Data

In this episode, host Vicki Hunting and guests Bailey Perez and Natasha Bonhomme explore the pivotal role of data and the importance of asking the right questions to drive system change. By leveraging accurate data and insightful inquiry, we can uncover root causes and design effective, sustainable solutions. Join us as we discuss how data-driven approaches are transforming systems and creating impactful 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 healthcare delivery system. I'm thrilled to kick off season two, 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 healthcare, 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. Hello and welcome today to the next installment of Linked Together. Today we're going to talk about data; in this world that we're living in today and its profound impact on us. With me today is Bailey Perez and Natasha Bonhomme. You know, we're going to talk about data and about it being more than just numbers and statistics. It is about the digital age that we live in today and how much it's changed in the last, you know, how many years. Data alone is meaningless, and once you analyze and interpret it, it leads to information that is filled with meaning. So today we're going to talk about what is data. We're going to talk about why it's important, what do we do with it and dig into that a little more. So, Bailey, do you want to kick us off? Sure. So data in itself, like Vicki was saying, can just be numbers or statistics, but it's more important of how you use it and what the purpose of it is. So at Expecting Health in the Family Center, we use data every day for a number of different things, is we use it to track what we're doing, to track our social media. In the family engagement episode, we talked about how we use data in the Family leader survey, and we'll talk throughout this episode on what we plan and hope for that data to be used for in the future from this survey. Natasha, what brings you to this conversation today? Yeah, data is so important because it really is the building blocks for us to be able to tell our stories right, whether they are personal stories or organizational stories or the stories of an entire movement. We really need to be able to know exactly what we're talking about and to be able to pull examples, as Bailey said, pull numbers, statistics, and really be able to show how our work builds upon itself and how important it is to be able to quantify and qualify the work that we're doing and the impact that we're able to make. And we do that by using data. And data can be a lot of different things. And it really, like I said, really builds upon itself. Great point. You know, I'm kind of a quote person. So I like quotes. So there are a couple of quotes. W. Edwards Deming, who's the quote father of quality improvement, says that without data, you're just another person with an opinion. But on the other side of that, Brené Brown has a quote that talks to that maybe stories are just data with a soul. And so having that, the numbers and the statistics, the qualitative and the quantitative, really helps us to understand and get the information that we need from the data. You know, there's different kinds of data. There's data that you have, that you gather and collect, that when matched up with someone else's data that's similar, really helps you expand the picture. So thinking of data, not just what you collect and what you use in your day to day, but what else is out there that's in the system or the area that you're working in that you can use? I think also, you know, there's a, we don't typically get into big data, but that is a thing. There's a lot of opportunities for big data. But data doesn't have to always be big, start small, think big, and work towards getting the data that you need and understand the data that you have. Yeah, I think that's a really important point because so often we think, especially now, this idea of, well, to have data, you have to have a database and you have to have lots of cells filled out with numbers and formulas and all of that. And it really is just moving from that anecdote, that one thing that you saw that you may think, huh, that's interesting into something a little bit more organized into that more of a data format, if you will, to start to again build that story. But it does, it always starts small, even if the end product is a big database or something even bigger than you could have thought of when you were just starting to collect that information. And we've seen that with different patient advocacy groups who just start a list and they didn't realize that that list that they were starting years down the road, can then help them build out clinical trials and other larger programs. Yeah. And like Natasha was saying is in addition to building out lists and something like that is a lot of people get stuck on when collecting data is the outcome and significance. So, like for, say, the family leader survey or other different surveys like that, a lot of time researchers are really stuck on that significance of so what's the purpose is, well, these numbers didn't turn out to be significant, so it doesn't really matter. But that's not the point is just because something's not statistically significant doesn't mean that there's not still a story happening in that data. Absolutely, Bailey, that's an excellent point. So that kind of gets, it moves us off into another area that we wanted to talk about, about why is it important, what's the purpose of it? And we've talked a little bit about that. It helps us to compare and analyze and like Natasha said earlier, to tell our story. Any other thoughts about why it's important or the purpose of collecting data? Yeah, so this is, Bailey, is like what we kind of said at the beginning is it really helps solidify your ideas, also is at Expecting Health, we've seen a lot of time is we're trying to put out reports or we're trying to really prove a point to something, but because there's not published data out there or published literature out there supporting our idea, we can only say that it's what we've seen. And so that's kind of what we were trying to get at with the family leader survey is put some numbers to our thoughts and what we've seen, so that way we can push that further and get some things published and move that ball. So hopefully one day other people, when they're trying to get funding for family engagement, they can, because they have that data to back them up and support their ideas. Yeah, this is Vicki. Absolutely, Bailey. I mean, it's important not only