Convening

In this episode, host Natasha Bonhomme and guests Vicki Hunting and Marianna Raia  discuss the power of convening and bringing diverse groups together to drive system change. By fostering collaboration and dialogue among stakeholders, we can create innovative solutions and build more resilient, inclusive systems. Join us as we explore inspiring examples of how collective action leads to meaningful, lasting change.

Transcript

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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 a diverse voices and perspectives. So get ready as we embark on this transformative journey together. Welcome to Linked Together, a Family Center production. Welcome, everyone, and thank you for joining us on Linked Together. I'm today's host, Natasha Bonhomme, and I'm joined by my colleagues, Vicki Hunting and Marianna Raia. We are speaking about convening and the importance of bringing people together. So let's jump in and talk about what convening even is. For me, it's the simple but not always easy act of bringing people together, being able to provide a space and a time for people to share their perspectives, share their opinions, sometimes differing from each other, but really just that idea of coming together. Vicki, what do you think? For me, I think the convening part is kindred spirits coming together, like you said, to share their ideas, to bring their different perspectives, ideas that they have, best practices that they've been using. And I think it's also about not only diversity of the organizations or of the people, but thinking outside. Maybe the conversation needs somebody, an organization that's insurance-wise instead of typically who we gather together are ones that we know. So thinking about who else we need to invite to the conversation. Yeah, that diversity of perspective is really, really key. Marianna, your thoughts? Yeah, I think it's such an interesting word. I agree with you, Natasha, that on the surface, it feels like the answer should be, it's just bringing people together. And I use the word just on purpose, when in reality, it's so much more than that. I often think of the word intentionality when I think of convening and for the reasons that you both have already mentioned. To me, it's really about bringing that diverse perspectives together, but for a shared purpose. So even though you might be bringing together a group of people that have really different opinions and really different experiences. I think the fact and the important thing about convening is bringing that diverse perspective together. And diverse not just for experiences, but thinking about people from all different backgrounds, all different socioeconomic statuses, all different locations, and just really coming together to lift voices and to build connection. I think so often convening is really to try to build a connection of that shared vision that that group may have. I really love that idea of lifting the voices. And after all these many years, we are all perfect at virtual meetings, right? Or maybe not so much. I know I We still have issues with that. But even with that, why do you think it's so important for people to come together in person? I think this is something as an organization, we talk a lot about in terms of we want to bring people together. Convening is one of our pillars. And so often we say, Okay, well, we can do it virtually, but what if we did it in person? And what if we really tried for that? So I'd love to hear from both of you in terms of why that so special when people come together in person. This is Vicki. I think for me, it's in person, you're able to build those personal connections that are offline from the agenda of the meeting. And when you're in a Zoom or virtual setting, it's really hard to do those. And so then people don't speak up. And so when you're in an in-person situation, you have that opportunity to build relationships one-on-one as well as meet people that you've not known before. In a Zoom meeting or online, it's a little harder to get to know people individually. Yeah, I totally agree with that. I think, too, It's important when we're talking about convening, and we do talk about it a lot, we often also talk about why are we convening? What is the purpose? And I think virtual meetings are great, but a lot of times the reason that we might be having a virtual meeting is to convey information or to share information, or maybe it's to brainstorm or talk about something. So that can be done virtually, and it can be done successfully. But when I really think about the purpose of convening, and like I said earlier, it's with intention, and it's really for shared vision, you just don't get that virtually. It has to be in person. Those what I call hallway chats or lunch meetings, they just aren't happening when it's happening virtually. And that's not because people aren't trying to do it. I think that people with virtual meetings do a great job of networking and finding places to connect. But there's just an element missing when you're not face to face with someone, and you can't always see all of their body language, and you don't always have those sidebar conversations. And so I just think that there's something that will always be captured when it's in person that you just can't quite get when it's a virtual meeting. This is Natasha, and I really agree with you in that when you are in person and you can see someone's body language, you can really pick up on those clues around if someone wants to get into a deeper conversation or not. I think we really so often, especially on virtual calls, we've become accustomed to almost performing. And so we can really see, Okay, the camera's on. I have to look bright-eyed and bushy-tailed and have my smile on. But sometimes that's not what the conversation is really is needed for, right? It's those hallway conversations when you can say and pull someone in and say, I'm really struggling with this topic, or That was really rough. I feel like the room is not getting it. And so much can come out of that. So I really do agree with that. I find it hard, too, in virtual meetings. So often And you have thoughts swirling and ideas being generated, I should say. And it's harder to share those. There's not always a place to do that. And so, yeah, to that point, it's like, oh, I have this idea, and I can't quite figure it out. And if you're with someone, you've gone together to a meeting, or you're meeting colleagues or friends at a meeting, you can talk about that. You can just pick through things. And there's an evolution of brainstorming happens when you're in person. Yeah, this is Vicki. I totally agree. You have, like you were saying, you have an idea or a thought that you want to bring forward, but maybe you don't have all the words at the moment. And if you can have that hallway conversation or over lunch and say, Hey, I was thinking about this. What