拯救救生故事用安吉装饰提出了医疗创新

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Katie:我们的客人今天是安吉拉装饰。她是联合创始人和行动联合主任，是一个国家协作学习网络，在儿科患者中进行心力衰竭进行研究。安吉，我今天很感激你在播客上。

Angela:谢谢，凯蒂。

Katie:我们有机会一起工作一点点。你能告诉我们更多关于你自己的信息吗？告诉我你在辛辛那提儿童的工作和行动。

Angela:是的当然。我是一名心脏强烈主义者，所以我训练了儿科，心脏病学和ICU护理。然后七年前左右，我对儿童的先进心力衰竭感兴趣，特别是他们如何支持不同的设备，所以医疗管理，还可以使用不同的设备。在过去的七年左右，我一直在辛辛那提儿童的心室辅助设备计划和人工心脏计划，用于儿童儿童儿童和成人先天性心脏病患者。有了这个，这就是我对起动行动感兴趣的方式。

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Katie:And ACTION, why was ACTION formed? Why was it necessary?

Angela:儿科心脏衰竭护理与成人心力衰竭感到不同。心力衰竭护理在成人世界非常先进，正在研究大量的药物，用于成人心力衰竭的设备。显然，它是成人患者的一名杀手之一。但对于儿科学来说，我们对心灵失败的儿童没有良好的疗法。我们通常做的是我们在成年人脚步，所以我们使用成人医学照顾我们的孩子，但我们没有任何研究。通常没有临床试验。原因是因为没有足够的孩子学习或儿童也变得如此多样化......他们的心脏衰竭的尺寸和病因差异很大。

Angela:我们最终为这些孩子做了什么是我们，正如我所说，我们有点从成年场然后用于药物，然后还用于设备。So if a child has end stage heart failure and they don’t have enough blood going out to their body, they may get an adult device, which is made for an adult sized patient and it will be put in a really kind of innovative fashion surgically where we try to fit these larger devices into children. So it is a disserviced patient population-

Katie:当然。

Angela:......这真的是我们开始行动的原因，因为我们觉得这种患者人口没有得到足够的关注。

Katie:绝对地。Really, one health system in one region won’t see very many patients with these types of problems. Right? So it was critical to create a larger collaboration, a consortium around this particular area of medicine.

Angela:正确的。So really that therapy for kids only ramped up in the last five to seven years. What we found ourselves doing is calling each other in the middle of the night, different centers because our experience alone was so limited. Some centers only do one device or take care of one end stage heart failure patient per year, and some centers take care of 30 kids that need devices. We really found ourselves relying on each other to learn more. So instead of just having kind of random text messages and group texts, we decided, “Okay, well let’s collaborate together and figure out how we can do this in a better fashion.” That was the start of… Or one of the reasons that ACTION started. The other thing that happened was about five years ago, we’ve collected all the data on some of our babies that were on devices and we found that the stroke rate was very high and we wanted to make that better.

Katie:绝对地。Something I know about ACTION thanks to our work at Untold and collaborating with you is that it’s grown rapidly over the last-

Angela:是的。

Katie:…许多年。你能告诉我们更多关于......我们有点听说有关行动的原始故事。您能否告诉我们更多关于如何在卫生系统级别获得的信息，然后是如何脱离的？为什么你认为这已经能够发生了？

Angela:当然。我们开始使用五个中心，共同努力减少这些儿童中的行程率。我们只是一个真正想要这样做的投资组。我永远不会忘记2017年的第一次会议，我们只坐在围绕试图弄清楚我们要做什么来解决这个问题。然后很快，人们听到了，并对修复这个问题同样感兴趣。所以我们现在在两年半的中心40个中心。We laugh sometimes and say, “We really didn’t mean to grow that fast,” but we felt that every child in the United States and North America, actually, not to mention we do have some international partners now, but in North America should have the same care. So what we felt very strongly is not to ever exclude anybody. We kind of opened the doors to anyone who wanted to be involved. With that, came a lot of responsibility for the centers and they stepped up to do it. There was obviously money involved, but also there was lots of manpower.

