Importance of the Lived Experience

In this episode, host Bailey Perez and guests Molly Martzke and Marianna Raia highlight the crucial role of lived experiences and storytelling in driving system change. By sharing personal narratives, we can illuminate systemic issues and inspire actionable solutions. Join us as we delve into powerful stories that demonstrate how lived experiences can catalyze meaningful, lasting transformation.

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Welcome back to Linked Together, a Family Center podcast, where we embark on a journey of driving systemic change within the genetics health care delivery system. I'm thrilled to kick off Season 2, where we will mix it up a little bit by having different hosts each episode. I am glad that you are joining us as we navigate the ever evolving landscape of genetic health care, bringing together diverse voices and perspectives. So get ready as we embark on this transformative journey together. Welcome to Linked Together, a Family Center production. Good morning. I'm Marianna Raia, and I'm thrilled to be your host for today's podcast, where we're going to be focusing on the importance of partnerships and really thinking about how these partnerships are essential to evolving and improving systems of care. I'm so thrilled to be joined today by my colleagues and friends, Molly Martzke and Natasha Bonhomme, who have a wealth of knowledge and experience in building and growing and navigating partnerships, and I'm super excited to jump into this with both of you today. I wanted to really start the conversation with just defining some terms. There's a lot to really think about and unpack in partnerships. I'd love to hear from both of you this idea of thinking about partners as equal stakeholders and really thinking about and sharing what that means to you, what that looks like in real life. And then we'll go into how that's evolved a little bit over time. So what does being an equal stakeholder mean to both of you? I think it's a really great question when thinking about what does it mean to be an equal stakeholder? And it really means to have that equal stake and that you can have the opportunity to speak up. And so you're not just a participant, right? You're not just someone who is there to respond to questions or to be there as a a sounding board, but can really bring your own perspectives, can bring your opinions, bring your facts, and to really be able to say that is worth the same as someone who's sitting across from me who may have a different background around who may have a different expertise. But we're in this conversation together, and all of those perspectives and experiences are valued. And you want that level of engagement across everyone who's there. To me, that's really what that equal stakeholder means. It doesn't always mean everyone speaks the exact same amount. Some people are chatty and some people are quieter. But the fact that what is shared is really valued. Yeah, Natasha, I think that's a great way to end that and think about that, about how every perspective is valued and wanted to share. For me, when I think about equal partnership. I think a lot about power because I think so much of that plays into that partnership role. So when you even talked about, oh, just being a participant, right? So there's really not a lot of power that's involved in that. You're just allowed to come in and sit at the table, sit in that seat, just maybe someone asks your opinion. Whereas when you think to me about that real partnership, it really is this transparency that's involved, this idea that power distributed amongst everybody. And again, it's so nuanced that sometimes it's hard to define it in some of these terms, because I always feel that when you know it, you know it. And when you see it, you're like, Oh, that's true partnership. And then when you're involved in something and it just doesn't feel right, you're like, yeah, I just don't feel it. So while I do think we want to talk about it, and maybe we can, through our conversations, come about where like, Oh, what does that really look like or what does that really mean? Again, I think for me, it goes back to that idea of power. Who has power? Who gets to control what's said, how the meetings are run, that kind of thing. Yeah, I think that's a really interesting point in building on that, how that power shifts. We talk a lot about influence, and even in this podcast series, I've talked about how all of these things build up together to really influence and change systems. So that's so important to think about where is that power, who has it, and ultimately, what is that power leading to? Molly, I'm going to ask this question to you first. I know you've done so much tremendous work to change the way different groups in the health system as a whole thinks about this idea of equal stakeholders and really truly thinking of families as partners in our healthcare system. I'd I love to just hear your thoughts and some of your experiences on how that's evolved over your time doing this work. Yeah, and I think it has evolved. I mean, again, I think I went into it thinking it looked like one way, and then it has evolved over the years to think about it a different way. But I think of equal stakeholders, everything from when I'm sitting in my doctor's or my provider's office, that I'm an equal person in what happens in that place and what's said and what's decided upon, versus they get to tell me how they think my health care should go or what I should be doing and stuff like that. So I want to be part of that discussion, and I have approached that differently. Whereas, again, maybe years ago, I would have just gone to that office visit and just listened, right? And then went home and maybe did what I wanted to do thing. Whereas now I've found providers that really do listen to me, and I even approach it with that, Hey, just so you know, I do consider myself an equal stakeholder. I am an equal partner in this, and so I'll question, and we'll have conversations about it. Why are we choosing this way versus another way or something like that? And if you're not comfortable, then you might not be the right provider for me. It doesn't mean that you're not a good provider. You