Subscribe
Share
Share
Embed
Join us as we dive deeper into the rising severe maternal morbidity and maternal mortality rates in the United States through a data-driven, quality improvement lens. Each episode will foster discussion with those committed to improving maternal health outcomes and saving lives.
Christie - 00:00:05:
Welcome to AIM For Safer Birth. I'm your host, Christie Allen, Senior Director of Quality Improvement and Programs at the American College of Obstetricians and Gynecologists, or ACOG. On this podcast, we dive deeper into the rising severe maternal morbidity and maternal mortality rates in the United States through a data-driven quality improvement lens. In this season, I'm talking with Maternal health innovators about charting a course for high quality maternity care. And I'm excited to talk with Dr. Nichole Nidey and Michelle Kavouras in this episode. Dr. Nichole Nidey is a maternal and child health epidemiologist whose work centers on improving the health and life outcomes of underserved families. Her research explores the intergenerational effects of maternal adverse childhood events, perinatal mental health, and substance use with the goal of developing interventions to mitigate these impacts. Dr. Nidey is also an assistant professor at the University of Iowa College of Public Health. Michelle Kavouras is based in Sitka, Alaska and Michelle will circle back and you can correct me if I said that wrong and brings a diverse background to her work in substance use and harm reduction. As a peer doula in Chicago, Michelle provided compassionate support to pregnant individuals with substance use disorder, emphasizing harm reduction principles. She now leads programs and advocates for access to evidence-based care, solidifying her as a respected leader in harm reduction. And thank you both so much for joining me today. Maybe starting out with Michelle, if you want to talk a little bit about why I'm talking to you today and making sure I pronounced your home base correctly.
Michelle - 00:01:33:
Yes, it's Sitka, Alaska. Thank you. Thank you for having us both here. I think any discussion around Maternal health is important, especially when we talk about people with either substance use disorder or that just use substances. And I think to clarify, You know, it's not always a disorder. Thanks for having us.
Christie - 00:01:59:
And then Nichole, I kind of touched on the work that you've done and working with Michelle as well. I believe you guys are colleagues and I'm so glad to be able to meet you together. Do you want to talk a little bit about your work and sort of why we're talking today?
Nichole - 00:02:14:
Sure. Yes. And first off, thank you for having us. We're really excited to talk to you today. I think the reason why most people are interested in the work that I do is related to the patient engagement. And so in 2019, I started the Empower project, which is a collaborative of a lot of folks, but most importantly, it includes 20 individuals who use drugs during pregnancy. And so we have been working together since 2019 to really improve the research questions that we're asking to lead to better care.
Christie - 00:02:47:
That's amazing. Yeah, again, thank you both for being here. I think, Michelle, you raise a good point that I want to start off with, which is words matter. We say that a lot as we talk through this podcast. And I've been watching sort of an evolution of folks who listen to this podcast know I've been a nurse for 26 years. And a lot of my work has been with folks that do use substances or with substance-exposed newborns. And I'm really passionate about the work. And I've watched the evolution of speech over time. And one of the things that I'm noticing more and more is the delineation of how we talk about this. We started, I would say, very, very behind using really stigmatizing terms. And I think that as a profession, clinical health care providers have gotten better at it. We know that it's not an addicted newborn. We know that addiction is very different than substance exposure. There are some basic pieces that we talk about quite a bit in both AIM and in other work that ACOG does. And what I'm hearing more and more, and isn't always reflected in the older, I say older, it can even just be a few years, because language changes. What I hear often is substance use disorder. And I want to clarify that we understand that there are substance use conditions, there are disorders, and then there's use. And those are very... Different things. Does either of you want to talk a little bit about why we clarify those pieces for our listeners?
Michelle - 00:04:11:
Yeah, sure. So I think when I talk about recovery and in any context about myself, for me, that could mean abstinence based, but there are so many pathways to recovery. And not all people are on a path to recovery because they don't identify as having. An issue with substance use. They might just be using substances for the human factor of it makes us feel good. So I think for anybody to assume just because somebody has substances in their system that they have a substance use disorder is not fair and it's not helpful and it also deters people from. Asking more questions and understanding more because they're already labeled. Which is harmful.
