DIGETHIX Podcast Episode 5: Black Maternal Mortality and the Informatic Problem of Subjective Experience

Seth interviews shaunesse’ jacobs. shaunesse‘ jacobs is a Ph.D. student in the Constructive Theology and Ethics track at the Boston University’s School of Theology. She earned her Bachelor’s degree from Emory University, where she also completed a Master’s of Theological Studies and a Master’s in Bioethics. She is interested in communal incorporation of religious practices and theological doctrines when facing injustices in the U.S. healthcare system, specifically around the issue of black maternal mortality. This is part one of a two-part look at how questions of race are intertwined with healthcare. 

 

In this interview, Seth talks to shaunesse about black maternal mortality in the US. Maternal mortality refers to the rate of death  in childbirth per 100,000 pregnancies.  The key questions for this episode are: what factors lead to discrepancies in hospital care? Why would doctors differ in their assessment of the pain that is reported by their patients? How does the question of race intertwine with the care that someone receives? What does it mean to have trust in the doctor-patient relationship?

 

Potentially helpful links:

https://www.npr.org/2017/12/07/568948782/black-mothers-keep-dying-after-giving-birth-shalon-irvings-story-explains-why
https://www.cdc.gov/media/releases/2019/p0905-racial-ethnic-disparities-pregnancy-deaths.html
https://www.cdc.gov/healthequity/features/maternal-mortality/index.html
https://www.cdc.gov/mmwr/volumes/68/wr/mm6835a3.htm?s_cid=mm6835a3_w

 

Music: “Dreams” from Bensound.com

Episode Transcript

Seth Villegas 0:05
Welcome to the DIGETHIX podcast. My name is Seth Villegas and it’s a pleasure to share today’s conversation with you. In this episode of the podcast site interview shaunesse’ jacobs. shaunesse’ is a PhD student in the constructive theology and ethics track at Boston University School of Theology. She earned her bachelor’s degree from Emory University, where she also completed a Master’s of theological studies and a master’s in bioethics. She’s interested in communal incorporation of religious practices, and theological doctrines when facing in justices in the US healthcare system, specifically around the issue of black maternal mortality. This is part one of a two part look at how questions of race are intertwined with health care.


In this interview, I talked to shaunesse’ about black maternal mortality in the US. maternal mortality refers to the rate of death in childbirth per 100,000 pregnancies as she needs to explain their disparities between different groups of people in terms of their maternal mortality rates. before asking why these differences might exist, I want to step back and explain a larger issue that is vitally important to any question of information ethics. If you really think about it, how is it that we ever know the facts on the ground? Let’s think about a specific situation. You go in to see the doctor for some pain you’re having in your wrist. It may not be immediately obvious just looking at your arm what the problem is. So the doctor has to ask you a series of questions about what you’re experiencing. For the most part, these questions are about pain. Where’s the pain? How much pain are you in? What kind of pain is it? Immediately we can see that there’s an information problem in progress. How can the doctor determine what is going on? Any diagnosis is a mix of information from tools, such as a person’s current blood pressure, heart rate, and other characteristics, along with an interpretation of the patient’s descriptions about how they’re feeling. The central problem I’m trying to describe is starting to become clear. How is it that we move from a person’s subjective experience to an accurate diagnosis? With that in mind, the key questions for this episode are what factors lead to discrepancies in hospital care? Why would doctors differ in their assessment of the pain that is reported by their patients? How does the question of race intertwined with the care that someone receives? What does it mean to have trust in the doctor patient relationship?


This podcast would not have been possible without the help of the digit ethics team Nicole Smith and Louise Salinas. The intro and outro track dreams was composed by Benjamin Tissot through bensound.com. This episode has been cut and edited by Talia Smith. Now I’m pleased to present you with my interview with shaunesse’ jacobs.


Hello, everyone, welcome to the DIGETHIX podcast. It’s a pleasure to have shaunesse’ here. And the story I wanted to start with is actually we’re at the Boston Theological Society. And it’s funny because I don’t even know how long ago this was because we’re, you know, kind of recording the time of COVID. So it could have been last year, it could have been two years ago. But I remember I was talking news, particularly sympathetic because you were a TA in a class that I had to TA, which is an introduction to Christian traditions and engaging majority after that. And I’ve been thinking about you a lot, in part because I know you had to make this transition not just from this really insane class with you know, 80 to 90 students. Really overloaded, but then to having to do all of that same stuff virtually somehow. Yes. I don’t know if you wouldn’t mind starting with that. Just Just tell us like, what was that like? Because I mean, that’s, you know, out of the frying pan into the fire sort of thing.