just might not be the right person for me, right? So I think about that on that individual level. But then when I start to think about it more on that systems level, I think about there's lots of ways we can impact that. So I know I've had lots of conversations with people, even word choice, right? So when we talk about doing things for families, I'm like, no, we're doing things with families. And I think even if you have the best intentions, when you switch that language to doing it with someone and being very cognizant about those words, then those actions start to follow. And you're like, yes, we're doing this with families. And then when I'm there, I'm again, always going, you know what? While I hear lots of family stories, I'm one person, right? So who else aren't we reaching? Who else haven't we heard from? And so really thinking about how, again, even the stories we hear are those that reach out or that we see in our work. But we know there's so many families that are out there that we don't get to hear those stories. And so for me, thinking about this partnership and where that needs to happen is it's really trying to find those stories so that we can impact the system that way. Yeah, I love that. I'm going to ask Natasha the same question, but before I switch over to you, Natasha, Molly, if you're willing to elaborate a little bit more, I'm curious if you've felt challenged in the idea of saying, no, you may not be the right fit for me. And if so, How have you navigated that? Yeah, I have. Honestly, I have. I've heard different things from different providers. I've heard, again, as we've gone through the years, Oh, you guys are pretty intense parents. And I've always had a good sense of self or what direction I wanted to go in. Not that I don't have doubts, but I've really had that. So I've leaned into that. I've leaned into my support system and go, Hey, this is what I'm thinking. Having that support to bounce that off. But at the end of the day, I said, You know what? If they're not a good fit for me, I'm not a good fit for them. I don't go into it trying to make someone feel bad, but I also need to understand how or why something's happening. So that's how I process things. And then I can be, again, that partner in that work. So And I do remember saying at one point when the kids were small and somebody... I don't even know what they said, but I think their feelings were hurt because I was questioning them. And so they felt that I was questioning them as a professional, and that wasn't it at all. And At the end of the day, I didn't set out to make somebody feel bad, but I said, You know what? If we're going to pull out people's feelings and talk about hurt, they don't own the corner of the market on that. And so while I try not to bulldoze through people, which I think I sometimes can, again, it's that I know what I want and I know what I'm trying to get to, I also am trying to listen to that other perspective and again, trying to make it work for everybody who's there. And when I say that, that's really my individual care. That's not really how I approach systems work. I just want to say that. But it's important and that probably bleeds into a little bit of how you think about systems-level work as well. I mean, it is true. Again, if we were being honest, yes, I can. I'm passionate. I think families as equal stakeholders are really what's going to change the system. We've been doing what we've been doing for how many years, and we're not getting the outcomes that we want. And for me, I truly believe in that families as equal stakeholders is what it's going to take. And so I am passionate passionate about that and not afraid to say that in meetings or funders or whomever it might be, because, again, I think it's just it is that, but it's also this idea that, well, I think that's an important missing piece. I also don't think there's that equality. So that's the word I'm looking for. I don't think it's really one person is more important. I think we all have all these pieces to this puzzle. And if we could really honestly just sit down, put our egos aside, and sit there, we could put this puzzle back together in such a better way that works for everyone involved, whether that you're a provider, or a payer, or the family trying to navigate it. Yeah, I love that. It's this big It's this big picture puzzle that we're all working on, and we're not quite there yet, but we have all the right pieces. We just need to get them in the right places. So, Natasha, I'd love to hear from you also, just this idea of how have you seen partnership and equal stakeholders evolve over your years of work? Yeah, I really agree with a lot of what Molly has said in terms of power and those dynamics. When I think of how equal stakeholders in that concept has evolved over time, it really is actually putting more into the hands of families themselves and really having that idea that it's not just about inviting getting someone into your space, but saying it's our space. Sometimes for some conversations, it's not my space. It needs to be another group's space because their voices have been outside of the conversation for so long, and we really need to course-correct. So I always think it's really interesting to think about that word equal because it's not necessarily always same-same in every single instance, but idea that overall, we all can contribute, and we all need to contribute to be able to solve that puzzle, as Molly was saying. And I have seen that evolve, whether it is meetings that are now held by family groups, and they invite providers as opposed to the other way around, to there being more opportunities instead of just a time for families, a time to actually have topics, and everyone contributes to that conversation, whether they are a provider, a family member, they have a condition themselves or they're part of the public, really that it's not so much about my labeling, but really about what I want to contribute to the topic at hand. And so we've definitely seen that. I will have to say, too, we've also seen some places where that has regressed. And of course, as with any movement, you have to remind people and to bring up the strategies and to call things out and to say, Oh, actually, I think