Christie - 00:04:59:
That's incredibly helpful. I think one of the pieces that I also hear a lot from the broader community trying to do work at providing better care in this space. In a clinical setting. It can also be around the changing policies, different structures, the way that different substances are recognized state to state. I'm not going to go down that today. That rabbit hole feels a little too much for a podcast, and we couldn't get there with any specificity. I do know, though, that one consistent gap I feel like at our resources at AIM and a little bit everywhere in my mind is how do we most effectively work in quality improvement with people that have lived expertise of substance use? This can be a difficult topic for people. People come to the table with preconceived notions, their own biases through their own lived experience, even as clinicians, as substance users themselves, people in recovery themselves. There's a lot of layers to this. Nichole, can you tell me a little bit about why you think there's this complexity, particularly like we work with folks that have had hypertensive disorders of pregnancy. We work with folks who had hemorrhages. Why does this feel so complicated to our QI brains?
Nichole - 00:06:15:
Yeah. So I think, first of all, it's the preconceived notions that our communities have about people who use drugs. We think and we call them populations that are hard to reach. And that is a term that I really hate. And I think it is almost, I don't know if lazy is the right word, but I think it puts the responsibility on the people themselves. It's their fault they're hard to reach. And so historically, when I've applied for grants to include people with lived expertise, I have been told, this sounds really great, but they are not going to show up. They're not going to take this seriously. If you give them a laptop, they're going to sell it for drugs. It's all of these things. And so I feel like that idea is indoctrinated within a lot of people that we just can't touch this group of people. Whereas I think what the truth is, is us as clinicians, academics, policymakers, we haven't figured out how to reach them. And I think the problem is with us. And so that's something that I've really tried to do a lot in the Empower project is to figure out how to do work with this amazing group of women. They are the smartest women I know. And I always tell everybody I learned more from them than my entire PhD. And so I think it goes all the way back to stigma. I'm going to say today, probably a hundred times that the root cause is stigma.
Michelle - 00:07:42:
I think it goes even deeper into fear. I think the fear of the unknown. When you think about a pregnant person using drugs, that's a scary initial thought for folks because outcomes and the risks. So, people tend to shy away from even addressing it, which makes it more isolating for the pregnant people or parents. And I think calling people in to have conversations to understand why they might be using language that is not inviting for somebody who would benefit, including their babies, benefit from getting the health care that they deserve. I think, I try to do that even in, I'm part of the Alcohol Alliance in Alaska, and we're trying to change the word misuse to just use. And there's some pushback because history has been misuse or abuse. Like we've come a long way from the word substance abuse. And I feel personally as a person who's lived through substance use while pregnant, having a baby being, ostracized for my actions, from living through that and then watching patients that I worked with who had substance use. In their history or current. Still be treated the same way I was 15 years ago. It's hard to watch, but it's also a teaching moment where in those instances, if it's safe, I would call them in to have a conversation to find out why. Why they're talking the way they're talking or why they believe what they believe. And to expand that to. Our goal is to make sure the baby's healthy and we have to make sure that we're looking at the person that's carrying that baby and offering them all the services that they deserve. The same ones that we offer to anybody else in order to make sure that that we're hitting those goals of having a healthy outcome for everyone.
