Discover and read the best of Twitter Threads about #WeAreNotWaiting
Most recents (24)
🧵How can #HCP assist people who chose to use #DYIAID?
The @OPENDiabetesEU ⤵️
▶️ Katarina Braune is a co-founder
▶️ Patient-led
▶️ 2/3 of the international team live w/#T1D
▶️ #OpenSource #AID data
#ISPAD2022 #dedoc°voices #wearenotwaiting @dedocORG @ispad_org 1/n
The @OPENDiabetesEU ⤵️
▶️ Katarina Braune is a co-founder
▶️ Patient-led
▶️ 2/3 of the international team live w/#T1D
▶️ #OpenSource #AID data
#ISPAD2022 #dedoc°voices #wearenotwaiting @dedocORG @ispad_org 1/n
How can #HCP assist people who chose to use #DYIAID?
#wearenotwaiting movement ⤵️
Because DIY #ClosedLoop systems have been so life-changing for them and their kids, they decided to make it available for all.
#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 2/n
#wearenotwaiting movement ⤵️
Because DIY #ClosedLoop systems have been so life-changing for them and their kids, they decided to make it available for all.
#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 2/n
How can #HCP assist people who chose to use #DYIAID?
International consensus statement on #OpenSource automated insulin delivery ⤵️
✅ Published in @TheLancetEndo on Nov 13 2021
▶️ thelancet.com/journals/landi…
#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
International consensus statement on #OpenSource automated insulin delivery ⤵️
✅ Published in @TheLancetEndo on Nov 13 2021
▶️ thelancet.com/journals/landi…
#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
#SixOfTheBest CGMs on the same grid.
Data from an n=1 experiment.
Caveat 1: earlier grid had an error, giving readings incorrect dispersion.
Caveat 2: Libre2 data from an earlier experiment due to device failing early in this test and replacement taking 10 days.
Thread.
/1
Data from an n=1 experiment.
Caveat 1: earlier grid had an error, giving readings incorrect dispersion.
Caveat 2: Libre2 data from an earlier experiment due to device failing early in this test and replacement taking 10 days.
Thread.
/1
Calibration was done according to manufacturer directions:
Dexcom ONE & G6 - never;
Aidex - when I felt it was needed;
Glucomen Day - every 24 hours;
Medtrum Nano - Factory calibration was enabled, but calibration was done when it appeared to drift too much;
Libre2 - never.
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Dexcom ONE & G6 - never;
Aidex - when I felt it was needed;
Glucomen Day - every 24 hours;
Medtrum Nano - Factory calibration was enabled, but calibration was done when it appeared to drift too much;
Libre2 - never.
/2
Dexcom ONE and Dexcom G6 have almost identical dispersion, as you might expect given the sensor and calibration technology is identical:
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Even if you don't have diabetes, you know there's something really terrible in US diabetes treatments. Insulin - a century-old drug whose inventors refused any patents - has experienced double-digit, year-on-year price hikes (1123% between 2009-17!):
nbcnews.com/business/consu… 1/
nbcnews.com/business/consu… 1/
If you'd like an essay-formatted version of this thread to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:
pluralistic.net/2022/06/10/loo… 2/
pluralistic.net/2022/06/10/loo… 2/
Moreover, this is a uniquely American circumstance. In Canada, insulin remains affordable, which is why Americans - especially parents of kids with diabetes - form caravans and cross the northern border to buy insulin from Canadian pharmacies:
cbc.ca/news/canada/no… 3/
cbc.ca/news/canada/no… 3/
"Biographies of late bloomers...might leave us with lessons about how some people can be helped to flourish earlier—but...it will show us that some talents come to fruition differently. We should encourage a diversity of paths to success." @HenryEOliver greeneracresvaluenetwork.wordpress.com/2022/05/13/dai…
The secret world beneath our feet is mind-blowing – and the key to our planet’s future | Soil | The Guardian
theguardian.com/environment/20…
#SoilCharacteristics, #EcosystemSustainability
theguardian.com/environment/20…
#SoilCharacteristics, #EcosystemSustainability
For top-quality patient care, invest in nurses | McKinsey & Company
mckinsey.com/featured-insig…
#PatientCare, #NursingStaffs, #HealthcareSystem, #COVID19
mckinsey.com/featured-insig…
#PatientCare, #NursingStaffs, #HealthcareSystem, #COVID19
14-day comparisons! Photo 1 (2/27-3/12) is the baseline. #2 (3/13-3/26) is full #closedloop with Humalog and #DynamicISF. #3 (4/20-5/03) is full closed loop w/a 50/50 Humalog/Lyumjev mix. Best results with faster insulin. TIR gains are minimal (starting from a high baseline). 1/?