shaunesse’ jacobs 3:46
Yeah,you took me right back there. So thank you for that. I, let’s see. Yes, that was about a year and a half ago, when we were at that that meeting. There was right before COVID happened. And I remember. exactly like you said, all of the sympathy you all gave me like y’all understood it at the core. But teaching so just to kind of like, start out because this was my second year, it was my first TF’ing assignment, which is an experience in and of itself, because you’re taking a full course load and you’re TF’ing, when you first walk into it, you think it’s going to be not so bad, you’re really excited, you get to kind of do these professorial adjacent things, and then you get in the class and exactly like you said, everyone is overwhelmed. There’s far more responsibility than you imagined, and everyone’s just trying to survive. So you went from surviving, at least to being able to go outside for walks and eat at restaurants and probably like, grade together in a coffee shop to having to survive in isolation. And I think the thing that comes to mind, most often when I think about TFing during COVID for that particular class is how I shifted from teaching to almost being a pastoral care counselor. I think in one way, seminary kind of requires that educated to a certain extent, because students don’t understand the emotional load that they all kind of have to carry on their own when they are confronted with new theological concepts and frameworks that they never had to consider before. And then everyone became in need in the most vulnerable ways. And then people have to start opening up to articulate this is where the limitations were. And it wasn’t just a concern of first year students, everybody was just breaking down in this very fascinating way. So that’s what really comes to mind. For me when I think about teaching and COVID, that there’s so much pastoral care, I have to balance because some days, none of us have the capacity to show up and to perform well. And we have to find ways to make space for the meager shreds of ourselves that we can bring to the table on any given day, and just try to kind of get through the moment.


Seth Villegas 6:08
Right, and I’m glad you’re bringing up this aspect of pastoral care, because actually, in my very first semester with that class, I had a really hard time with that, I think it’s hard because, you know, I gone to Stanford, and some of the things that you don’t actually talk about about going to an elite school is the professor’s really don’t care about you. They have their research, you want to get to know some ta is pretty well, but in terms of your connection with professors, you know, the, the more aloof you can be to your students, the, the higher prestige must be. And so, you know, and so that’s a bad thing to be trying to learn from, but especially because coming to seminary, people have all kinds of reasons that go well beyond just knowing what the material is, they’re really interested in talking about their lives, talking about their feelings. And, you know, and those things were all very, very alien to me, because I never thought those things really an environment and disseminated degree. But as I’ve gone through that degree, you know, I’d kind of avoided that as much as possible. But you know, they kind of bring it in, and to have people then going through this whole other thing, that and it’s not just like they’re going through it right, you’re you’re going through it to like the professors are going through it. And what was kind of going through your head as you’re trying to figure out like, Well, how do I plan a discussion? How do we make it so that we actually don’t mind being here?


shaunesse’ jacobs 7:34
Yeah, well, first off, I fully connect with you on that. That reality of needing to find a way to make space for feelings. So when I was an undergrad, I went to Emory. But I was in the religion department. And I often tell people that I learned how to really sit with religious and theological tensions, because I was pushed by the rabbis. So I concentrated in Judaism. And I really had to understand why I believe what I believe, but also how to articulate that in the public square. Because relying on I believe statements, or I feel statements was not what the conversation was about. And to be able to have that training between the ages of 18. And 21. was crucial for me. So I went into my MTS, they also stayed at Emory. For that one, I went into my MTS, with this expectation that seminary would be like, an academic department of religion, where we’re really debating ideas and concepts. We’re not talking about our faith and our feelings. And when I got there, I struggled there as well, because every class kind of devolved into feelings talk. And I was like, What is this? I don’t understand, am I only saving grace was my other master’s program in bioethics. And that’s where I kind of got this academic banter to be able to engage on these very deep and analytical levels, but I didn’t have to bring feelings in. So then that fast forward to me to be you, where it’s the first thing that students expect to talk about how they feel why they’re struggling with the text, not necessarily the pros and cons of an argument. And I would get together with my other cohort members, like, okay, Are y’all having the same issues? What’s happening? And, yeah, it was very, very difficult. And another thing I’ll add to it is just like the identity factors as well, so myself, and that one other court member, we’re both women. And then there’s a guy who was the other TF. And so students would bring all of these emotional things to us that they wouldn’t bring to him. And when we sit and exchange our narratives, we’d understand there was clearly a difference across gender that was happening with the way that students engaged us and the expectations they had of myself and the other female TF making space for their feelings. And so it the difficulty was trying to To find a balance of asserting that we are here in an academic environment to learn and become critical thinkers, and yes, your emotional processing will happen. But a lot of times it needs to be an internal thing. And so then once we get to COVID, I think, I think a decent foundation was late for that in the fall semester. So then we get to the spring semester, like you said, all of that goes out the window. And what made it even more complicated was that I had COVID for about three months. So my partner works at an independent school in Cambridge, we believe she possibly got it was one of the families child’s diplomas, and they all got sick, and she had contact with one of the students. And then I was taking care of her. So being in close proximity with her, I then got more severe case. And so between being really, really ill for about three to four weeks, and then having chronic breathing conditions for two months after that finishing up the spring semester was damaging on my body. But I still felt the need to want to show up for my students, because we’re all struggling, at least I can take a nap after discussion group, right? And so I just creating space where like the first five minutes, what are limitations for today, let’s get it out. Now that we kind of had this moment of commiserating with one another, let’s get to the work because you also will need skills to go out into the world just because the global pandemic is happening doesn’t mean that you don’t need to know how to show up as a chaplain to show up as a pastor to show up as whatever. And just kind of having that conversation that that skills they gained are even more crucial now than they were when they first entered the program, I think was the best way to kind of push the the reality that they needed to still learn, they needed to still engage, they needed to figure out how to balance what they were feeling with what they would balance with future co workers, because their feelings couldn’t be center all the time. So that’s kind of the way that I framed it, it was very challenging. But we eventually got there. By the end of the semester, I think with a lot of practice and trial and error, it just creating a space to vent before getting into the material.