Nichole - 00:09:50:
Christie, can I add something about language really quick? I think, so I think about language a lot. I spend a lot of time reading clinical notes to see how people who are pregnant and using drugs at the same time are spoken about. And something that I learned, and this is why it's so important to have people with lived expertise in anything you do, is that there's not a lot of agreement on what the replacement language is. And so we have all of these language guides that tell us, don't say, you know, substance abuse, say substance use. Don't say drug addicts, say substance use disorder. The list goes on and on. And one of... Many of the favorite things that I heard amongst the Empower Moms in a meeting about a year ago was... Who got to choose the words that we say now? And so I looked and I went back and I couldn't really find a lot of great evidence on where those words came from and who said that these are the appropriate words. And so in a research study that Michelle is involved in where she helped design the survey and the questions and interpreting the data, we realized that there's not a one size fits all approach. And I think. What I kind of wrap my head around a little bit over the weekend, looking at some of the qualitative data, is people with substance use keep saying, quit giving me a cookie cutter approach. The same treatment plan doesn't work for everybody. And then I'm afraid right now what we're doing with the language is we're doing that same mistake. We're doing this cookie cutter approach. So I just want to bring that out there that we really do need to better understand how people who use drugs. Want to be referred as. Not what I guess the academic minds are telling us are appropriate.
Christie - 00:11:39:
So I'm listening to both of you as you talk about this incredibly complex. Situation, if you will, of how we see things, how we talk about things, how people feel about them, how we treat people ultimately. And what's interesting is even as we're talking about it, there is an element of them. And us. Those lines are not the same, Michelle, as you share for you, but they likely aren't for anybody listening to this. I think most of us at this point in our lives have been impacted in some way with substances, whether it's ourselves, someone we love. I think there's assumptions made often in health care in particular that like health care providers don't use drugs or health care family members would never. And we've all seen evidence to the contrary. I think we would be incredibly naive to pretend otherwise. And that's one piece of it. And then I think the next is we because of that othering and you both feel free to correct me when I'm done with this theory. But this is something I've observed over time is that because of that othering, there is this. Inclination, if you will, to talk about this in a homogenous, correct way. Again, with my air quotes, I'm big on those which are hard for podcasts. There's this like right or wrong versus meeting people where they're at and providing high quality care. We say over and over as we talk about quality improvement that the goal of high quality and optimal care is not to provide the same care for everyone. It's to provide the same high quality care and meeting people where they're at. And I can't think of a population that that is any more important for than folks that are using substances or drugs in pregnancy. And I have some history of working with this population myself and choosing to as a NICU nurse and wanting to help Empower these parents to parent in those settings when they're able. I've said this before, I'll say it again. They don't love their babies differently than I love mine. And I think that as clinical people at the bedside, Nichole, to your point, reading notes. Reading this, we're trying to do it right and not always hitting that mark and not really having those tools. No one told me how to chart in a non-biased way about substance use ever as a nurse. Do either of you have input on how we can help correct, whether it's the narrative, but also the documentation in clinical health care that I think does feed some of this othering?
Nichole - 00:14:13:
Yeah, and so I think There's all, I bet both Michelle and I can probably talk the whole podcast about this. But I think you have to look at it in different domains. And so oftentimes right now you see all these interventions directed at healthcare providers and their one-on-one patient care. Don't say drug addicts, say this, that sort of thing. But when I was reading the notes this past summer, what I realized is many of the inappropriate words being used are not the provider's personal language. It is the template language in EHR. And so the first thing is, is really taking a systems level approach to changing those smart phrases and auditing that to ensure that you're using appropriate language. The next piece is to ensure that you know how your patient wants to be referred to. I think in a lot of situations, not just with pregnant people as substance use, but just in general, it's often really like parental, right? Like we know better than you. This needs to be done this way. And I feel like that's how those language guides have been developed is we decided this is how you should be referred to as. And I think we really need to start with patients and say, how do you want us to refer to you? Kind of like pronouns, right? Like it's really impactful. What words mean something to you? And then as we know, more and more people are reading their health care notes. And a lot of patients can't differentiate between, oh, this is template language. My provider didn't say this versus their own, is to have that education piece and saying, if you read your notes because of the way the diagnosis code reads, I can't change this. And having that transparent conversation, because I think the notes can be really damaging for patients and they're not going to want to come back based on how they're written about.