we need to hear more from certain people. And again, back to this idea of like, No, we're not having this conversation for a particular population or for certain people, but we are having it with. And how can we be better at that? I can remember being in a meeting, with both of you, and we talked a bunch about word choice. And Molly, what you said earlier, it stood out then and it stands out again today in that we aren't doing this work for families, or families aren't just a recipient of this work or of health care. Families are an equal part of this, and it should be with families, not for families. So I love and echo what you both are saying. I'll transition just a little bit here, and I love that this conversation is really focusing on partnerships as groups of people. I'll be totally transparent. When I first started doing this work and thought about partnerships and even thought about this podcast, it was like, well, are we talking about organizational partnerships, or are we talking about this idea of authentic partnership with families and with different groups of people? So I'd love for both of you to share from your perspectives what you think it takes to create authentic partnership? I think that's a really important question, and one that if you believe you are in partnership, whether from an individual perspective or an organizational one, to ask yourself that pretty frequently. To me, authentic partnership means I am invested in you and your work as I am in my own, and not just in this project, not just in this one moment in time, but really, I believe in your success, because your success is my success and my success is your success. If we really are trying to make change at that system's level, there's a lot that needs to happen. And so really having that kind of a focus on partnership. And with that is a lot of honesty. We've worked with some really amazing organizational partners who will say, Wow, here's an opportunity. You really should be involved in this. And it's very clear the funding opportunity is a little bit more on the research side. We do that, but we want you right alongside us in that. Tell us how we can do that. Tell us how we can do that better than maybe we have in the past. And so, again, it's that honest and that self-reflection to really make sure you are not just meeting the goals of authentic partnership, but really pushing that forward and to be able to say over time, wow, this relationship started off here, and now look at all that we've done and how we've done it. I think sometimes people get really focused on the what and the outputs and all of that, and that's very important. The products are very important, but it's really about the how. How does your partner leave that engagement? Do you feel better? Do you feel like, wow, that was really wonderful? Or do you leave feeling used or feeling like, wow, I really don't want to do that again? Those are the types of questions that I think both individually and organizationally are really important to ask. At Expecting Health, we do that pretty frequently. Yeah, Natasha, I think that's great. I just also want to add on a few other words into that, trust, transparency. I've been in a lot of situations where, Hey, I want you to trust me in my opinion and how I do things, but that isn't always reciprocated, right? So it isn't always, I don't always trust you to go take that project on and do that. It's like, Oh, well, that's great as family, but you know what? Let's give it some oversight here. And so I say an authentic partnership looks like that trust, and it also looks like that transparency. It's that ability to have some conversations and say, You know what? We would love to fund you, but we really can't right now. We're getting some pressure here or there or whatever that is. But I feel that that transparency is very, very difficult, even though some people want to do the right thing, that they just can't seem to come to those conversations in the same way because either they don't trust you, they don't trust themselves. It's that back to that power. It's all of that. And I think it goes back to Natasha saying, you really need to do some self-reflection on what it is that's holding you back from those type of things. I love what you both are saying, and there's some pretty important and key words that come up in that honesty, trust. And what I hear when I hear you both saying that is it takes a relationship and it takes time. And I I think, and everything that we've talked about so far, that, again, is an investment, and that's not just something that happens. It happens with a purpose, it happens with meaning, and it takes time to grow and develop these true partnerships for them to feel authentic. You said earlier, Molly, and I loved that, that sometimes you just feel it, and sometimes you feel like this isn't right. I believe that there is a feeling to that, but that feeling is created by building a relationship and building that trust and that component to being able to collaborate in a very authentic way. I know you both have done a tremendous amount of work with specific organizational partners and partner groups like we've been talking about. I'd love if both of you would be willing to share maybe a specific time or a partnership that comes to your mind that's really helped advance the mission of that you're working on. That's such a good question. And one of the things that we do at Expecting Health is 360-reviews, where we have our partners give their feedback to us as individuals, but also as an organization. And there have been a number of times when we've gotten such just rich feedback, but what that took is for us to be open to that feedback, right? That's also That's an important part of partnerships and an authentic partnership, being open to feedback and giving people the opportunity to help you build towards where you're trying to go. And so I can think of organizations that have really taken the time to better understand us, have a separate side conversation and say, Oh, we know we're working on this project, but let's talk about our organizations. Let's talk about not just our missions, but where we're at today, right? And really It's getting to know each other. It's like you