Seth Villegas 12:02
Right. So you’ve definitely set a lot of things there. And I just want to kind of unpack some of it. So I think part of it was this, you know, there’s kind of gendered expectations. Yeah. And kind of despite your background actually being on the more academic end, you have more in religion, the students don’t necessarily know that going in. And so they bring these other sorts of things to their experience with you, not knowing you. And I think that that can be a really challenging part about teaching in general. Yes, absolutely. And I think the other part of it is creating a space in which people are actually able to talk about something so sensitive, such as you know, how they’re doing with COVID. And in all likelihood, not just how they’re doing what’s coming up out of their families are doing with COVID may be sick people who may be even worse than sick, it can be really hard to think about, well, why is this here? Like, why am I here? And why does this matter at all, given everything that’s going on? And I think that particularly in seminar environments, people think about that a lot of why is it that I’m learning these things when I could be out there doing something. And I’m actually not sure how your students responded, given that, you know, they couldn’t go out in the same way. Because when I was teaching the same class, we were going through those things, and we’re talking about, you know, some dead theologian. And you know, they’re they’re just not sure why they should care when they could go do something, but then to suddenly have their options kind of restricted like that. Because it’s not just that we’re stuck in seminary, but we’re kind of like stuck where we are to this physical confinement that goes along with it.


shaunesse’ jacobs 13:34
Absolutely. So the way that I kind of addressed that I tried to be as humorous as possible. And so I would start every discussion group with whatever popular meme was happening. And then if you remember, but at the start of COVID, everybody had all of these zoom meetings going on? And so I would just start with one of those like, yes, funny moment. And also, what is the saying about the moment that we’re in, you know, why? Why do we need to really sit with this cultural phenomenon of memes capturing our current climate? What kind of artifact Will this be? And how will you look back on this to really understand what happened so that you can speak to it in a way that is very different than how you would have spoken to it your first semester. So that’s kind of how I tried to capture the importance of still learning this material. Because being in a space where none of us had never encountered before everyone is looking to the past, we’re looking to hit this, these historical moments. And you have the perfect time to learn this history and these theological concepts to be able to apply them in the future sense. So that was that was one approach. I don’t know if I was successful, but that was my approach.


Seth Villegas 14:42
Right? And, you know, I think often for us, too, as we’re kind of learning these things. One of the things I was really grateful for us the way my students are really patient with me learning, trying things out. And I think that that’s actually one of the really great things about being in this kind of environment is is getting that sort of, you know, to to drive feedback, right? You give them feedback on the things that they’re doing. But they’re also giving you feedback on you know, I like this. I didn’t like that. Absolutely. And I think that that’s even more important during a crisis. And oftentimes, and this is funny again, thinking back to my own experience, my students would be really thinking about like, oh, what am I going to do in that crisis happens? But then something does happen. And it’s like, oh, this actually is no joke.


shaunesse’ jacobs 15:22
Yeah. It’s so true. And I think, speaking to the comment about bidirectional feedback, you’re absolutely right, I learned so much more than I think I ever taught this past year. And especially with that class, I think, at that time, it became Christianity Engaging Modernity. But it was so fruitful to be able to take these conversations back to staff meetings, and engage with the professors, because we all were learning things together as well, just trying on new hats to see how we were going to make it through the rest of the semester. And it was a new age of all of us having to be vulnerable as well, to a certain extent. And that we’re struggling to get timing, right. And we realized that one minute over on zoom feels like an hour over on zoom. So everybody practiced a lot of grace. And that was very beautiful to witness and be a part of.