Michelle - 00:15:59:
Two, yes. I want to add two. Probably the most important thing that Nichole's talking about is listening to the patient. And asking for clarification of certain things. For instance, my doctor, has noted on my chart that I have opiate addiction. And I'm like, I've been in recovery for over eight years. Can we please remove that? And I've asked multiple times for that to happen. And it's gone falling on deaf ears, which is frustrating as a person who advocates for change in language. And people's rights and stop creating more barriers for the people that we're actually trying to help. It's frustrating living through that. I can only imagine people that don't know what's out there and how damaging it is in their future, whether it's maintaining intact with their family, having a baby and having that on your record. Is scary. And also, I think incorporating best practices when it comes to child protective workers is important as well, and having plans of safe care set up or collaborating with them. And I know that's not a popular answer in a lot of places, but it's also a popular answer in a lot of places. I've done some work where I see some great systems where child protective service workers also incorporate. Recovery coaches in their work. To have that lived experience and living experience in those spaces. Which is helpful for them to direct them in the best practices for folks.
Christie - 00:17:43:
So I want to circle back to that piece in particular in just a minute, Michelle, about who we're engaging with in the community to support patients and meeting them where they're at. In no other part of perinatal care, in my mind, is that more diverse, important, and complicated sometimes. I want to circle back, though, because I was kind of laughing as you were saying what your turd said, not because it says that, but because of the frustration associated. I smoked 20 years ago. 20 years ago, I was an avid smoker, big fan, very much addicted to nicotine, very much enjoyed it. I only quit because I found out that I was pregnant and knew I had to, especially because I was a nurse and shouldn't have been in the first place. It was really hard. It was one of the hardest things I ever did. And it was one of the hardest things I ever did, even though I was pregnant and knew it could harm the fetus, who is now 19 and a junior in college. All of those pieces, though, still show up on my chart. And every time I go into a primary care appointment, I'm asked how I feel about quitting smoking. I have not touched a cigarette since. Maybe 2002. And it will always be on my chart. It's never going away. So I think it's interesting, Nichole, sharing about the template. I understand why history and diagnosis codes and those things are on our EMRs, why they're important. I also know that some attention to that. I know our healthcare providers are very busy, that the clinicians seeing patients have such limited time to do the things, but I've never appreciated more someone cleaning up my health record than when I've looked at it and been like, oh, they took that off. Thank goodness, because it wasn't correct. Again, we're humans and EMRs don't negate human error or EHRs, depending on your terminology. But Nichole, the idea of editing smart phrases, I think one of the things we do in bundles quite a bit as we're implementing quality improvement is we go in and we do order sets and we do standing orders and we do, and those are game changers, as our quality improvement folks listening could tell you. I don't know that I've ever thought about going in and doing our own audit for the stigmatizing language that is in smart phrases. Or is in other elements of an EMR. That's a really great. Starting point for QI.
Nichole - 00:20:00:
Yeah. And can I add to that too, and it's not just mom's record, it's the baby's EMR too. And so in this language study. Many times we asked people, one of the questions was, tell me about a time that negatively affected you based on the language your health provider used. We didn't even ask about the charts. It wasn't in the question, but many people wrote and said, after my baby was born and I read their chart, it said drug exposed newborn. And a lot of these people who answered this question said, I was taking methadone or buprenorphine the whole time. I wasn't using any illegal drugs. I was using a prescription medication. I was doing everything I was supposed to do. But still, every time my child now goes into pediatric care, it says, and somebody's going to assume that I was using drugs during pregnancy. That's another thing that needs to change within the charts because we don't say drug-exposed newborns. Like I took antidepressants during pregnancy. My children's charts do not say drug-exposed newborn, but they are, right? I mean, I was taking a medication. And so I really think we need to take a hard look at our standard practices and where the stigma is deeply baked in.
Michelle - 00:21:18:
I think also, I think that a lot of systems are starting to look at the language. For instance, I'm part of the NADAC's National Credentialing Commission. For addiction professionals, and we are actually going through all the language in the test. And seeing how stigmatizing that is for our future addiction professions or current or long practicing. And I think it's a long time coming. I think this should have been a long time ago, but I'm happy that we're doing it now. Because it is important what we continue to put out there. And if we're asking questions that have stigmatizing language in it to attest to get your credentials and further your education, then we're really doing a disservice to all the hard work that we do every day in trying to change the narrative around the language of people who use drugs.
