Emily 0:26

Hello, and welcome to our second episode of MoMMAs Voices. My name is Emily Taylor and I'm in charge of engagement and outreach. One of the things I most enjoy about working for MoMMAs Voices is our matchmaking process for pairing certified patient family partners with providers. Every third podcast, we will talk about different matchmaking success stories. We hope this can give our PFPs more information about the types of engagements out there and give insight to providers and organizations of how to include patients with lived experience into their work. I am excited to introduce our guest today. Catherine Mather is a senior project director at the Institute for Healthcare Improvement and works closely with internal IHI teams, external IHI, faculty and customers to design and ensure excellent delivery of projects, focus on redesigning systems, and establishing cross-sector partnerships to create improved and more equitable health and healthcare outcomes. Her current project portfolio includes work and population health, complex care, and maternal and neonatal health. Amanda Quillan is a certified health education specialist and maternal health advocate based in Virginia. She survived a near miss related to the birth of her third child, a postpartum hemorrhage requiring multiple blood transfusions, surgeries, and a month long stay in the I C U. Amanda now shares her story to raise awareness about the need to improve maternal health and patient safety. She serves as a volunteer with Patient Rising and Virginia Medical Reserve Corpse. Emily Liczbinski is a preeclampsia and hemorrhage survivor and a mom of two. She is a childbirth educator and international board certified lactation consultant. Emily has a passion for empowering women with the knowledge and tools to make informed decisions with their healthcare. Thank you all for being here today. Catherine, if you don't mind, can you please let us know more about I H I and AIM and their role in maternal health? Then can you tell us a little bit more about the hemorrhage change packet?

Catherine 2:45

Sure. Absolutely. But first, thanks so much, Emily for the, the warm introduction and thanks for having me here today. So IHI is a global not-for-profit organization with a mission to improve health and healthcare worldwide. We also have a long history of working in maternal and neonatal health around the world, specifically here in the US from 2018 to 2021, IHI worked on a major project funded by Merck for Mothers that we called Better Maternal outcomes. One of our aims in this work was to support some of the national efforts to implement reliable evidence-based care for people who birth. And it was through this work that we first started connecting with aim. So AIM or the Alliance for Innovation on Maternal Health is a national data-driven patient safety and quality improvement initiative. And aim works through state and jurisdiction based teams to align national, state jurisdiction and hospital level QI efforts to reduce preventable maternal mortality and severe maternal morbidity across the United States. The aim patient safety bundles are a core part of this work. They are clinical conditions specific and follow an evidence-based structure that when performed collectively and reliably have been proven to improve patient outcomes. To promote the successful implementation of these bundles, AIM partnered with us here at IHI to create a series of associated change packages. For those who aren't familiar with the term change package. It, it is really just that it's a package of changes or a document that lists some of the evidence-based or best practices specific to a topic. It's usually organized around a framework or a model. And in the case of the obstetric hemorrhage change package, it's structured around the aim hemorrhage patient safety bundle. Essentially, a change package aims to take things from a conceptual level to a very practical and granular level. For example, one of the key concepts from the obstetric hemorrhage AIM bundle is the importance of measuring and communicating cumulative blood loss to all team members using quantitative approaches. The change package takes this concept and then offers specific change ideas to help accomplish this. For example, ensuring that all appropriate rooms have scales available with teared weights of pads and drapes, or using standard calculation tools and having laminated listed dry weights on hemorrhage carts. So really getting into the kind of very specific actionable changes that an organization can make. The hemorrhage change package specifically is designed to support perinatal quality collaboratives, PQCs, or other state and jurisdiction based initiatives to leverage the aim obstetric hemorrhage patient safety bundle more effectively.

Emily 5:27

Awesome. Thank you so much for that explanation. I'm curious to how the idea for patient input came across and why that was an important thing for you guys to do.

