#wearenotwaiting|Annual Innovation Summit|D-Data ExChange|Patient Voices Contest
Hashtag#wearenotwaiting是糖尿病社区中人们将事情掌握在自己手中的人的集会。他们正在开发平台,应用程序和基于云的解决方案,并在需要时进行反向工程现有产品,以帮助糖尿病患者更好地利用设备和健康数据以改善结果。
#wearenotwaiting一词是在我们的有史以来第一次糖尿病DATA交换聚会2013年,在斯坦福大学,倡导者莱恩·德斯伯勒(Lane Desborough)和霍华德(Howard)试图总结糖尿病的情绪,而自己动手和企业家负责。
解决的问题是什么?
这innovation bottleneck that’s holding us back.
2014年3月,福布斯报告:
“每天都会,'数字健康对在这些条件下从根本上改变患者生活的希望继续捕捉全球想象力,工程创新和媒体头条新闻。但是,所有玫瑰色(有时令人叹为观止)的预测有一个很大的缺失链接,它被称为“数据互操作性”……”
“Simply put, it’s the lack of standards and formats for health data that’s captured electronically to work seamlessly within the life of a patient with a chronic condition (many of which are life-threatening).”
显然,这个问题尚未解决!
它是如何开始的?
如前所述,标语“我们不在等待”是小组讨论的结果非常第一个糖尿病DATA交换2013年11月在斯坦福大学。
共同主持人霍华德(Howard),泰德浦(Tidepool)首席执行官(也是D-dad),主持了诞生这个座右铭的小组讨论,然后报告了它at the2013年糖尿病创新峰会第二天 - 一组120名糖尿病领导者(患者拥护者,制药高管,FDA,ADA,JDRF,临床医生,移动健康专家等)。
“目的是使糖尿病数据更易于访问,直观和可行……我们希望将数据纳入可以帮助增加时间(葡萄糖)范围的时间,并获得更少的低点和更好的A1C的格式。”
Also integrally involved was D-Dad and Chief Engineer at Medtronic莱恩·德斯伯勒(Lane Desborough), who wrote a后续职位在Tidepool的博客上,他说的很好:
“Companies that make physical components of (the diabetes) ecosystem – sensors, pumps, smartphones, insulin, strips, cellular networks, cloud servers – will continue to survive and thrive because these elements are necessary… The system will continue to comprise three essential components: hardware, software, and wetware (humans). What will change is how – and how fast – these systems will be developed. Closed, proprietary systems will die. Open, standards-based, interoperable devices will thrive. The problem and its solution will get closer in person, space, and time.我们没有等待。“
不等待…?
涉及的人们总结了这一强大列表的运动:
#wearenotwaitingto bridge disconnected data islands.
#wearenotwaiting尽管我们的内分泌学家试图组装数据难题的脱节部分。
#wearenotwaitingfor competitors to cooperate.
#wearenotwaiting供监管机构进行监管。
#wearenotwaitingfor device manufacturers to innovate.
#wearenotwaiting供付款人付款。
#wearenotwaiting为了安心,我们患有1型糖尿病的孩子是安全的。
#wearenotwaitingto get some decent sleep for the first time in years.
#wearenotwaiting让我们的孩子能够在朋友家中安全地过夜。
#wearenotwaiting给我们的孩子有更好的机会在学校取得成功。
#wearenotwaitingfor others to decide if, when, and how we access and use data from our own bodies.
#wearenotwaiting构建专注于设计和可用性的应用程序。
#wearenotwaitingto compel device makers to publish their data protocols.
#wearenotwaiting确保患者可以使用自己的糖尿病数据。
#wearenotwaiting为了允许PWD可以选择如何看待自己的糖尿病数据,而不是被迫使用设备随附的不合格软件。
#wearenotwaitingto make it easier to get data off of devices.
#wearenotwaiting将来自世界各地的最好和最聪明的头脑汇集在一起,以帮助PWD更好。
#wearenotwaitingfor the cure.
早在2014年企业家和D-辅助Anna McCollister-Slipp告诉福布斯:
“Everybody seems to think that it’s OK to wait another two or three years for this process to play itself out. In terms of the business or policy cycles that’s the current trajectory, but for those of us who live with this data dysfunction, two or three years can make the difference between going blind or dying in our sleep. It’s purely an issue of priorities and urgency and despite glowing rhetoric to the contrary – patient needs are nowhere in sight for manufacturers or policymakers.”
值得庆幸的是,在很大程度上是由于基层#WearenotWaiting运动,时代正在变化!
谁是一些关键球员?
基层倡议Nightscout, aka CGM in the Cloudhas been a huge mover and shaker. This now-international community essentially a hacked solution allowing any user of the Dexcom CGM (continuous glucose monitor) to stream the data to show up on pretty much any device, anywhere, in real-time.
这Nightscout Community is now over 30,000 strong and represented in over 30 countries.
PWD Dana Lewis和她的伴侣Scott Leibrand通过开发D-World摇摆#openaps- 全球数百名患者现在正在使用自制的人造胰腺。达娜(Dana)已成为这项工作的名人,即使敬业的用户在其上进行了创新。
“循环” refers to adults and kids who have parents who have chosen to build closed loops for their families using these homemade technologies.
基于Palo-Alto的非营利性Tidepool也是推动者和摇动者,开发了一个基于设备的,基于云的糖尿病平台。
CGM公司Dexcom, whose technology was the catalyst for all this innovation and remains at the core, recently made a historic move by becoming the first-ever major FDA-approved medical device provider to启动公共应用程序编程接口(API)- 与大多数医学/科技公司使用的专有,封闭的数据平台相反。因此,他们实质上“打破”了与患者创新者进行行业合作的途径。
In October 2017, JDRFissued a call for open protocols在新兴的人工胰腺(AP)技术中,这意味着他们正在推动胰岛素泵公司和其他设备制造商开放源代码,并为公众免费提供代码和文档。这将使合作伙伴和独立开发人员能够以其技术为基础,并鼓励设备和数据系统的互操作性。
同样在2017年10月,FDA做出了相当革命的举动by announcing a new program to fast-track mobile health technologies. Seven of the nine companies in the pilot program are working on diabetes tech. This will pave the way for multiple innovators — even small, independent outfits — to get new medical software approved and out to patients faster.
Our糖尿病d-data交换已成长为著名的糖尿病技术创新的关键枢纽 - DIY及其他地区。
这是真正的交易,ddata是 *恰好 *应该展示出色的创新。行业和#DIY参与者是首屈一指的。有一个原因#ddatawas the birthplace of the#wearenotwaitingcommunity & movement#doc#GBDOC#T1D。谢谢@Diabetesminehttps://t.co/yZixtm0IG5
- Wes Ton(@WearenotWaiting)2018年2月7日
When’s the Next D-Data ExChange Event?
这糖尿病症D-Data Ex改变每年两次举行:六月一次,大约在美国大型糖尿病协会会议的时间和地点;在秋天,与我们在加利福尼亚北部的年度糖尿病创新峰会一起。有关特定日期和详细信息,请给我们发送电子邮件info@diabetesmine.com。
让我们知道您可能正在为开放系统进行糖尿病管理系统的努力 - 因此,我们可以将您添加到DATA Exchange及其他地区涉及的相关参与者和项目列表中。
And whatever you do, be sure to follow the community movement#wearenotwaiting在Twitter上!