Christie - 00:22:12:
I appreciate that. We don't want to be undermining the work we're doing from the clinicians from the get-go, right? That seems, as you discuss it, so self-evident. But again, as we talk about in this podcast and in different elements of improving systems and quality and those different pieces that come together, it's often not the complex thing. It's the thing that most of us assume are happening anyway. Well, language evolved, so the test evolved. Well, they don't do that magically and spontaneously. We have to take action to do that. And I think you really highlight the need to be responsive and to be... Aware as we approach these things of the impacts that things have. I want to turn now to something you mentioned a little earlier, Michelle, and it's a difficult topic. I have interfaced in various capacities professionally with child protective services or Departments of Children and Family Services. They have different names in different states, just to call that out for folks that might not be aware. And these are agencies at the state level that ideally are Child Protective is the title. And they are there as people have... A lot of thoughts and feelings, and they are part of a system and a structure that is incredibly complex and can, as most structures, can cause harm. They can also be, as you described, innovative and a tool that helps meet folks. I know that a lot of clinical folks struggle with these pieces as mandated reporters, and I know that it can be a barrier at times when trying to care for families that are experiencing complexity around substance use or different pieces where things are not okay, right? I don't know, Michelle, if you want to talk about that a little or lead with that. And then, Nichole, I'd also love to talk about how we work with folks in those situations in a really respectful way. Person-centered way, if you both could touch on that.
Michelle - 00:24:12:
There's updated information all the time. And I think when people who have worked in the health care system don't. Educate themselves on the newest things, such as if when how just released or kept on just released a new guideline for health care providers to follow in February of 2024. This. Highlights a lot of changes to the typical mandated reporting requirements of healthcare providers. So for instance, if a person in some states, and it's broken down state by state, so if somebody in some states are using marijuana, for instance. There is no requirement to make a call. There always has been any substance, whether it's methadone, suboxone. I always believe that doctors have to make that call no matter what. Well, that's not true according to the CAPTA requirements. And that's the Child Abuse Prevention Treatment Act. Which was created in the 70s and now has continuously been updated. And I think if we're not teaching our health care providers to be current on those things, it can be harmful. Because there's a reason that they're changing them, because they're finding that that doesn't constitute child abuse. And I think it's really important to implement that, call people in to have those conversations. Sometimes it's not even up to the state laws, but up to the hospital. Or wherever the baby might be born. We're up whatever their guidelines are and goals. So I think incorporating that and understanding that, especially with upcoming administration, I think it's really important for us to know what the rights are if we are advocating for people so that we can Empower them with that information so that they can make. Evidence-based and appropriate choices for themselves and their families.
Christie - 00:26:16:
I want to give you a moment to speak to this too, Nichole. But I think, again, I'm hearing it. So as I listen to you, Michelle, I'm trying to glean tidbits that are so important as we're trying to drive change nationally, because we know there's inconsistencies and that lots of folks are doing this work and really committed to it. We will link out to the updated CAPTA guidelines where we post this podcast so folks can look at them themselves. I think it goes back to a lot of what we already talk about in quality improvement and AIM. We need to do education for providers. We need to make sure our policies are up to date. And I have worked at different facilities and that's a big lift already with hemorrhage and clinical updates, with hypertension and clinical updates, with sepsis and clinical updates. And I think at times this... Doesn't always fit into the policy updates in the same way. So I really appreciate you highlighting. The need for currency in this as part of our clinical practice, as well as in the EMR and in other places. Sorry, Nichole, please, your thoughts.
