当德克萨斯州的长期1型道格·博斯(Doug Boss)首次开始探索自己动手的闭环糖尿病技术时,他没有很高的期望。作为一个自雇的IT分析师,这位30年的T1开始修补自己的“人造胰腺”,就像一个小小的爱好项目,以了解糖尿病社区中其他精通技术的人在这些AP算法上所做的工作。
老板说,他的实验灵感之所以出现,是因为像许多T1一样,他“连续20年没有连续五个不间断的睡眠。”但是到2月中旬,只有一周的循环,老板被卖掉了。他能够整夜都没有葡萄糖高和低点,每天早晨在15点100 mg/dl的时间内醒来,而无需进行就寝时间BG检查和他历史上依赖的胰岛素校正。
“技术是改变游戏规则的和令人惊讶,”他says. “It’s good enough that it makes me want to slap the FDA and (commercial pump) industry because a group of volunteers has come up with this system that works so much better than anything else out there.”
这是一个所谓的“做自己动手封闭的循环”的故事,创建并使用自制的人造胰腺设备,这些设备对初学者来说,当然必须听起来像是疯狂的科学家东西,减去白色外套。这些作品结合了传统的胰岛素泵,连续的葡萄糖监测器(CGM),无线通信棒和带有算法的迷你计算机,以指挥泵,以基于葡萄糖水平提供胰岛素的微量胰岛素。
老板远非独自一人,因为这种“循环”趋势已经国际化,并且随着糖尿病社区中越来越多的人拥抱这一趋势,而不是等待行业发展和商业化自己的产品。
#用于改善糖尿病工具的华丽果酱
实际上,向前充电和创建这些自制系统的整个运动被称为#wearenotwaiting,是在糖尿病自己的首先D-DATA交换事件早在2013年。
在Medtronic发起了第一个商业生产之前很久部分闭环系统,有些人悄悄地使用自己的DIY技术离网。当辉煌的达娜·刘易斯(Dana Lewis)和斯科特·莱布朗(Scott Leibrand)公开他们自己做胰腺系统(DIYPS)并开始与世界分享这个概念。
最新数据表明,今天,全球有600多个人正在使用三种主要类型的自制闭环系统之一,这就是实际上所知。该数字不断增长,创建这些小工具的选项数量也在增长。
And yes, it’s making a huge difference.
“我认为自己动手的AP和更广泛的#WearenotWaiting运动在许多方面都至关重要。”哈米什crocket,新西兰怀卡托大学的1型本人和高级讲师。他的研究研究了患有慢性疾病的人们如何学习自我管理以及技术的作用。他提交了关于今年夏天大型ADA会议的封闭循环系统学习挑战的摘要。
“这项DIY创新是由患者驱动和以患者为中心的,它的重点是可能的,而不是有利可图的。因此,它使创新朝着不同的方向和基于行业的创新速度不同。” Crocket说。
组装闭环
Of course, as you might have guessed given this is a DIY project, there’s some assembly required.
如在循环Facebook页面,这种类型的系统不是整体上可以购买的,而是requires work to install, support to use and equipment to purchase. They caution: “If you want a perfect system, this is not for you.”
对于老板,他首先阅读基层开源技术计划开放式,,,,环形和Androidaps,,,,which all provide guidance for people who want to build their own systems using off-the-shelf components. There are different versions that work specifically with either iOS or Android platforms, and vary based on what you prefer to carry around with you.
OpenAPS网站提供了说明和建议,可作为用户共享经验和想法的平台,但不会创建或出售系统。这些DIY构建者被称为每个“ Looper”,都是他或她自己的。据老板说,他花了大约八个星期的时间来收集他的爱好项目所需的所有信息和设备。然而,他仅仅一天就完成了最后的集会和初始编程!
He purchased a thumbnail-sized computer module online and scored an old 2004-era Medtronic insulin pump from his second cousin.
老板回忆说:“我根据网络上的开源食谱组装了这些作品。”“它涉及在爱迪生计算机上安装Linux版本,然后我添加了OpenAPS程序和封闭的循环算法,并设置了一些基本设置。”
这使得听起来比实际要简单得多。实际上,老板承认:“设置很痛苦”,“很多要学习”,他在保持所有组件互相“交谈”方面存在一些问题。
尽管在网上有大量的文档可以指导新的循环器,但据老板说,“这并不容易iPhone。”他建议,很可能会建议任何认为他或她自己是技术白痴的人,要考虑其他选择之一。他说他选择了OpenAPS,因为“我使用Android手机,出于多种原因,它最适合我。它需要更少的硬件才能携带,并且似乎是最好的选择。”
但是,尽管有头痛和一些持续的调整,但在一周之内,他说,他在自己的自制闭环泵系统中被完全出售,并获得了回报。“我不再像以前那样进行任何(胰岛素)校正。在大多数情况下,我不必这样做,因为只要我在计算和进入碳水化合物方面做得不错,钻机就可以使我足够接近目标。”
所需的成本,供应和技能
在过去,所有道路都导致了罗马,但没有一条路导致循环。每个系统都是由其佩戴者单独创建的,而OpenAPS网站估计创建系统的成本为150美元,但对于Boss来说,这是更多。
他说:“总而言之,我很容易在零件和零件上花费了1,200至1,700美元。”
Spare?