What jumps out at me are the reductions in variability. Also, the Lyumjev/Humalog results probably would have been even higher TIR and less variable had the restaurant not messed up last night, delivering basically a whole chicken rather than the 2 chicken burritos I ordered. 2/?
Common conditions in full #closedloop- basically no manual boluses. Even if a meal sent me close to 300 (16.7). Manual boluses were only applied when the loop was not running (comms failures, #CGM warmup, etc) maybe 2/week. No carb counting at all. Ate when hungry. 3/?
@BeLikeLight @RemRunner @TEDTalks @TEDx Hi Julie! I'd be happy to discuss the potential blind spots in that earnest perspective. For starters, if they talk to *doctors* all day, does that mean there's no value going to conferences where doctors speak?
It's not a snarky question. Really think about it. (cont'd)
It's not a snarky question. Really think about it. (cont'd)
@BeLikeLight @RemRunner @TEDTalks @TEDx There's a chance the implied message is "I doubt there's anything new I could learn from any patient I haven't met." That is (honestly) a sure-fire way to become out of touch and get blind-sided.
@BeLikeLight @RemRunner @TEDTalks @TEDx I'd be happy to engage in a dialog about specifics. Has this doc heard about what I call "superpatients" - patients like @Doug_Lind_Say who designed his own surgery, @HugoOC who hacks his ICD, the whole #DIYPS / #WeAreNotWaiting T1D community, or T1D pts who pre-bolus, etc?
I fuckin’ hate it when buttholes use my diabetic situation for BS political fodder.
In response to recent $35-for-insulin stuff in the US
there’s been an explosion of misinformation & willful ignorance about the ex-prez’s record.
🧵seems y’all need an expletive-laden thread…
In response to recent $35-for-insulin stuff in the US
there’s been an explosion of misinformation & willful ignorance about the ex-prez’s record.
🧵seems y’all need an expletive-laden thread…
(2)
An executive order was signed in July 2020 that wouldn’t go into effect until Jan 22, 2021.
Its stated aim was to lower insulin (& EpiPen) prices for low-income clients at FQHCs.
Cool window dressing, but it actually wouldn’t have even done that…
trumpwhitehouse.archives.gov/presidential-a…
An executive order was signed in July 2020 that wouldn’t go into effect until Jan 22, 2021.
Its stated aim was to lower insulin (& EpiPen) prices for low-income clients at FQHCs.
Cool window dressing, but it actually wouldn’t have even done that…
trumpwhitehouse.archives.gov/presidential-a…
(3)
The proposed EO rule would’ve barely budged the already “low” price of insulin for low-income community clinics.
What it really would do was:
add excessive red tape & burden to health systems
creating a reduction in services for the poverty-stricken…
web.archive.org/web/2021020119…
The proposed EO rule would’ve barely budged the already “low” price of insulin for low-income community clinics.
What it really would do was:
add excessive red tape & burden to health systems
creating a reduction in services for the poverty-stricken…
web.archive.org/web/2021020119…
[#thread] Déception à la lecture de la newsletter du @CeeD_Diabete qui paraphrase l’ANSM sur les #BouclesFermées DIY. Avec +5 ans d’expérience utilisateurs les développeurs du #DIY ont ouvert la voie aux boucles commerciales 🚀
▶️ ceed-diabete.org/blog/alerte-su…
#DIYAPS #DT1
▶️ ceed-diabete.org/blog/alerte-su…
#DIYAPS #DT1
Les #BouclesFermées commerciales ne sont pas encore disponibles en France, et le seront à un public restreint. Elles le sont depuis 2 ans dans d’autres pays. Les #DT1 ne peuvent plus attendre et construisent leur propre boucle avec du matériel marqué CE.