Katie:是的。

Angela:数据收集和更改实践和数据使用协议以及IRB和所有这些都随之而来，以及这些患者的所有提供商我们都投入了这一目标。

Katie:在我们所有的研究创新的故事t Untold, one of the story patterns that we discovered wasthe innovation that emerges due to a recurring problem; something that just feels unsolvable at the beginning, but through the perspiration and the commitment and the passion of the innovator, breakthrough can happen.I think this is such a beautiful example of how that can happen through collaboration and thinking much more broadly than just at the coworker level or even just the health system level. You’re looking at across the globe and thinking, how can we pull together best practices and work together to create innovation? The stories that are coming out of ACTION are so impactful because it’s really changing the lives and the outcomes for children and families.

Angela:I think that’s true. I think one really great example I like to share is that in normal academic medicine, we will write up a series of patients in pediatrics because we can’t often do trials because we don’t have the volume-

Katie:当然。

Angela: .。。or we will try to share a kind of anecdote and there’s case studies and that kind of thing and it takes us a long time to change practice because of that. With ACTION, what we’ve done by using each other’s experience and putting our data together, we have been able to change practice very quickly. So as I said, we started this in 2017. In December of 2018, all United States’s children on the Berlin Heart, which is the only approved device for children, we changed their anticoagulation from heparin, which is one drug to another drug to bivalirudin. That would never happen with traditional research.

Katie:It would’ve taken too long, right?

Angela:Yeah. So we always say that it takes 17 years, which I think there is some research to show. But we used everyone’s anecdotal experience and put that together and did not necessarily wait for a podium presentation or a manuscript to get submitted and reviewed a hundred times. Instead, we just put it together outside of the normal manuscript process to come up with a plan. With that plan, everyone was able to talk through their own teams to do that and change and the results have been really great.

Katie:It’s incredible. I know that both of us are strong believers in the peer reviewed process in terms of why that’s important. However-

Angela:Yeah.

Katie:…能够创新的内愈合thcare, especially when the outcome is extremely dire and there’s an urgency, it sounds like that’s one of the reasons why the research and the data and the implementation you’ve been able to achieve has gone much more rapidly than what it could-

Angela:正确的。

Katie:......你不得不遵循一个非常严格的过程。

Angela:好吧，我们现在笑了，因为我们说它与我们通常做的事情相反，我们通常会提取所有数据并进行同行评审的手稿，就像你所说，非常重要，然后我们实施。这一次，我们撤回了所实施的数据，现在我们得到了稿件。所以它只是一个不同的时间表，但具有同样的严谨性，诚实。我们现在使用相同的稿件流程，以及我们如何使用质量改进方法。所以我们能够真正遵循这些数据，我们将这些孩子们遵循这些孩子，因为我们改变了他们的抗凝力来确保他们有良好的结果。

Katie:How has that change impacted outcomes?

Angela:在我们的上一条数据集中，我们的行程率下降了50％的下降率

Katie:哇。

Angela:......小孩，我们一直在关心心室辅助设备。在较大的孩子中，我们的行程率改善了很多。

Katie:哇。这绝对令人难以置信。我很想听到你对为什么讲故事有什么事物或在一个组织的成功中扮演的讲话或扮演什么角色。

Angela:I think storytelling is really important to something like Action and how you tell the story and the passion that you have behind it means a lot to everybody that signs on to be part of it. I do think that the passion from the providers that as we talked through why we needed to do this, that passion was just poured out of these slide presentations that we were giving to people. The other thing that we’ve really advocated for and is related to storytelling is that these devices that we’re using are not labeled for children. What happens is the adult devices go through the trial and they’re for the adults, but then we put them in children. So with that, we don’t always have the same clinical expertise from the industry and we don’t have educational materials for kids.