Nichole - 00:27:21:
Yeah, no, I'll add on to that. And I think I learned so much about the child protective system from Michelle, because she is definitely an expert in this space. So I don't think I could say anything better than her. But I will add on something from more of like the healthcare side, as I have talked to healthcare providers and asked, did you ever receive any training of how you should talk to child protective services? What you have to tell them. And so I had one provider tell me, um, that when some of her colleagues of child protective services or some other entity ask for that patient's notes, they give all of the notes, like 10 years worth of notes to child protective services. Because I don't know any better. Whereas you can be empowered as a healthcare provider to go back and say, sure, I'm happy to help you with that. Exactly what type of note do you need? What date do you need? Because once you give them all 10 years, they will use all 10 years of whatever is in there against that person. And so in terms of, go ahead.
Christie - 00:28:26:
I also want to say that getting 10 years of anyone's healthcare record means that you're not going to have the ability to look at where the current state is. Which is what I know is being assessed, hopefully, as we approach working with families.
Nichole - 00:28:41:
100%. Yep. But when I've talked to providers and patients, the way in which they're assessed, either through their notes or when they're presenting right after delivery, one provider said to me one time, the outcome is as random as a Monday or a Tuesday. It really is not the patient that matters. It's the person making the choice. And I think that's a human rights issue. There should be more transparency and consistency in what we do, especially as it relates to breaking families apart. But back to that provider training, I feel like hospitals should be required to ensure that their staff know what they can share out. We get a ton of HIPAA training. In different spaces, but I don't think I've ever seen anything that's like HIPAA training related to when an outside entity is mandating you release records. And I think that's really important.
Christie - 00:29:35:
And we're not going to go fully there with this, but I want to also share that I worked as a nurse clinically at the bedside for about 20 years and didn't know about CFR and different regulations that come into effect outside of HIPAA in a different way with caring for people in the settings of substance use and addiction medicine. And that's not our wheelhouse here, but I want to encourage my colleagues at the bedside to be aware that it's not the same levels of disclosure and confidentiality. And there's a lot of complexity here. So let's learn from experts.
Michelle - 00:30:09:
Can I add to that note also is the importance of not just at the bedside, but from the moment the person walks in the front door. To the HR department who does the trainings, I worked in a hospital on the west side of Chicago for three years as a recovery doula. My first training for onboarding was through HR. And one of the things that they said. Is if you're in doubt, call child protective services. And I was like, hold on, please. We work with predominantly Black community. If we are randomly calling DCFS Child Protective Services because we aren't sure about something, we're really creating more risk and harm for that family. An unnecessary level. And so educating everybody across the board. And when I said that, the person that was training was like, oh. You're right. We should change that. And it can be as simple as that. Clearing people in to understand why are you saying these things? And are you thinking about the full scope of the work that we're doing? In the hospital. In the clinic. So it was. Moments like that where you... You can say that. And I don't know if it went and changed. Like I would ask new people that came on board, hey, when you went through the training, did they tell you when in doubt? And they're like, I don't know. It was a four day training. I kind of wasn't paying attention. And I'm like. So I don't know if it ever changed, but I hope it did. And that's where... You know, we can educate the health care providers, but the person at the front desk is usually the first person to see the person that we are concerned with getting called. I think it's important.
Christie - 00:31:57:
So intentionality through education and awareness and making sure we're current, right? That's what that sounds like. And to your point too, Michelle, I think I talk about the bedside because that's where a lot of our folks doing quality improvement are coming from. I recognize that substance use disorder bundle, which I'm going to use the term the bundle is named right now, which was actually an expansion because initially it was very focused on opioids and opiates. And we recognize that things were a little broader than that for many folks and got feedback from the community. But I think that there is an inclination to educate clinicians or social workers. I was often told it's the social workers. You just let them know and they'll take care of it. So I was not educated in that way. And if I, who's physically touching, handling, supporting the families was not told that I can promise. That to your point, folks in administration and in other spaces also weren't being trained in the best practices that you're describing. Part of why I was so interested to talk to both of you was to talk about engagement and representation in this work. We have, as a discipline in maternal child health, I think made strides into integrating people with lived expertise. I would say that we are behind that in folks that use drugs during pregnancy or have a history of substance use as people with lived expertise in this space. And that is generally, I know there are specific instances where I'm incorrect. I know that in my personal work in QI, trying to find folks that we engage with has some complexity. And I think it's back to the stigma pieces and things we've already really covered. But I want to ask how you, as you work on this, what tips, actionable steps, things that you think about can help support engagement of folks in that community with this quality improvement work? But also how, on our side, and these are big questions, how on our side, we do. Better to allow that representation without tokenizing or just focusing on an experience that's one part of who that person is that doesn't speak to the broader pieces. So two questions. How do we sort of engage? And then how do we do it right on this side? Maybe not right. Right's the wrong term. But how do we integrate best practices?
