the data forward. We’ve got to train people in implicit biases. We’ve got to train them in how you deliver culturally reflective and sensitive care, and then we have to make it comfortable for people to speak up and take those concerns seriously when they’ve experienced something. Because I think too many of my colleagues have on blinders and to probably say, “Oh, this would never happen in my healthcare institution”. And I’m here to tell you, it absolutely is happening, and it’s probably happening every single day. So we have to be willing, as healthcare leaders, to seek that type of information and then be willing to address it the same way we would any other kind of complaint or grievance that we hear about. So those are just some of the things that I think that we can do as healthcare systems to really be the catalyst for change in these areas.

Khadija Ameen 43:55
Thank you for sharing, and I hope some of those strategies and ideas have all the attendees thinking of their solutions, and we’ll have an activity at the end for you all to share and uplift your ideas. I wanted to end this off with one more question, so that we have time to get to some Q and A and the activities, and I’ll pass it back to Nia. And you had mentioned earlier about Color of Gastrointestinal Illnesses. I was wondering if you could share more about your experience being part of a patient advocacy group.

Nia Jones 44:28
Yeah, it has been, honestly, a way in which I can be what I didn’t have during the three months that I had supported my husband, and so we have traveled to some spaces where we’ve been the only Black faces and Black voices in rooms that talk about colon cancer and colorectal care. It provides support for individuals, specifically COGI provides support for individuals before and during and after care, or their experience, but not just cancer, all kinds of gastrointestinal concerns that we know plague the Black community, right? And so oftentimes, growing up, you’ll go drink some ginger ale or eat some crackers, and really debunking those myths around how we’ve traditionally cared for ourselves. And so I think this work for Black people specifically, has to, as Deneen mentioned earlier, reach all the way back right, and really reach and speak to individuals that are in college, that are in grade school about their care and their health, and so it has really opened my eyes to saying, “it’s really much bigger than getting to this end result of stage IV cancer”, right? What were all of the other things around nutrition and conversations with doctors and therapists and with parents, and really looking at your lineage, and generationally, how this may have shown up for you. And so this group specifically has really shown the power, as I mentioned earlier, of healing together and the power of community. And so it’s been an awesome task to serve with them.

Khadija Ameen 46:26
Thank you for sharing. And now everyone in the audience, you have two patient advocacy groups that you’ve heard of, so COLONTOWN and Color of Gastrointestinal Illnesses. Thank you all so much for your wealth of wisdom and lived experiences.