So as we started to tell that story and say, “How can we have devices for adults in the United States and we use those devices in children and we use them in the exact same fashion, but we aren’t able to support them the same way and we don’t have the same information and we don’t have the same education, how can that possibly be fair?” As we told that story, that story really resonated with people and regulatory bodies, as well as industry, as well as parents, as well as providers. So that’s another thing that Action is really driving forward is, how are we going to get these devices labeled for children to make sure that everyone is be一世与我们没有数字进行随机试验时相比，NG平等和公平地治疗？

Katie:That makes so much sense. I think there’s a universality to our care for children. It’s so instinctual for anyone no matter whether it’s your child who has that kind of diagnosis or it’s a child in your community or just even hearing you mentioned those numbers. I’m thinking of that particular child and those families and the providers who I’m sure, experienced so much heartache in the past before you started this collaborative and really inspired everyone to problem-solve together.

Angela:I think so, and we often say we take every child home with us in some fashion. So these children that we take care of… Usually, we’re taking care of these children for a long time. We become very close to them and their families and when the child you’re caring for has a stroke or has some adverse event or doesn’t make it, every single time that happens with these providers, it just builds another… it’s another brick that’s built into why we need to work together and why we need to make sure that every stakeholder, parents, families, industry, FDA, everyone’s working together to make it the best it could be.

Katie:绝对地。当您报告影响时，请告诉我们您使用的语言来讲述这些故事。显然，您可以分享很多个人故事，我也知道您也在做了很多数据收集和质量改进数据收集。您如何分享行动的影响？

Angela:我认为这是一个非常好的问题，真的很难在医学中回答。我认为我们在过去一直在做什么，以前有一种反思的事情是我们做了注册表报告，我们提出了论文，他们花了几年来推出。我认为这一切都很重要，但我们真正想要在行动中做的事情就会产生更实时的影响。因此，试图让我们能够让我们能够让所有人能够让父母和家人看到的各种各样的易于访问方式，以便父母和家人看到，行业看到，每个人都很快看到了数据，这是我们真正努力的事情。然后如何可视化该数据。与其他领域或非医疗保健领域相比，我们在数据可视化的医疗保健方面没有做过患者和家庭的非常好的工作。我想患者和家人甚至通过手稿数字看的付款人都很难理解。

Katie:Oh, definitely.

Angela:I think showing the impact on a website with a really nice data visualization or a real time data report showing over time how things have been changing is going to be really important to healthcare moving forward.

Katie:Something I really respect about the ACTION community is the way that you are thinking about audience and how to change the story, change the data that’s presented depending on which audience you need to inform or educate or inspire. I know that when our team came to the Action group about six months ago, I think, we did a data storytelling workshop together and we really broke down, okay, who are the different audiences who might need to see information and research and be educated around the latest insights on how to care for patients in these conditions? Also, what do parents need to know and what might a child need to know and how can you take one data point and share it across so many different types of audiences?

Katie:Something I love about what your team in particular has a capacity for is that you realize how important that is and you are thinking about how to communicate to a child versus a bedside nurse versus a provider who really needs to be able to share with families and have those sort of talking points ready and for it to be consistent. Because that’s another challenge is you’re on the cutting edge of data collection in this field, and so how do you make sure that bedside staff are as up to date with their statistics and the information that they might convey to families as the intensivists would be?

Angela:正确的。我想我们仍在努力。我们谈论几乎每天都在谈论什么 -

Katie:当然。

Angela:......当我们有很多次讨论时，我们到达的是，每个人都需要以不同的方式查看数据，并且需要以不同的方式解释。但是，如果你真的想到它，那么显示数据的最简单方法可能是每个人最适合。

Katie:是的。

Angela:因此，尽管我们认为我们想要更多详细信息作为提供者，但我可以告诉您，在我进入患者房间之前30秒内有一些非常简单的方法可以在30秒内可视化该数据可能会对我有吸引力，我可能知道更多关于我需要告诉那个家庭而不是试图阅读那一刻的稿件和数字。虽然，我认为我们确实需要通过每个患者的人口思考，但我认为无论我们做什么，我们都需要尽可能简单 -

Katie:绝对地。

Angela:......也许这两种方式都有。但简单的数据可视化，我认为对我们的领域向前迈进了非常重要。

Katie:绝对地。I guess my other question for you around that idea is what are some of the other challenges that you face within Action and is storytelling a part of the solution in some ways?