Nichole - 00:34:25:
I'll try to answer your question and just some of my thoughts around some of the work that I do. And oftentimes, as you know, because we've been at meetings together before, I get really itchy when people say they're doing patient engagement when it's really just checking the box. So I am really happy that the funding world is saying that you need to have people of lived experience within your projects. But I think what that has really done is people who have not engaged before or do not have the heart for engagement are now doing this tokenizing approach of saying, yep, we have this story of this one person, me engaged with them. And to me, that's not engagement. To me, that is truly tokenizing a person and their story. And so my good analogy, I guess, that I give when I teach patient engagement with my students is I'll tell them if you open up a hood of a car and it is smoking, you kind of know how a car is supposed to work and you might have some guesses. But if no one's actually ever trained you. On this, how would you fix it? They drive a car, they have lived experience, right? Like they're around it, but they don't have any, they haven't had any of that capacity building to be able to make a change. And so I get really frustrated when we have these research projects, QI projects, whatever it is, where they just bring somebody in, have them tell their story and leave. That person was not empowered to be able to actually make the change that needs to be made. And so with the work that I do, since 2019 to now, the only grant funding that I've gotten for the Empower project has all been capacity building. And so the moms in Empower have learned how to ask research questions. They know what the right questions are because they're the experts in this space, but how do we translate that into a research study to get the evidence that we need to make change, how to collect data, how to analyze data, how to present data and those types of things. Then after that, that's when I think the true engagement really starts. The other piece is, is it feels like. The engagement is always coming from the system, right? Or it's coming from the academic or the clinician or the PQCs. They are going to the patients. That's not shared power at all. Because there's always somebody in charge and it's not them. And so I really have tried to think of different ways how to make sure that we have shared power and that the questions that we ask are not questions that me, Nichole Knighty, finds academically or scientifically interesting, but it's questions that will actually improve their care and that's meaningful to them. And so I think we need funding changes to make sure that they are the ones. Someday I would love to have a patient group come to me and say, Nichole, can you work with us? We're doing this thing. We just want a researcher. And I haven't seen the structure for that yet. And I don't think we're going to have true engagement until we do. Michelle, what do you think?
Michelle - 00:37:28:
Yes, to all of that. Also in hiring people with lived or living experience and valuing. Their voices and really respecting the knowledge that they bring to the table. Because oftentimes I'll see where they want to hire recovery coaches or peers, but then they disqualify anything that they say. Also, even just the language of being called a peer versus a coach can be. Helpful and harmful because the second I introduce myself as a peer in a setting where there's judicial sort of something happening judicially or with child protective services, it automatically can discredit my entire knowledge base and expertise. So I think those things need to be brought up. Also the trauma that we... Endure over and over in these roles and being mindful of that. Risk for us as people who have lived experience working in the field with other people that might trigger something for us and making sure that we have things in place that protect us, including a supportive management system or check-ins regularly that are coming from a place of care and growth, not a place of, you know, people judging. So. I think those are really important and critical in the work. Because this field is booming. Recovery coaches and peer support specialists, there's organizations all over training people to become this. And we are passionate people. We want to do all the things. We want to help in all the places. And that can get overwhelming too. So finding that path of focus on one thing, which I really struggle with. I want to do all the things, as soon as I open one door, I see 30 other things that need to be addressed. So supporting people through that and knowing how to support them through that because It's hard. And we also have a lot of imposter syndrome in this field because we have this shaming guilt that we've lived with for the past however long we've used. Or been misdiagnosed in some cases, those things can add to our feelings of worth in those spaces. So actually respecting and. And it, and, encouraging the voice. When I worked at the hospital, I was always asked, Michelle, can you tell me what you think about why this person might be wanting to live on the street in a tent? Versus finding housing. And I could give them that perspective of, well, There's so many rules and hoops they need to jump through to live in a. Residential program that I sometimes, I totally understand why they would not want to follow all these things because this is how they live. This is what they want to do. And we need to respect their autonomy.