do you think? It helps you to talk through it and get to what your idea is and provides additional support to you for that. And maybe that person then joins in that conversation because they were also thinking something along those lines. So I think that the in-person really stimulates that conversation. Great. And speaking about those interactions, it'd be wonderful to hear from you all, If you could share a moment in a convening that really left an impression on you. I think about one of the first federal meetings that I went to, and there was a lot of discussion about policy and there were decisions being made, and there were families there in the audience, and the convening that stood out to me was not what was happening at that table that was being recorded, but what was happening outside of that room with parents going outside and huddling together and really saying, We really need to get our point across in a different way. This isn't working for us. And to really share both strategies and also those frustrations. So just wondering if either of you have had an an impression left upon you after a convening you've been a part of? Yeah, this is Vicki. I think for me, around 20 years ago, I got involved in an organization that supported families, and I went to the first conference. And during that conference, it was a small grouping, so it was more of an intimate group. But I was sitting there thinking, Why am I here? What am I bringing to And what am I doing here? I can't even repeat the mission and vision of this organization without a cheat sheet. I didn't consider myself a family leader, and we talk about that a lot at Expecting Health. And so what's interesting about that is throughout the years, the last 20 years, someone had taken a picture of me with another gal that I was with. And over the years, this picture kept coming up in PowerPoint presentations of us. And it was like, when I see it now, I'm like, of course you are a family leader. But at that time, in that setting, I was new at this and wasn't comfortable even telling my story in a group. And so I think that we've talked about in other sessions today, talking about getting that experience and getting the opportunity to talk with each other one on one and in a virtual setting, that doesn't happen. Yeah, I love that, Vicki. I actually have two examples that come to my mind. And the first one that I'll share, we're talking right now about convenings being a one-time thing. I actually think it's important to remember that convenings can be over an extended period of time and multiple touch points. And some of the work that we've done at Expecting Health, we've, again, been very intentional to bring together family leaders of different backgrounds and different experiences, some in newborn screening, some in rare disease, some with genetic conditions. And so in all of these different ways that we've brought families together, we've done that in a really intentional extended period of time. One of the examples that comes to my mind was we brought together group of newborn screening family leaders. So all of these families had different experiences in newborn screening. Some had a child that was diagnosed through newborn screening. Some were individuals themselves who were diagnosed with a condition that is on newborn screening, but they weren't diagnosed until much later in life. And others have had no experience having a diagnosis through newborn screening, but are advocates for that system. And we brought them together to convene over a 10-month period through a training program, and we met quarterly with them. And that entire experience just left me truly in awe and inspired because with each meeting that group had together, we all walked away with something new, something shared, and something learned. So while the purpose of coming together was newborn screening, and that was the same for everyone, everyone had such different experiences and expectations at the beginning of that program. But when we We ended and we all walked away, the unanimous and overwhelming feeling was that we came into this knowing our condition or our experience really well, but we left with such a deeper understanding of newborn screening and what family leaders and family's experience in that system. So to me, that convening with intent and over a long period of time really, really stood out to me. Yeah, this is Vicki. That's a great example, Marianna. And I think on The unintended activity that happened from that was that the people that came together didn't really know each other before that, and they have now built lifelong relationships. And it wasn't Those wouldn't have happened if the event hadn't taken place in person. Yeah, totally agree. And I think if they were here, they would say the same thing as well. And it goes back to that original question, Natasha, that you asked is, what is convening? And it's really important to think about what is our purpose of convening. And again, for me, it's about that connection. When you have that shared connection and you're building that shared connection through whatever a convening might look like, At the end of that, you walk away with that shared, just that shared connection, that shared vision. Yeah. And that really shows the difference between bringing people together for a meeting and really a convening. And I think about that when we have our steering committee meetings, and we really encourage people to share with each other. And the way we build it out is that there's a lot of time in the agenda for conversation, even to the point where sometimes people say, Is this what you want? And we say, Yes, we want you all to be engaging with each other. It's not just a report out about our data, but it's really about having this multidisciplinary group of people share with each other and share things from a perspective of, Well, this is where these policies are making sense, all the way to, I think, one of our most famous Steering Committee convenings when we found out 20% of our Steering Committee played the flute. Something that was so random, but really connected people and bonded people with each other, that it was just that really great opportunity. And then, like you said, Vicki, to have those more longer term relationships really built out of that opportunity to bring people together. So really agree with that. There's one other example that's completely different. So that's why I bring this up that comes to my mind as well. And this one was at a meeting. So thinking more on a very specific topic and things of that nature. And so at this particular meeting that I was attending, there were, again, a group of family leaders that had created a simulation of what being a family leader in newborn screening looks like and feels like. When I say simulation, what I mean by that is that they actually had created a case scenario and had people in the audience read out