Angela:是的，讲故事是解决方案的一部分。One of the issues with moving healthcare forward and being more innovative in healthcare is there’s a lot of concern regarding risk, and rightfully so, from either HIPAA, which is obviously very important to the legal manifestations of having innovation at your hospital to data privacy issues. All of that, you have to think through for every innovative idea that comes up. So I do think that’s a challenge to ACTION and I think that storytelling is really important because no matter what legal entity you’re dealing with that day that wants you not to do something or wants you to do it in a different way.

Katie:当然。

Angela:我不希望它看起来是负的 -

Katie:正确的。

Angela:…但这是他们的工作是保护自己的stitution. Storytelling to pick up the phone and say to the legal counsel of that institution, “We are trying to get devices to children. We are not trying to disturb your data or disturb privacy. We want the FDA to have this data so that we can move this forward so that we can give kids the best care they can get.” I think that storytelling of explaining what the innovation is doing and it’s not just a way to get some academic credibility or to promote yourself, it’s a way to actually improve the care of children. Almost anyone that you get on the other side of the phone, we’ll try to work through whatever issue they’re having. So I have found that… I don’t know if that fits with storytelling, but explaining-

Katie:当然。

Angela:…the, “why?” is really important to be innovative in healthcare.

Katie:Absolutely, and you have such an important… It’s really a mission critical, “why?” that ACTION is committed to addressing. So it’s absolutely, it sounds like part of the strategy there is making sure that there is empathy and understanding for the problem and what role everyone is playing in the solution.

Angela:Yeah.

Katie:我真正尊重行动的其他事情是，您对如何教育患者及其家人和提供者的教育是非常有创造性的，因为日常提供者通常不会有这些类型的诊断和治疗计划的患者。因此，教育它们并以吸引人的方式确实是至关重要的。我喜欢你已经使用了很多创造性的媒介，我认为你继续以这种方式发展，但你已经创建了一个视频游戏和应用程序。您已经创建了动画和其他教育材料和人员视频，也可以帮助将设备利用带到生命中，帮助孩子了解“为什么我收到这个设备，这是什么感觉？”并帮助家庭决策的不同部分。我很乐意听到你的观点，你认为你认为最好的媒介努力参与家庭和提供者？

Angela:Well, I think it’s interesting to watch. We really became interested in this education piece, watching these children who are now on some life saving device or going home on a life saving device hooked up to batteries and having equipment with them, they are so good at taking care of their device. So they’re used to playing video games, they’re used to going to school and having their iPad, they’re used to doing… There’s some schools that everything is done on an iPad or a computer.

Katie:正确的。

Angela:So they’re very used to that. You hand them a book and they start basically laughing at you when you hand them a binder of papers and they look at you like, “What are we going to do with this?” It’s eye opening to see them look at you that way, that we really need to get with it and have a digital transformation of how we educate patients, especially adolescent kids. As we thought about it more, we’re like, “There’s really not that many patient populations that wouldn’t better have something on their phone to be educated than taking a binder home that is 10 pounds of paper.” So the more we thought about it, we thought, “Let’s just do everything electronic and let’s try to do everything we can as an animation.”