Catherine 5:37

Yeah, no, that's a great question. And you know, honestly, this came up really early in our work together. My team at IHI as well as our colleagues at AIM talked really early in our partnership of the importance of including people with lived experience in this work. One of the key tools that IHI uses to create change packages are to host something that we call an expert meeting. For the hemorrhage change package, we look to convene a small group of experts in the area of reducing harm from hemorrhage for birthing people.. I think it's important to note that we really think of expertise very broadly. And we were very intentional about the mix of experts that we wanted to have in the room or the virtual room. In the case of this expert meeting of course we wanted content experts, so nurses, doctors, midwives, program leaders. We also wanted folks with quality improvement expertise. But a third and kind of really critical component of expertise that we wanted to have was something that we call context experts or people with lived experience of hemorrhage. It was really important that we had all of these perspectives in the room together, you know, doing this work one of the challenges that healthcare providers that are trying to improve the systems that they work in is that they often know, about why things aren't working well and that can sometimes lead to trying to justify them or make sense of them engaging with people like Emily and Amanda make it much harder for us to kind of stay in that space. In this case, our context experts helped to ensure that we were centering, birthing people in our work and that we weren't inadvertently suggesting changes that might have unintended consequences for future patients. I'd also note that their perspectives also pushed us to think a lot more creatively about our suggested change ideas as well.

Emily 7:17

Great. Thank you so much. Amanda and Emily, I wanna hear a little bit from you both. I know your introductions are a very small summary of your story and what you went through. But Amanda, I would like to hear from you first about what made you get involved with advocacy work and how did you come across the Mama's Voices training?

Amanda 7:37

Awesome. Thanks so much for having me on today, Emily. Really excited to be doing this. So I think like a lot of people who experience something major in their life, that it motivates you toward change, it motivates you to wanna make a change. And that's really where I was and I was looking for any opportunities that I could find to kind of get involved and make a difference. And really just searching for those opportunities is how I came across MoMMAs Voices online. As I looked at the website and I saw all of the partner organizations that MoMMAs voices, Was involved with, I really just felt that it would be a really good group to get involved with that could really open up a lot of doors for opportunity for me.

Emily 8:18

What was the training like for you? And was it helpful towards this experience with IHI? I'm not sure if this was one of your first engagements or not. Could you expand on what the training was like for you and taking part in a project like this?

Amanda 8:35

So for me the training was very meaningful, very impactful. This was my first major maternal health related advocacy opportunity. And I can tell you, working in academia, I've done a lot of online training. And a lot of times it's something you click through, you don't necessarily engage with, you don't necessarily interact with a whole lot. And I really liked that this training didn't feel that way. It allowed me to really reflect and draw on my own experience as well as connect with other people through the Facebook group that a accompanies the training. And the one thing that I really liked is the training does a great job of helping you assess whether you're in a, in a good mindset to be prepared to take on this type of advocacy work. It can be heavy, especially for survivors. And I really appreciated that the training was in a gentle way, helped you assess if you were in a good mental space to be ready to kind of pursue this type of work. And that helped me with this work with the IHI because it kind of helped me really be able to look at myself and say, am I prepared to be able to enter into advocacy work at this level.

Emily 9:44

Thank you so much. I remember when I got the final packet in an email and got to see your names and the acknowledgements. I would just like to hear a little bit about how that felt because a lot of these engagement, we really hope will lead to change, you're not always gonna see the effects. It might start the ball rolling for a bigger thing. But what was that feeling like being able to see your name on, on such a big, important document?

Amanda 10:11

Yeah, it was a little emotional honestly. It was a very proud moment. My near miss happened 10 years ago, so it was kind of a full circle moment for me. Yes, it's been, you know, that long, but now I'm finally involved in change. I actually screenshotted my name and sent it to a few people who knew that I had been involved in this. And yeah, it was, it was really, it meant a lot. When you decide you want to make change and you wanna take part in something like this, sometimes you feel like I'm just one person. How much can I really do, you know, how much can I really accomplish? So seeing that like in a tangible way that I had participated in something even as a, you know, a small part it really, it, it really meant a lot.

Emily 10:52

That's very special. Okay. I am gonna move to you, Emily. Thank you so much for being patient. I would also love to hear from you what made you start getting involved in advocacy how you got involved with MoMMAs Voices and what that's journey has been like for you.