Seth Villegas 16:17
If we could transition a little bit, I’d love to talk a little bit more about what you’re doing, I think maybe a good starting point would be how you structured your exams. So the way that it works at BU, the PhD program basically has you do take classes for a couple of years, you know, with, you know, with master’s students, other doctoral students, but then you get to the exam stage. And at that stage, it’s, you’re supposed to be coming up with a specialization of sorts. And so I was wondering if you could take us through a little bit about like, what is the bigger research question that you’re trying to tackle? And then how have you kind of been using this exam phase to try and prepare yourself to actually tackle that?


shaunesse’ jacobs 16:57
That’s a great question. Thank you for that. The bigger research question has evolved quite a bit. But in its current iteration, it is me seeking ways to hold black religious institutions accountable for actually some more supporting and promoting black wellness. And that is through this specific case study of black maternal mortality and morbidity. And I came to this, I hope it’s helpful to share how I got to this, but I worked after my master’s program, I worked as an analyst at a healthcare consulting company in Atlanta. And what that entailed was me receiving these accounts from hospitals and figuring out why insurance companies denied them, and then going through the appeals process. And then I kind of shifted and pivoted into just looking at medically necessary cases, to figure out how to delve into the medical records and find a clinical argument to support the claims being paid. And in that work, I could, I kept seeing all these cases for prenatal care being denied by big insurance companies, because they felt that it wasn’t medically necessary. And most of the women whose claims were denied were from black and brown communities. And they were struggling with preeclampsia, just like high blood pressure during pregnancy. They also had concerns that they couldn’t articulate, but they knew something wasn’t right. And so seeing this trend was really, really harrowing for me. And then while I was in Atlanta, there was Professor PhD at the Center for Disease Control. Dr. Shalon Irving. So she specialized in epidemiology. She was in the military prior, she worked there. And she died about five or six weeks after giving birth to her daughter from pregnancy related complications. And she’s she was articulating to her clinician this morning in the body, and they’re like, Oh, no, it’s not a big deal. And she died shortly thereafter. So then I began to see that this trend is actually a real thing that’s happening on the ground, people have been talking about black maternal mortality and morbidity forever. But that’s usually in public health spaces and within grassroots organizations, not once in my life of being a black Baptist had ever heard us talk about this subject at church, not in any religiously affiliated event. And so I realized that black women are some of the like, in terms of like pew research studies, they’re some of the most religiously affiliated demographics in the US. Yet, when it comes to their physical well being and their embodied states. Religion is actually stepping up for them in these in these ways, especially when it comes to the birthing crises that we’re seeing. And I think this is across the board because the numbers are egregious for women, period. And then us we just look at pregnancy related complications and deaths from those pregnancy related complications. We rank fairly low amongst developed nations. It’s really awful. And when you add race into this conversation, which is so unique as it is in the US, it becomes even worse and despite educational attainment, despite income, despite age, these statistics are worse for black women almost universally. So they just see these trends made me want to figure out how to be a part of the conversation. And that’s kind of like a precursor to trying to figure out what this actually looks like to get involved. Because I am in a School of Theology, religion has to be a part of the conversation, whether I want to claim I’m a theologian or an ethicist, or whatever. And I started out really trying to figure out things from more of like a bioethics side of things. So what are medical records saying that could give us some kind of clue into how treatment is differing across racial ethnic groups, there’s a lot that has been written about that in terms of theories and how communities of color fill, increase their medical trust, if they’re being treated by a provider of color. There are trends in charting, and how trading is different for communities of color than for white communities. And so that’s kind of like the research background that I wanted to take into delving into medical records at a hospital here in the Boston area to see what these trends are saying locally, and how this local analysis could play a part of me looking at how to hold communities accountable. Because I mean, I can’t look across the entire nation, that’s like way too, way too big. I got to finish the degree at some point, right. And so I did a summer fellowship with my advisor. And I understood how big this public health crisis actually was. I think it’s when you’re developing your research question in a PhD program, you know what you want to do, but you don’t really know how big the monster is. And so you kind of have to find your place in the conversation. And I have learned that that place is holding religious communities accountable, because that’s also a way to increase grassroots activism and to provide a safe space for black birthing people to be able to return to for resources and additional help. So that’s the development of the question. When it comes to the third exam, I want it to be able to do this quantitative and qualitative analysis of medical records to inform what I’m seeing in a local hospital, but still working on IRB approval for that. So now it has shifted to different ways that black religious communities can actually support black wellness, and what life wellness actually looks like across the African diaspora in the US. So I am still formalizing that topic. But I think that it will be a great segue to get me to a great background that is to incorporate quantitative and qualitative analyses, and then conclude with these actionable items that communities can practice regularly to kind of put their money with them outside.