Angela:我们专注于我们所有的教育材料，了解更多年龄组，知道每个人都应该这样喜欢它们。当人们问我们时，“这些只是对孩子们？”我们总是说，“不。”我们说，“这些是对受到压力的父母，他们想做的最后一件事是看到一些非常严肃的视频。”如果他们可以看到一个动画的视频，谈论他们的孩子要经历的是什么以及风险是什么，至少它有点柔软。

Katie:当然。

Angela:我们确实尝试制作似乎是学校老年人的东西，但我们将尝试使用它，甚至我们的成人先天性心脏病患者，也有一些公司的利益在其成年人口中使用它。

Katie:在患者教育中可以发挥动画的作用，在患者教育中，在患者教育中越来越多，可以在患者身上发挥着越来越多的研究，帮助他们保留信息并理解它，然后通过放电指示进行跟进。它始于音频视觉实验，看看患者如何从卡通中了解更多信息而不是从书面排放指令中了解。我现在想，我们开始在患者教育内部的音频和视觉或多模式元素周围看到越来越多的研究，那里有这么多的潜力。我们在其他行业中看到它，动画被用作教育形式，而且传达信息是一种更令人难忘的方式。Especially, when you think of the stress that any hospital experience creates, let alone an incredibly life critical kind of experience, how much that could lower stress and help people feel like the information’s understandable, that they can act upon it, that there’s the next step that they can take without having to worry about all of the million steps and questions that they have.

Angela:正确的。We are really trying to use infographics to their best.

Katie:Yeah.

Angela:我想到了一个原因是我喜欢自己的信息图表。如果我可以看一些东西10秒钟并保留在那个信息图表上的东西并远离它......所以用信息图表的教导是我们对我们非常感兴趣的东西。我们拥有所有电子文件和动画和视频游戏，它显示了如何更改设备。而且，当我们提供数据时，试图用一张照片给予它的小小的碎片是我们真正努力的东西。我们有很长的方式来改变我们如何教育心力衰竭的患者，但我认为我们已经到了某个地方。

Katie:绝对地。As we wrap up, I want to ask you one more question and it’s really more of an inspiring question. What advice would you give to other innovators, especially those in medicine as they prepare to share and amplify really good ideas?

Angela:Having thought about this before, thinking through what I’ve learned is that innovation really can’t happen if you’re trying to be perfect. Oftentimes, we’ll try something and take a risk and I think you have to take a risk. If you’re trying to innovate, you can’t make every, “I,” dotted and every, “T,” crossed right there when you roll it out. You may have to try something. It may fail and you have to try again. But I really do think that in medicine, we’re so used to trying to make everything perfect because any mistake in medicine or clinical care could be life threatening. So we are perfectionists and that is what we are built to be.

它让我们走出我们的舒适区，“好的，所以现在创新并为孩子们制作这个视频游戏来弄清楚如何做他们的控制器。”好吧，当然你希望它是完美的，但你甚至不知道是否有人喜欢它。我认为这对医疗保健或至少是医生来记住，如果不是生命和死亡情景，而且正在努力创新，那么它可能值得带来风险。

Katie:绝对地。Thinking about failure narratives and the role that failure plays in the innovation process, the stakes are so high in medicine and yet, we won’t learn rapidly if we aren’t to some degree, willing to fail or have to tweak our solutions as we go.

Angela:是的是的。不，这是真的。对于心灵衰竭的儿童，如何关心它们并不总是很好的解决方案。Using all of the data that you have and all of the advice you can get from everyone in the collaborative to make the best decision possible is sometimes isn’t an innovative decision, but the alternative is just not an alternative that you want to take on, you want to try. So whether it’s in care of the child versus teaching them in a different way, versus using the data in an innovative fashion to get a device labeled, everything we do, we have to think through in this situation, what can we do? We’re going to take a risk. It may not be the perfect decision, but we have to take a risk.

Katie:绝对地。To me, the most beautiful part of what you and the ACTION community have created is conversation. You have connected to each other, you’re sharing data, you’re sharing insights, you’re there for one another. Whereas in the past, all of those decisions were happening in such a siloed way and you’ve completely transformed that through the innovation of ACTION and having it continued to grow. I wish for its continued success. Angie, thank you so much for being on the podcast.

Angela:Thank you for inviting me, Katie. Goodbye.

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