Emily L 11:07

Thanks Emily for having me. I'm excited to be here today. For me, it was after the birth of my first child. I had preeclampsia that turned into HELLP syndrome and I was also a childbirth educator at that time, and I was thinking what were some of the things that might have been missed in my care? I felt like I got reasonable care, but it did kind of turn into an emergency very quickly towards the end of my pregnancy. And how could this be prevented? A lot of things that I would go through was prevention. So looking through online, I got involved with the preeclampsia foundation and did some research and surveys with them. And then one day got an email from MoMMAs Voices and I was like, I don't know what this is. Let me check them out. I've never heard of them. And I think I was probably one of the first few people you guys had just launched and I decided to take the training, not really having any idea what I was actually getting into, but just honestly, I'm usually generally interested in learning more and seeing where this could lead as far as myself healing and helping other moms have better outcomes.

Emily 12:21

What was your experience like on this project? Because like you said, you weren't sure a lot about, you know, what all this involved. Was it kind of a nerve-wracking experience? Did you feel okay during it? I know a lot of our PFPs haven't been paired yet, or the new ones can have a little bit of anxiety which is totally valid around their first engagement.

Emily L 12:42

I think there was a little bit of anxiety just because with anything new there's always excitement and anxiety. But I felt very supported. I felt through the training. there was a lot of emphasis on self-care and self-healing first. Taking care of yourself first. Checking your feelings first, and then every step of the way, any time anything's been offered or there's an opportunity that comes up. I always felt like the staff with MoMMAs Voices has always been there to guide us through. So I don't feel like even though there was some anxiety I don't feel like I was ever getting into too much that I couldn't handle just with the support that I had around from the staff.

Emily 13:25

Awesome. I just want people to also know that if speaking in front of 300 people is not your jam. we have other opportunities to a little more intimate. I'm glad to hear that you felt supported through the process.

Emily L 13:38

You guys always, you know, say it's okay to say no if you don't feel this is right for you, or that's out of your comfort zone or it's too much on your plate right now. And I feel like we sometimes get away from that as a culture just in general. It's always nice to know you always have the choice to say no. If for whatever reason, that just doesn't seem like the right fit for you.

Emily 14:00

Same question for you that Amanda had. What was it like seeing your name in the acknowledgements?

Emily L 14:06

I honestly got chills when you sent out the email and I got to read through and see it. I mean, the whole experience was amazing. Just being in the virtual room and everybody from all different disciplines, those of us that had lived through it, those of those that were providers that had been through it or had different expertise. I always felt like I was heard every step of the way through this experience, but to actually have it validated in writing was an amazing feeling. It's hard to express just kind of that moment of chills like, wow, like this is permanent. Sometimes you feel like you do something and you're like, okay, that was great. That felt great. But to actually see it in writing makes it feel a little more permanent.

Emily 14:47

Awesome. Catherine, I'd like to go back to you. I know you had mentioned a little bit already about how Emily and Amanda's input really helped you guys, but can you speak a little bit more to that? What was your experience going through this process with Emily and Amanda during this creation of the packet?

Catherine 15:05

Yeah. I mean, you know, in short Amanda and Emily's input was invaluable and there's like not a shadow of a doubt that we had a much stronger final product. thanks to their thought leadership and, and guidance along the way. I mean, I think both Emily and Amanda just spoke about this, but they were able to really actively participate in the expert meeting offering insights from their own personal experiences. And I think also helping to guide the, the larger group toward a vision of an improved system of care. Both Emily and Amanda offered reflections on where their needs weren't met and where harm occurred. And then I think we're able to take that and offer suggestions for specific actionable changes nearly all of which were included in the final change package. As Emily just said, they each also reviewed some of the early drafts of the change package and provided some critical feedback from their patient perspective there as well. Emily and Amanda, you both helped us hone in on some of the specific moments in the care process for obstetric hemorrhage where harm is likely to occur, and then provided guidance on changes to prevent similar harm in the future. To me it was just so powerful to see Emily and Amanda harness their personal and, and frankly, really painful experiences i n an effort to improve the care experiences and outcomes for other patients in the future. I think the types of stories and experiences like those that Emily and Amanda shared during the expert meeting really help to shine that bright light on the systems that we really need to kind of have a clear steroid in order to improve them. So, you know, just invaluable input and, and very grateful Amanda and Emily for your role in this work.