to our organization, but funders. If you're going to a funder, pretty much you have to provide some sort of data to back up what you're doing. So businesses, government entities, researchers, all of those other organizations, they want to see data, too. So having that information of your own is really important. Yeah, this is Natasha. And building off of what you both said, I really couldn't agree with you more. And the fact is, we are in an age where there is so much noise, there's just so much out there, there's so many different people, groups, organizations who are trying to get everyone's attention that it can feel like you're competing with the world. And when you have actual data and organized data that can help support your story or the impact you're looking for, it can really set you apart. And so really being able to have that, and again, back to what we said, it doesn't have to be big data or a lot, but if it's data that you can connect to the impact you currently have or you're aiming to have, that really can help sort your mission out from all of the noise that's out there. Excellent point. So let's kind of move into, you know, why we, what we, what do we do with it? You know, we gather it, we track it, we analyze it, we use it to inform. So thinking about what we, what we do with it, what we've done with it at Expecting Health, we've spent some time looking at our social media, and the think big, start small around social media data exponentially grows. So if you have five different social media applications that you're using and each of those have five different pieces of data that you're looking at, you're now looking at over 25 data points that you need to track. And so thinking about what's the most important, are you looking at, are you trying to figure out when people are looking at your postings, are you trying to figure out how they're reacting to it? Are they interacting with it? So, you know, thinking about having a plan up front about what you want with your social media, that's going to be helpful. And, you know, it's a process. Write it down. What is the frequency that you gather this data? You know, are you looking for demographics? Are you looking to see, to understand what time of day and day of week you should be doing your postings? So that's just one, one area. You have website analytics. So you add that to the mix. You have webinars that you do that you gather data around that. So I think it's just thinking about what it is you need to know for your organization and begin with that. Yeah. And like, this is Bailey. So, like, what Vicki was saying is some of the things that we do at Expecting Health and the Family Center is tracking that social media and tracking those webinars is especially the webinars on a community engagement front, it's really important to try and figure out which topics are getting the most popularity and the most hits and what time of day are people most available. We also started putting our webinars on YouTube, and we noticed that we get a lot of volume on our YouTube videos of those recorded webinars. So tracking those and seeing that, yes, while some people are able to attend live, a lot of people aren't just because the webinars may be in the middle of the day or they have other things going on. So sending out those links after the webinar, once the YouTube video has been posted, really allows people who really wanted to attend the webinar but couldn't to then go ahead and watch it themselves and then share it within their networks. That's a great point, Bailey. One thing that I've really noticed when looking at all of the data, it's as you said, Vicki, it can really multiply very quickly, and then you can kind of get lost in all the data and you have to go back to, why are we collecting this? What's important? What do we want to see? And we've done that at Expecting Health. Bailey was just talking about the webinars, and we've looked, and sometimes there are webinars that have a high number of registrants and a lot of people online, but not a lot of conversation, and then others that may have smaller numbers, but the conversation has been so rich and really fuels the next project that we're going to do. So for us, really thinking about the different types of data we want to capture. So, of course, there's quantitative and the numbers and the things you can put into an Excel spreadsheet, but we also want to look at the feel and the qualitative data there and thinking about how we want to capture that. At the end of the day, data is really meant to reflect value and what you value as an organization or as someone who's working on a project. So we always try to come back to that, especially as we get more and more data points. Absolutely. As we come to the end of our conversation, are there some closing thoughts that you have about our conversation today? Yeah, this is Natasha, and this has been a really great conversation and kind of a foundation setting for when people are thinking about what kind of data they want or data they need. One thing that really stood out to me is so often people think of data as their proprietary information and something they need to guard and use competitively. But I've seen so many opportunities where groups have come together and shared their data, you know, the good, the bad, the ugly of it, and really been able to move their communities forward because they came together, shared the data that they had and were able to build from there. And fill, you know, each other's gaps or, you know, where, where one organization was lacking, another actually had the information and vice versa. So I just encourage people to think about their data not just as something as competitive, but something to be collaborative around. Yeah. And this is, Bailey is similar to what Natasha was saying, is really using the data to be collaborative. But then also, don't just focus purely on significance. If you're a researcher or you're trying to publish something, don't just focus on statistical significance. All data can be significant so try and step away from that statistical significance aspect and really just focus on trying to tell your story. Yeah, Bailey, that's an excellent point. I think too, we talked about, you know, think big but start small. You can start with what you have. It's just as easy as counting how many people came and then you build on that. So I thank you, Bailey and Natasha, for joining us today on this conversation about data in this linked together session. Thank you. 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.