Seth Villegas 22:46
Yeah, definitely. And so there’s a lot of different ways we can go in this conversation. And I think that one of the first things that I’d really like to hear more about is what you were finding when you’re looking at these medical records. So for instance, I know you’ve talked about this little bit before, but when you’ve seen that these claims are getting denied, right, and then people you know, they say they need surgery, or they say that there’s something going wrong with their bodies. And it’s, you know, they’re being denied the insurance. And but there’s also this other aspect of, it’s not clear how seriously, you know, the medical practitioners involved, they’re kind of taking what they’re saying, right? Because they’re not being like, Oh, no, no, no, like, they really, really need this. And even in the kind of like, the really heart wrenching example that you gave, like, you have someone here who’s a doctor, right, like someone who should have at least some authority to speak about what’s happening, but I still kind of suffers from these complications that she mentioned beforehand. So I was wondering if you could just take us a little bit more through that about, like, what’s going on with that, like, what is happening there?


shaunesse’ jacobs 23:52
Yeah. Well, there are a number of theories about this. And my personal theory is that because us healthcare is so diagnostic, and not largely preventative, that’s where a lot of the readmissions kind of come in because our readmission rate is massive compared to other developed nations. And because the readmission rates are so high for any health care concern. Insurance companies are trying to find ways to kind of flag that so that these claims aren’t paid. So if you come back presenting to come into the hospital presenting with the same condition within 30 days, that’s like dating against the hospital that the insurance company will pay this claim. And when it comes to birthing people, with a lot of their concerns, it’s just a matter of what I saw in the medical records while working at this group was that the the trend was getting them stable for this particular moment, giving them a packet that talk about diet and how to kind of like monitor your blood pressure, especially if we’re thinking about the example of preeclampsia, and then sending them back home. But you haven’t really you if you haven’t treated the real issue, you’ve treated it in the moment. And so this is still a long lasting problem. And then when this long lasting problem elevates to a crisis, then we’re scrambling to treat the crisis in the moment. And we still haven’t solved the core problem. And so with some of these patients, you then see them being readmitted constantly for issues with high blood pressure during pregnancy, to then need to have an emergency c section, because there’s no way that they can make it full term and give a natural birth, which is also a harrowing experience, because you’re in crisis mode. And from crisis mode, that is just getting you stable in the moment, usually, after delivery, a birthing person is in the hospital, I think, on average, maybe two days, a day and a half, two days, maybe three days max, and then you go home. And so we still haven’t treated the underlying condition, we haven’t treated this long lasting problem, everything is in the moment. And I think that that plays a huge part in what I saw in the medical records, especially when it comes to needing to read vitals constantly to have the vital speak for why care was necessary for every readmit and why all the services rendered, were really important. But I think it also speaks to a larger issue that in our corporate healthcare structures, we don’t really include public health concerns and crises, when we’re thinking about payment skills. So preeclampsia is a almost like a public health crisis when we’re thinking about birthing communities of color. And yet, this is treated on an individual basis for every individual admin. And we’re not really targeting the many causes of why blood pressure, so prenatal blood pressure is so high. So that’s language that I’ve been able to learn as it’s being in the program, as I’ve kind of been engaged with more public health scholars and more clinicians who have been doing this work for a very long time. But that’s also the snippet that I gained from my time at the healthcare consulting company that made me want to probe a little bit more.


Seth Villegas 27:15
Yeah. And one of the other things that you mentioned is you were kind of able to follow up with some of this research during a is a summer fellowship that those years see back, right, if I remember correctly, or do you do that somewhere else?


shaunesse’ jacobs 27:26
Yes. And no. So I partnered with Dr. Wildman with CMAC. And we apply it through the Institute for Health Systems innovation and policy through Boston University. And so with that the work was centered on receiving medical records are going through the IRB process, receiving medical records and actually being able to analyze them on this qualitative level. So we were, we just wanted to snip it, because I think there if I remember the statistics correctly over one year period, I think they’re about almost 3000 births that happened at Boston Medical Center. And so we’re partnering with them to see, you know, like how we could get the records just to get a small snapshot, we wanted them racially and ethnically diverse. This is all this all would be self reported. And we were going to literally look at the medical narrative. And so any notes that any clinician wrote over the course of this patient’s prenatal care. And so we were looking at a span of about 18 months to two years, depending on when they admitted so we can get the full length of prenatal care, the delivery and a little bit of postop. Because there there’s a wonderful professor in the School of Public Health, Dr. Eugene Declercq, who does a lot of advocacy, around deaths around cancer related complications, and just bettering the experiences of our pregnant birthing people. And so she does give a lot of information online about the statistics for when a birthing person is more likely to die, whether it is during pregnancy, the 42 days after birth, or within a year after birth. And so those statistics also played a part in the trends we’re looking for in follow up here and post op care if an emergency C-section needed to take place versus a natural birth actually occurring. Yeah, that’s, that’s some of the things we’re looking at.