Emily 16:47

Thank you Catherine, and hats off to you guys for including patients and, recognizing the value. Emily and Amanda, I just wanna hear a little bit more about how this engagement affected you. Did it charge you up for other engagements that might come your way? Amanda, I just wanna know your overall feeling of participating in this.

Amanda 17:09

It was a great experience for me. It really did motivate me to wanna do more. I really appreciated that the entire team was so receptive to what we had to say as people with lived experiences. Going into it that was kind of where my anxiety came in was how much are they really gonna listen to us as people who aren't necessarily experts in the field in the way that other people are experts? And I didn't wanna overstep that role as someone with a lived experience, as a context expert. And I really appreciated that. They really listened to what we had to say. They made edits based on what we had to say. They really stopped and you could tell that they were thinking about the points that we made and the questions that we raised. And I really walked away from it feeling like, wow, like that had an impact. I worked in healthcare for a long time. I was a X-ray tech and because of that, I was able to drive my care more than a lot of people, I was able to ask a lot of questions in a lot of ways I saved my own life because I knew the questions to ask and the things to look out for, and I just kept thinking, what about the people who don't have any healthcare knowledge, that don't have any background in healthcare, they don't know the things to look out for. They don't know the questions to ask, and so I really wanted opportunities to really advocate for those patients who walk in with no background in healthcare. And so being part of this group with experts in the field and being able to hear their input and hear the way they look at the situation from a provider standpoint, but then them take the time to listen to how we look at the situation from a patient standpoint it really was just a great collection of minds and perspectives. And I really think that's what made it be so successful.

Emily 18:56

Thank you, Amanda. What about you, Emily? What were your overall feelings afterwards? Did you feel charged up to do more? Did it make you kind of take back and identify some of your, you know, self-care needs? What was your experience like?

Emily L 19:09

It definitely wanted me to do more just because it was such a positive experience. Just exactly what Amanda said, you felt so validated, you felt like you were heard, you felt like your opinions mattered. I feel like if it wouldn't have been like that, I might have stepped back and questioned, you know, is this right for me? And it might have been something where doing the debriefs like you have after those experiences would help anybody that might have a negative experience identify that this may be a possibility, but you know, it just depends on the situation. Sometimes things don't always go as we planned or people don't always listen to us as we'd wished or hoped. I felt like there was enough control in there where I feel comfortable. If something doesn't go or the next time I step into a role, if it doesn't go as planned, I can speak up and say, Hey, this was my experience. And MoMMAs voices would take that into consideration and maybe debrief and go through that. Anytime you are speaking, whether or not it's a positive or negative experience, positive is always of course makes you feel better. It does bring up a lot of those emotions and things that you may not think about on a daily basis or that you may have dealt with a little bit already. So there was a little bit of reflection just going back to some of those memories of things that I hadn't thought about. Or hearing somebody else's story and just empathizing for them, because you are in a room with other people that have had lived experiences that are similar but also different and they may have lost more, or you may have lost more. You know, everybody's coming from different sides of the fence. But you know, just taking a minute to think about that after the meeting and taking a moment to reflect was really helpful for me. I think that's also part of the training that we went through before we went into a role to advocate is just making sure that we are able to have that self-care moment and that we have dealt with those feelings so that when we do go into advocacy work, we don't feel like it's something that we can't handle.

Emily 21:10

Love that response. I really appreciate that, Emily. This can be a triggering and traumatizing experience to kind of have to dig back into those experiences. And, you know, MoMMAs voices always wants to be here as any sort of support that you need. The most important thing is to always check in with yourself on your feelings after doing something like this. Well thank you Catherine, Amanda and Emily. I really appreciate your time here today. I think this is gonna be really valuable for our listeners. Thank you everybody listening today and our next podcast will be here in two weeks. And thank you for listening.