said, taking that time, really having that investment and wanting to understand where someone's coming from, and then giving the opportunity to say, I'd love your feedback. I'd love your perspective. What are you seeing? Sometimes, this is both for us as individuals as well as organizationally, sometimes you don't always see all of yourself. It's really helpful to have a trusted person or organization be able to share what they see and just to be able to take all of that in. Yeah. And I think, again, it takes a lot of work. It takes a lot of effort. It takes a lot of self-reflection, but it also takes certain philosophies, right? I love how Natasha talked about your success is my success. And I think if you really take that on as a philosophy, it rings through, and it becomes authentic to individuals, to organizations. They're more willing to share your stuff, send your stuff out to audiences that you wouldn't have reached, right? So again, to me, at the end of the day, it helps you. In this work, it's hard. There isn't a ton of funding that goes. So it can sometimes have this dark underbelly of we're all trying to scramble around for those little bits of crumbs that come our way. But I've always been, you know what? I applaud when people get their grants or they do their work. And I always make an effort to be like, Oh, this person is really great at this. And again, to try to really acknowledge that because I think then they feel that, and then they see that with you and are just as willing to reciprocate that as well. Yeah. No, I definitely agree. And that connecting the dots piece is something that's so important. I think we all do this work and are so enmeshed in the different parts of this work that sometimes it just takes someone saying, Hey, did you reach out to so and so? Or, Have you engaged this person in this way or this group in this way? And because you're so focused, you don't always see that. Having that relationship with a group of people or with an organization definitely helps, I think. It helps you think about things in a different way that you may not be already thinking. One of the other examples that comes to my mind when I'm thinking about advancing our mission at Expecting Health, and we've talked about this previously, but we did have several different ways that we've convened different family groups and brought them together for different events or different programs that we've developed and I think what stands out to me in the work that we do there is before we even develop or offer the program, we're often bringing together a group first to ask the questions of what would make sense, what would you want to learn more about, how would you want to learn more about that? So even to that earlier discussion, Molly, of bringing families in as partners alongside that development phase and the idea of coproduction and coproducing different programs and elements of this work that we're doing together, I think, has made a profound difference in that final program or that final product that we're working on. And so often that step gets missed. People feel like, Where am I going to find families that want to participate? And we're like, There are lots of families that want to participate. It's just as simple as inviting and asking and bringing them in as those equal partners. Yeah. And I think that one other benefit of doing that pre-work is really then we have solid ground to be really confident about the work that we're doing because we have heard from people from the beginning in terms of what is important, what is needed, and what are some of the best approaches to do that. I think especially in this type of work that we do around family engagement and making sure the family perspective is not just a part of the discussion, but oftentimes the conversation is centered around family perspectives and their experiences. That can be really tough. It's nice to have a bit of that confidence to say, No, we know this because we asked people before and we didn't make assumptions and we checked over time. That might have been an answer two years ago. Let's check back in with that group. Let's really make sure that we're still on track or that this is still the need. And that is so important now as everything moves quickly, whether that's technology or how people are taking in their information. So really having those opportunities, like you said, to check in early and to speak to people before you even embark on something, again, I think really helps us then be able to be authentic partners to others because people look to us to do that type of work and to have that rootedness in the work that we do. I go back to, I think you said something, Marianna, about just it's important to ask in relationships. I think it's also that relationship, we continue to develop that, whether we have a project or not, right? So whether we continue to check in with people or make sure that they're on our email lists, and again, personally reach out or follow them on their social media accounts and say, Hey, you're doing an awesome. And so that when we do have things pop up, it really does feel like authentic engagement and not just, Oh, by the way, can you do this favor for me? But it's really we have been cultivating this relationship with them over the years. And so that's hard to quantify. That's hard to do, especially, again, when we all have work to do and things to check off our to-do lists and stuff. But we're really intentional about that work and about that relationship and the importance of that to further what we're trying to do. I love all of that. I'm going to go back for just a second. Something you said made me go to a previous conversation we had, and I'm asking this question through the lens as a genetic counselor and having worked with families in clinic and this idea of it takes time to build a relationship. We've been talking about that and to build trust and to be able to partner with a family. But sometimes the reality is you don't have that time as a provider. So in your experience, what words of encouragement or what would you say to providers that would encourage that partnership and building that early in in a visit or in a process or something along those lines? Yeah. For me, I