Seth Villegas 29:17
Yeah, I think just to explain a little bit for people who aren’t as familiar with academia that the IRB is the institutional review board and basically is it’s a I’m not even sure how many people are actually on the board itself. But basically, it’s a collection of professors who gets together and anytime you involve human subjects or really sensitive data. So like medical records, in this case, they’re basically going to be looking at is there anything that’s dangerous about this that hasn’t been accounted for? And basically, how can you mitigate those things, protect people’s privacy and whatnot, and kind of have a plan to get rid of things. But not only that, but BMC the Boston Medical Center is attached to Boston University. And so there’s an institutional connection there that that makes this kind of hybrid approach even possible. And I think that those things are kind of important to understand because it’s, it’s actually really cool that you get to do something like this. And it’s really unusual as well, right? So you kind of have the focus that you have, but then to you to be integrating both public health, theology, religion, it’s a really different way of tackling this problem, then I’m sure that they even do at BMC outside.


shaunesse’ jacobs 30:23
Yes, it’s very true. So, like leading up to this summer fellowship, I think I took at least one class a semester at the School of Public Health. Because while my background is in bioethics still having that public health engagement was really crucial for me to be able to also do public health ethics. And I met a phenomenal professor there, Dr. Michael groden, who is a bioethicist and Sai colleges, I never remember the difference. He’s either psychiatrists or psychologists, but he teaches at the School of Public Health. He also teaches in the religion department at BU, and he works at Boston Medical Center. And we develop a great relationship interest in terms of engaging with theology and bioethics. And that kind of helped me submit my relationship within the School of Public Health a lot more of than as I started solidifying, the reality that I wanted to work in the world of birth and crises for communities of color. Dr. Lois McCloskey was another professor that I was able to partner with, if she put me in contact with this organization, its Health Resources in Action, but they’re a nonprofit in the Boston area. And they were working on a research agenda, to figure out how to engage people from all backgrounds, whether you are a scholar and activist or grassroots worker, to essentially be an advocate and a champion for birthing equality, and equity. And so I’ve been working with them for the past year on this development of this research agenda. And in all of the spaces that I’m in, whether it’s the School of Public Health, whether it’s Boston Medical Center, or this research agenda development group, I am the only person from a religion background, who is who’s involved in these conversations. And if anything, people are chaplains, who are kind of like allies on the margins, because they have to do so much for all sorts of health crises. And so it’s fascinating to be in this space, I am so grateful that the School of Theology and the School of Public Health have a relationship that allows me to be able to sit between the two, that Dr. Wildman and Dr. Rambo have been so encouraging of me being involved as much as possible. And Dr. Wildman was even the one who told me about the summer fellowship and helped me apply for it, because he needed an advisor to do that. And so being able to work even more closely with him, to engage in these communities who are doing work bigger than we even knew about, I’ve been able to develop some amazing partnerships, and learn about other opportunities and get involved on the ground in the Boston area in a way that I would not have just being in the School of Theology. And it’s also been great to see master students who are more excited to take courses over there, knowing that this partnership is possible. But I think the downside to it is having to fight even harder for my voice to be heard at the table and taken seriously. Because when people see theology, they’re like, Oh, you know, why are you here? And I kind of have to prove myself that I know the language, you know, I know the principles, I know how I can be involved, and that I do bring an important perspective. And so once I kind of prove myself, then then we’re good. But it takes a little bit of time.


Seth Villegas 33:33
Right, definitely. And I think this is worth talking about more, in part because I think there’s a lots of misunderstandings about the ways in which religion plays a part in particular communities. So I was wondering if you could just talk a little bit more about how is it that religion is actually kind of a boon in these circumstances in terms of because you know, the way that you’ve talked about this has actually been kind of interesting, because you haven’t said, okay, we need to make sure the insurance companies do X, Y, or Z, but rather that there’s a way to kind of catalyze the the black church right and black religious communities to actually help with this particular problem.


shaunesse’ jacobs 34:13
Yeah, you’re absolutely right. So in my time working with the healthcare consulting company, that’s when I first realized how big the problem was with in healthcare and the way that healthcare is structured, because you have so many corporate hands in the conversation, especially when you’re thinking about contracts between insurance companies and hospitals and just it gets really murky really quickly. And because I do not care to get an MBA, and I didn’t see myself necessarily doing healthcare administration. I wanted to turn to where my strengths were, and my strengths have always been over the past years seeing a connection between religion and medicine, yet to put it very rarely religion and medicine. And so as I’ve gotten more We’re involved in a lot of the grassroots work that’s happening. What I see is that religious representatives are mad at the table. And that’s problematic. And that’s not to say that universally, there’s no religious representative at the table. But more often than not, people at the table are listing their jobs, their nonprofits, their activist organizations first, and then they happen to be religious. And this is even for a lot of the black women who are doing this work across the country. And if that’s the case, it’s almost as if religious organizations are getting credit for work that they’re not doing. And that’s kind of problematic for me. So, for me, that’s where I really wanted to kind of center how I could be involved in this work within also understanding that regardless of what the leading identifiers were, for people at the table, religion always was a part of the conversation, whether they are thanking God that their loved one made it through a birthing crisis, whether they got in prayer group together, and it was doctors who were collectively meeting every week to pray for their patients, whether it was going to churches and trying to present information to let them know what’s happening and what the work is that’s being done. Religion was being talked about. So the fact that it is talked about but not primarily engaged, for me was why it was important to figure out how to get them at the proverbial table.