snippets from that case scenario to really play out and emulate what a family goes through, to share their story, and to be invited into a health system to participate as a family leader in a meeting that they're having. And it blew the room away. It was 15 different scripted experiences, and it just really brought a reality to what a family might experience and everybody in that room had open eyes and like, Oh, my goodness, I never thought about it that way. And so it was just such a tangible way of teaching and sharing that experience that in leaving that meeting, we have since taken that same approach and used that similar model to create more specific examples or scenarios in some of the work that we're doing and have facilitated meetings in that same way because it was just so powerful. Marianna, That's a great example. Hearing all of these examples, it really makes me think of all the times we have been asked to cut the budget to do a convening and ask the question, Well, can't that just be a Zoom or can't you just do that virtually? And us then having to either write back and say why it's so important for people to come together, including, and I don't know if this is the case, this is a bit of a hypothesis, but I think particularly when it's families coming together, it's not seen as a training or something that's needed for professional reasons. So it can be more relaxed, which then means it can be more virtual. And so I just think sharing some strategies or ways that we try to, I don't want to say avoid that, but build the case of why, particularly for families and family leaders, coming together and meeting each other is so important and is so critical and can really have a strong impact beyond just certain numbers. So just opening that up to both of you. I completely agree. What is it; we've been doing this for a long time. I think we talked in other sessions about just helping others understand the importance of this face-to-face, and how do we do that when budgets and financials and travel budgets come into the conversation. I think that this whole convening in person is part of movement building and to be able to do that together with, like I said in the beginning, kindred spirits to push this work forward that we're doing, that it's just not feasible to get to the depth if we're not in person. Yeah, I agree, Vicki. And I'll also add, I think we did do this. We did try to cut budgets. And by we, I truly mean everybody during COVID. We were all forced, whether it was a budget cut or not, to not meet in person. And I think that we all collectively felt the impacts of that and saw that, yes, can it be done? Sure. But in my mind, then it becomes more of a checkbox, and it really loses that true meaning and what we're really trying to accomplish with these convenings in the way that we're describing them. So sure, can you cut a budget and have a virtual meeting and get people together? Yes. But what you're going to get is information sharing. You're not going to have a shared vision, you're not going to have a connection, and you're not going to have the depth that truly can change and influence systems. If we continue and are willing to invest, and I see it as an investment in these types of convenings, we are seeing that the outputs of that are what ultimately make the changes. We've had a family leadership meeting that we held in DC. Vicki can speak more to that. We've seen that the outcome and the initial outcome started small as some ideas for a survey, and that has since grown to a survey that was developed, implemented, sent out, and now we have a pretty great set of insights and data from families on how to improve and change systems. That would not have happened in the same way if that meeting would have happened virtually. It just wouldn't have. So I think, sure, we can try, but I think the end result will not be as powerful as it would be if it were in person. This is Vicki. Yeah, that's exactly right, Marianna. And I think also what happened during COVID is that if there were a convening and people knew each other well prior to COVID, that they could go forward a little easier. But it was harder for new people to come into that convening because they didn't have that personal relationship or personal connection that everyone else in the group had. So I think that made it harder. But, yeah, great conversation. Yeah, that's a really great point, Vicki. And I think, particularly, that piece about, yes, you have people who maybe have met before and have those ongoing relationships. But what about people who are just getting in? Every day, we have someone who is, whether they expected it or not, now more involved in the health care system, have to navigate that because of themselves or their child, or another family member, and really needing those on-ramps. And sometimes, how often have we been to a meeting and we've seen a family and someone say, Oh, this is my first meeting, but I knew I had to come here. I don't know what I'm supposed to do, but I knew my first step was to be here. I think that's a really great point. So as we bring this convening to a close, first, I want to say thank you to both of you for sharing so much and really just see if there are any other closing thoughts. This is Vicki. I think that we just need to keep pushing forward this idea of convening and being able to make progress. If we're discussing an issue that we're trying to solve, that being in person with each other and being able to build those relationships, that it's vital to the success and outcome of whatever where the topic is we're discussing. Totally agree. Yeah, I think the thing that I'd love to leave as encouragement and as a way to wrap up, too, is that convening doesn't have to be hard. I think so often we feel like that's a really big thing to do because, again, we equate it to a meeting or, like I said earlier, a long period of time with multiple touch points. It is those things, and it does take time and investment, but that doesn't make it hard. I would just encourage people that the more we can convene, even if starting small, again, the greater the chances are that we will have those collective voices, we will find that shared vision, and we will be able to influence and change all of the systems that we're working within. If you're interested in learning more about convening and understanding at a at a deeper level what we're talking about, we encourage you to reach out to us at Expecting Health. We'd be happy to think about ways that we can bring groups together and share that vision. Great. Well, thank you to both of you for sharing all of the strategies and approaches and really the importance of convening and bringing people together. I really appreciate you sharing all of your insights and really for the work that you do with families and for the betterment of our healthcare system. 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.