think it has been... Some of it is that openness, right? So again, we get it. There's 10 minutes, maybe not even that for your office visits sometimes, something like that. But honestly, that, Hey, you know what? If you have a question or you're processing this and it comes up later, hit me up through the patient portal. Send me an email, I'll email you back, or whatever. So I guess there's That piece of it, of that just because I'm saying goodbye in five minutes doesn't mean I'm dropping you and letting it go. Also that there's those ideas of resources. And so maybe a provider thinking they don't have to be the answer to all of that, and that there are other supports out there for families that do a really good job, not on the medical piece of it, obviously not, but on that supporting the family. I've talked about my kids raising two deaf kids and trying to put hearing aids on a nine-month-old, right? It's almost impossible. And sure, did I get tips from my audiologist? Yeah, I did. But who really helped me were other parents who had done it. So it was that connection. So it really is this idea that there are others out there. And so for me, that provider that's willing to help make that connection for me is important. Yeah, this is Natasha. Molly, when you're speaking, it makes me think of that team approach. And how can you really set the stage as a provider to make sure that families feel that there are opportunities to connect and have partnership with the healthcare system, and that can mean lots of different touch points, right? So you can't cover every single thing in 10 minutes, but you can convey that you care and that you are part of the solution, as the parent is part of the solution as well. And really being able to say, I'm going to send you something through the patient portal, or encouraging people to say: This has only been 10 minutes, if you have questions tomorrow, great. Here's a way to get those questions to me or to someone else who can be a really good resource. And so it really is finding those opportunities so that It doesn't feel like a one and done. And sometimes you meet with a specialist, and it is. That is the reality. So then you just have to set expectations. I think that's probably one of the things that I hear from family so often is the not knowing. It's, Oh, I thought I was going to see this person multiple times, but then I only saw them once. And then there is this other person that I actually ended up seeing over the course of a period of time. It just would have been helpful to know that. So again, the opportunities to set the expectation and then to to follow up on that expectation. Yeah. I echo both of what you've said. And just, again, the thought that's coming to my mind is this idea of validation, of just setting the stage and tearing down that wall pretty quickly of, I won't know all the answers, we won't know all the answers, but together we'll find the answers. And I think to your point, you can do that in a short amount of time without having to know everything and all of the answers to the questions that may come up. So I think we have time for just maybe one more question, and I'll just, as we wrap up this episode, want to turn it over to both of you to just share, again, some final words, words of encouragement, words of advice, For people that are wanting to think about doing this work and wanting to think about bringing families in as partners, what encouragement would you give them? How can they go about getting started in that work? This is Natasha, and I would say the first, the next step is to try, right? So often we think that people are asking perfection of us when really they're just asking for consistency and to be able to be there. So I think when people are starting off thinking about what should this engagement look like? What should this partnership look like? You can ask the person, say, Hey, I really want to work with you. What are some ideas you have? What is feasible right now? And sometimes that'll be, I can only work with you by having a conversation once every quarter. Great. Let's have that start. And what you're really doing there is starting... You're doing that relationship building and really going from there. And then, of course, checking in over the course of time. And again, I think just getting started, it can be the scariest piece. It can be worry, you might misstep, or we all do that. We're human. It's really about just that consistency that's showing up. And if something doesn't go quite great, you can say, Well, that didn't go the way I thought it was going to. That didn't go the way that I had planned. I'm really looking forward to being able to course correct and really accomplish what we're setting out to accomplish. Yeah, I like that idea about try, and again, just taking that scary first step, not letting perfection get in the way of just starting and stuff like that. I also think about this idea of try and not let perfection get in the way of just starting. But I also think to put aside your preconceived ideas about what you're expecting. And when you come in with that, with that open heart and that open mind, I think individuals be astounded with the ideas that families can bring to this partnership about change, about ways big and small that can really improve the lives and the outcomes for families. So that's what I would like to add to that. I love that. Well, I definitely want to thank you both for joining me today. I knew this was going to be an amazing conversation. I knew you both had a wealth of knowledge, but I still walk away with something new, and I just appreciate you both. So thank you so much for joining us on today's session of Linked Together. Thank you for joining us today. What great conversations we had. I hope you check out our other episodes, as well as more information at expectinghealth. org. The conversations that we had today is supported by the Health, Resources, and Services Administration of the US Department of Health and Human Services as a part of the work of the National Genetics, Education, and Family Support Program. The contents are those of the participants and do not necessarily represent the official view of nor an endorsement by HRSA, HHS, or the US Government.