Seth Villegas 36:33
Yeah, and I think my kind of seminary background is Fuller, and they actually have a really big chaplaincy program there. And the chaplains that I talked to there is what kind of take pride in being able to really talk to people in those moments of crisis, kind of, regardless of their faith background. But also, I think, especially when people are having a medical crisis, you know, when you’re facing kind of your mortality, and whatnot, it like turning to that as kind of a familiar language, even if it’s something that’s potentially dropped off, I think, is fairly, fairly common, or at least it’s a little more common than I think is giving credit for. You mentioned earlier that the medical industry is very diagnostic, right, it’s just trying to think of, you know, you have, you know, x problem, right, which has y solution, or, you know, something like that. But, you know, there’s this whole kind of emotional experience that goes on with this, especially, you know, the stuff they were talking about earlier, where, you know, maybe they’re more inherent risks, maybe your problem is not being dealt with and that can seems really harrowing.


shaunesse’ jacobs 37:37
Absolutely. And I think you’re absolutely right to bring up the example of chaplaincy, because chaplains are on the frontlines in many ways, creating space, where patients feel as though there is no space for them to be able to articulate these concerns. Because one of the things that we learn, it’s kind of like the beginning of our bioethics curriculum is what it looks like to try to create a space for patients to feel and actually be autonomous and not feel as though they are in this parent child relationship with their providers. And with communities of color. There are a number of studies that have documented that when an authority figures in the space especially if you feel as though you are not qualified to speak to issues you do defer to that parent child dynamic. And that plays a large part in communities of color, not knowing how to advocate for themselves as listening to a talk. The other day, there’s a wonderful medical student at Harvard, Alicia Nolan, who’s doing work with Reverend Dr. Gloria White-Hammond to kind of be engaged with communities and Roxbury. She’s listening to patients talk. And for many of the black women that were interviewed, one of the things they repeated was, when I talked to my doctor, I tell them, you know, you’re not, you’re not listening to me. And then for my next woman, saying, When I talk to my doctor, I tell them, you’re not understanding me. So even those two phenomenon of not being understood, or not being listened to. That’s where chaplains fill the void. And they actually listen, and they are able to take notes and advocate for patients in a way that healthcare Coalition’s aren’t seeing. And I think that that is a role that religion plays writ large, like we have the skills to see connections that need to be made that others in different specialized fields probably don’t have the skill set to see. We’re able to bring conversations up that are really important to advocate for personhood, and humanity and wholeness and wellness in ways that other specialists aren’t trained to do. And just being able to have that kind of critical lens is really important for me, and, and being involved. And I’m so grateful for the many chaplains that I’ve gotten to work with, who are always in conversation with me about how difficult it gets to do this work. Because again, there’s still that dynamic of unless you’re at a really great Hospital of having to prove that your skill set is necessary yourself. skill set is worth it in your skill set is valuable to have at the table. And many athletes often fight for that voice to be included, even though they have this very unique skill set that really does save people’s lives. And that’s important for many communities across the country, regardless of how we’re viewing religion and dying.


Seth Villegas 40:19
We’re kind of getting to the the end of our time here, and I focus a lot on, you know, data digitality. And these kinds of other sorts of questions. And so what I’m hearing you describe, you know, giving a more holistic approach, kind of the integration of qualitative data, which is, you know, basically just talking to people trying to find patterns and whatnot, actually seems to be kind of counter to the bigger trend that I’ve sort of been seen in the medical industry, which is towards extreme quantitative measures that go beyond even what a doctor sees, right? And a kind of almost a distrust of human practitioners to be a treat other humans. And so I was wondering, you, you kind of, I think, a unique angle on this. So when you see this sort of trend would like, what’s your kind of reaction to it?


shaunesse’ jacobs 41:08
Yeah, you’re at first off, you’re absolutely right. That is the trend that’s happening. I think it’s been happening for a very long time. And I, I don’t necessarily let it faze me that much, just because I personally believe that for all of us doing qualitative research, especially qualitative research in healthcare institutions, we are providing one of the most valuable perspectives because this is one of the few spaces where patient voice gets to be centered. And we I think, in our current COVID climate, we’re realizing that we have excluded patient voice for so long. And now we’re scrambling to find ways to make patients feel seen and hold when there’s been centuries of medical mistrust that has developed because we did not send her patient voice. And so that is, I mean, that doesn’t mean that a shift is going to happen. And people are all of a sudden going to see that qualitative research is valuable when it comes to, to healthcare institutions. But what it does mean is that this is still a relevant and necessary conversation that needs to be had. And there will be people who benefit from the work that we’re doing, regardless of where the trend is going.