Christie - 00:40:41:
I hear both of you describing integrating patient voice at all stages, whether it's research, care, advocacy, and not just saving it for you give a talk and then we'll do our thing, right? It's true integration. And I also hear. The point about letting, not letting, letting is the wrong term because that is not power sharing, back to Nichole's point, but truly making space for folks that have that expertise to provide advocacy and expertise that we're asking for and may not be allowing to happen. And I think Again, I feel like it's a little behind where we were with some of the other folks with lived expertise we worked with, with other clinical conditions in this space. But it isn't that they tell the story and then we go in a room and we do the things to make it better. Those are published authors that I want to do what they tell me needs to be done. And I think that's the piece that we're looking to advocate for in this space. I think I want to move to how we wrap our podcast. So because there's two of you, I want to make sure I give you lots of time to answer this. So this season, we have been really focusing on the one thing. And I think to Michelle's point, there's so many more than one things. I always joke that what we do is rock flipping. You flip the rock over and you go, oh my God, there's so many things going on under here. It's not just flipping the rock. It's all the things, right? So with that in mind and that understanding, if you could leave our listeners, with one thing that you would want them to know about your work or your experiences or what they should know as they move to engage communities. To truly be impactful to support folks that are using drugs or substances, especially in the pregnancy realm, because that is our area and in the postpartum period. Nichole, what would you say is your one thing?
Nichole - 00:42:38:
I would say my one thing is, is whatever you're doing, whether it's research. Putting the bundle together, trying to figure out a clinical care practice. That you are going to cause harm if you don't have people who are directly affected by whatever you're doing at the table with you. And it's not just one person. And so in Empower, we have 20 different perspectives, 20 different experiences. 20 different paths to recovery. And you, it is not enough to have one. Because you are going to leave out. The whole other group of people, we tend to think of substance users as like all of the same. And so you need those people at the table. And I say people, not person. And so it's not just one.
Christie - 00:43:22:
Thank you for that. Michelle?
Michelle - 00:43:24:
I think to piggyback off of what Nichole said, the nothing about us without us is critical in our work. And also, I think it's really important to. To invite people that may. May have that power for removing families, breaking families apart. To those spaces. Where we have these discussions about current trends in substance use, where we have talks about the opioid crisis. Because if they're not invited to those spaces, how can we expect them to understand anything that we're seeing and get the full context of just how critical it is for us all to work together? And I've been saying this for years, inviting child protective services to the tables that I sit at, because I love talking to my colleagues who all agree. But that's not very effective because it's really the people that disagree that really need to be involved and leaving that space safe for them as well. Not inviting them so that we can attack them for the. Years and years of history of discrimination and racism that has been, but to open that door for all of us to figure out how to come up with solutions to have better practices and safer outcomes for everybody.
Christie - 00:44:48:
Shared goals. Well, thank you both so much for joining us today. I appreciate you taking the time, Michelle, from a different time zone and Nichole as well. And I appreciate your candor and sharing your experiences with us.
Michelle - 00:45:04:
Thank you.
Christie - 00:45:11:
Thanks for tuning in to AIM For Safer Birth. If you like this show, be sure to follow wherever you get your podcasts so you don't miss an episode. To get involved in work related to addressing maternal mortality, be sure to check out the Alliance for Innovation on Maternal health at saferbirth.org. Together, we can work towards safer births and healthier outcomes for all families. I'm Christie Allen, and we'll talk with you next time on AIM For Safer Birth.