是老板系统核心的爱迪生计算机已经停止,因此老板搜寻了互联网,并提出了两个备件。但这并不是他舒适水平所需要的唯一备用。
Currently, OpenAPS will only work witholderMedtronic Pumps(因为可以砍掉那些无线电通信信号),这对Boss具有讽刺意味,因为他从未正式拥有该品牌。同时自愿参加JDRFmany years ago, Boss describes he was so upset by the “lies” he heard MiniMed sales reps telling to the parents of newly diagnosed kids that he “vowed to never support the company.”
Boss’s cousin set him up with an older pump, but once he was up and running on Looping he realized that he needed a backup of this part of the system as well. So he purchased another pump from a fellow Looper who had a spareable spare. That left him with the need for appropriate pump supplies, which Boss is able to find in pay-it-forward groups online and from third-party distributors, so he doesn’t have to purchase from Medtronic — keeping his vow not to be their customer. Boss suggests Loopers ask their doctors for a generic pump supply subscription, and he also points to the customer support he’s gotten from DME supplierPumps It。
一旦起身并循环,老板为他的钻机建造了一个Alexa应用程序,以便说话亚马逊技术可以告诉他泵和系统的状态。
Boss notes: “It’s cool that I can just say: ‘Alexa, ask the pump how am I doing?’ and she responds with my BG, if it’s steady, rising or falling, how many minutes ago that was, and whether the rig has me on a temp basal, and if so how long, and how many units of IOB (insulin on board) I have.”
Boss says he originally called his pump “Smart Pump Two,” but that Alexa “had trouble understanding two words,” so he’s programed the App to recognize it simply as “The Pump.”
While some novice DIYers have IT-related careers or hobbies that make them familiar with this stuff and help in building their systems (like Boss), others have a steeper learning curves because they don’t have that background experience. Sometimes these novices may face challenges in getting support from the community, if they don’t understand the IT lingo or aren’t as connected to developer tools and resources in trying to build and trouble-shoot their systems. That can be a challenge, but the giving back spirit in the DIY community often helps work around that issue.
更好的睡眠,更少的推注
老板说,这一切都非常值得在时间和金钱上进行投资。“对我来说,关于糖尿病的最大事情是它的持续性质……这可能会在精神上耗尽……我仍然很惊讶我整夜都睡不着,没有Dexcom CGM的BG警报。我要为睡个好觉付出什么付费?”
老板还挠痒痒,他不再需要担心方波或临时费率,而且他的饭菜选择要比以前更大。他的钻机简化了他的生活,使他可以吃曾经更具挑战性推注的饭菜,即使是复杂的正方形和扩展的大满贯。
Boss说,除了需要每18小时重新充电一次DIY系统之外,日常操作很简单。该设备本身足够小,可以随身携带,他可以从智能手机中输入碳水化合物。
“因此,在过去一周左右的时间里,我不必直接在泵上输入任何内容。例如,我现在要做的就是按下手机上的一个按钮来告诉Nightscoutthat I ate 30 grams of carbs. The rig picks that up in a few minutes and begins to deliver insulin to adjust for it,” he explains.
老板说,他的“小爱好项目”与循环有关,使他成为了真正的传教士,以使其他患者采用这种技术,并使该行业加入。
DIY Driving Industry
“The more the FDA and major pump companies see people turning to this, the more they might have to embrace the advantages,” Boss notes, adding that as a Tandem Diabetes shareholder himself, he plans to contact investor relations and encourage Tandem to look at these options. “My brand newt:纤细的x2is like a glass syringe with a dull needle, compared to this OpenAPS technology.”
正是这种思维方式导致了至少一家国际泵公司Dana RS泵送制造商总部位于韩国to actually weave open-source connection capabilities into their newest products, in the spirit of embracing #WeAreNotWaiting.
That shows the influence of DIY movement and OpenAPS, specifically.
D-Peep和研究人员Crocke说:“总的来说,在多个方面进行创新是为了使所有受糖尿病的人受益。”他甚至正在建立自己的自制闭环系统。“ DIY社区表明,受糖尿病影响的人们为如何管理疾病做出了积极贡献的巨大潜力。如果可以找到与患者社区互动的正确方法,那么这种潜力就可以借鉴。”
Crocket notes that the movement has quickly grown from a small group of “user-developers” to include a much broader community of users, who don’t directly contribute to developing the underlying code or tech configurations. That shows an incredible market and need for these systems — that even many non-tech-tinkerers are willing to go great lengths to become Loopers.
“My hope is that industry and regulators recognize that a one-size-fits-all approach does not meet the varied needs of the community,” Crocket says. “I also hope that industry and regulators no longer view the community as passive recipients of treatment, care and technology, but as active and creative participants in treatment, care and technology.”
阿们。