Seth Villegas 42:12
Yeah, I think I don’t know if we’ve really brought this up as much. But I think medical distress is a really big part of both, I think the move towards more increased quantitative measures, both on the patient side, you know, people kind of demanding something else besides what they’re being provided? Yes. But also on the side of, if I go to see my doctor, are they really going to help me? So I actually, when I was in high school, I broken a bone in my foot. And I was there, you know, it’s telling the doctor that, you know, if it hurts, you know, I don’t know why it hurts. And, you know, it’s been hurting for over a month. And it my dad actually refused to leave until the doctor agreed to get an x-ray. And that took and that was, I didn’t want him to do that. I was actually really embarrassed that you’re spending like 2030 minutes writing the doctor like, No, no, this is actually a big problem, you need to do something. It’s not just tight shoes, right? It’s, there’s a serious problem here. And then, you know, when they did take the extra, they’re like, oh, there is a stress fracture here. But part of that was, you know, we we didn’t see that doctor anymore, right? My dad was just like, no, we’re not, you didn’t take us very seriously. He said there was a problem. And there actually was a problem. So right. You know, that’s, that’s the end of our relationship, basically. 


shaunesse’ jacobs 43:26
I think that that is a very common trend for any community that has historically, socially and culturally not been listened to, regardless of what the identifiers are. And I think that one of the things that I am saying is that with the continued increase of nurse practitioners, that and family nurse practitioners, that’s changing a little bit just because I feel that nurses have a little bit of a different approach to care than doctors do. And so these spaces where people feel as though they can get more personalized, sincere care, is what allows them to establish a bit more trust within the medical system. But it also is a lot of trial and error until you find that right provider and for you to say, Okay, now I feel safe. Now, I feel seen. And now I feel heard. And I think we’re going to it’s going to take a quite a bit of time, until we find that balance of understanding that this is what patients need. And this is what’s most important.


Seth Villegas 44:19
So I think, kind of to end, if if we could, you know, fund whatever your vision is, like, like what what kind of project would you want us to undertake? If you can set up you know, it could just be you could be a team, but if we could really set you up on your dream, your public health, theology religion project, what would that be?


shaunesse’ jacobs 44:41
Well, always a team. I am a collaborative worker. I can’t do this by myself. But I would say it’s really the question I think I would want to project that brings in scholars, thinkers, activists from diverse backgrounds, so healthcare clinicians, ground workers, scholars across religion and public health, who are able to create space to actually listen to what patients are saying. So whether it is listening to like patient listening sessions, to have their ear to the ground to understand what patients are seeing in healthcare settings, and then also interviewing clinicians to understand how clinicians are seeing healthcare operate. And of course, this would be very specific to birthing communities. And then from there developing some kind of actionable item, whether it is some kind of training and definitely a new education program for medical students to be trained differently when they’re engaging with patients, because a lot of what I have learned over the years is that medical students often have to take like either one day of an ethics course, or a maybe a semester, but is very small in their in their education. And so to actually develop a new curriculum to train future clinicians differently, so that patient’s voice has centered is what my ideal project would be, and for birthing people to be at the fore of these listening sessions and for clinicians who treat birthing people to be at the fore and for them to finally listen to one another to see where the disconnects are. And for us to address those immediately.


Seth Villegas 46:08
Right. I mean, I think that sounds like a really great project. I don’t know if any funders are going to be listening, but I hope they’ll keep this in mind as as we move forward. So thank you so much. shaunesse’ it’s been really great to hear about your research view and I really hope we can have a follow up conversation as your research continues to develop.


shaunesse’ jacobs 46:26
Sounds great, thank you.


Seth Villegas 46:31
Thank you for listening to this conversation with shaunesse’ jacobs. You can find more information about DIGETHIX on our website did jetix.org and more information about our sponsoring organization, the Center for Mind and Culture at mindandculture.org. If you’d like to respond to this episode, you can email us at digethix@mindandculture.org or you can find us on social media at DIGETHIX. You can also find this information in the description for this episode. In this episode, we covered the complex topic of black maternal mentality we talked about she needs is on the ground research at Boston Medical Center in the greater scope the problem that may still need to be uncovered in order to address discrepancies in health care, and may be necessary to enlarge our scope of the problem. As shaunesse’ explains, the African American churches may have a key role to play in building trust in health care. If we are to enlarge this problem to speak about more than just issues of digital ethics. In general, the most obvious one is the inadequacy of purely quantitative approaches to understand your complex problem. In this case, the kind of data being gathered failed to capture the actual condition of the African American patients in question. This is not to say that quantitative data is not incredibly useful, but that any data is only useful insofar as actually accurate in order to figure out if that information is accurate or not. Qualitative approaches, such as those undertaken by shinies can be helpful and illuminated what might actually be going on. And if the data is at all distorted. This question of data and how it relates to health care will be taken up again next week, as we continue our examination of racing health care. I hope to hear from you before our next conversation. This is Seth, signing off.


Transcribed by https://otter.ai