#WeAreNotWaiting
#WeAreNotWaiting
@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy We can dig through all the e's but people keep adding to then, as befits a social movement. More important and useful IMO are example stories. I joined a patient community as did @jfreemandaily and each found useful info that helped save us. ...
@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare is highly engaged in self awareness, self monitoring, even defining her own protocols. Each of these is the opposite of a passive disengaged patient.
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@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare Another classic is @HugoOC who very much wants all his heart's data but @Medtronic continues to stiff him. So @AliveCor empowers him and enables him to be engaged and informed.
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This is my artificial pancreas. Changed the cron job last night so it would only run between 9pm and 7am (~ while I'm asleep).
Built a tool 🙆♂️ this weekend to annotate the glucose data from @NightscoutProj, so I could build a better view of different things like exercise, alcohol, etc.
Now the graphs have a date attached to them, and the visual design has a bit more breathing space.
It's so hard to lose a friend. 💜
I miss @mjseres. It makes my throat ache and my eyes run, three days in a row, to think about the world without him.
On a scale of 1 to kindest human you've ever met...he was the kindest human you've ever met.
On a scale of 1 to kindest human you've ever met...he was the kindest human you've ever met.
When people ask for non-diabetes examples of #WeAreNotWaiting, @mjseres was the first person I talked about, and it was always an honor to help share his story. He saw a problem, designed a solution, and was building the future where more people could access better care and QOL.
Menschen mit Diabetes haben oft einen schweren Verlauf, wenn sie an #COVID-19 erkranken. Grund genug für die Diabetes-Schwerpunktpraxis, den persönlichen Kontakt auf ein Minimum zu reduzieren. Video-Sprechstunden dienen als Ersatz.(1/11)
Man kann den Kontakt halten, kann gemeinsam die BZ- oder #CGM-Werte betrachten.
ABER: Viele Patienten scheuen sich, ihre Daten in die Cloud zu stellen. Gibt es eine Alternative?(2/11)
ABER: Viele Patienten scheuen sich, ihre Daten in die Cloud zu stellen. Gibt es eine Alternative?(2/11)
Zumindest bei CGM-Geräten kann man die Daten NICHT lokal auslesen und speichern und z.B. per Mail an die Praxis zu schicken. Wenn der Medtronic-Server ausfällt — das ist nicht selten —, können meine Patienten keine Daten mit mir teilen.(3/11)
What’s #CoEpi (@CoEpiApp) open source project been up to lately? A thread with some updates & frequently asked questions we’re seeing as there is growing awareness of the options of Bluetooth-based technology to support our fight against #COVID19 (+other transmissible illnesses).
#CoEpi update - in the past week, the group has made good progress on Bluetooth and back-end development as well as further developing content and workflows for the app.
What will #CoEpi be? A mobile app-for both iOS & Android- with Bluetooth detection of nearby devices to help you identify contact with those who may have transmissible illnesses. It's designed with privacy in mind: only share symptoms if you want.See more: CoEpi.org
Our current biggest #CoEpi needs are more people who have ReactNative mobile dev experience or skills on backend (specifically: rails/postgres/heroku experience), that want to contribute at #WeAreNotWaiting speed to an open source project. If that’s you, please reach out!
The #CoEpi group has been hard at work over the last week on #CoEpi: we have folks working on backend development, MVP (prototype) development, and both UX and front-end development for our full version of #CoEpi (see vision at CoEpi.org)
#CoEpi will be an app that prompts useful, relevant notifications (such as washing hands after changing locations), and helps you track & alert - if you want - your loved ones about symptoms of a contagious illness, or alert you if you might have been exposed by a close contact.
How can you help with #CoEpi? If you’re a mobile developer (Android, iOS, or #ReactNative), please reach out. We can also use help with backend development. But if that’s not your skillset, sign up to be an early tester here: forms.gle/KRaBNx8YfpvqZB…
I had planned on remotely being with you at #ATTD2020 on my lunch break but the live streaming keeps on crashing. We actually can see/hear a lot of people before the sessions though the live goes off during the presentations 😳
#ATTD #wearenotwaiting #doc #jdrf
#ATTD #wearenotwaiting #doc #jdrf
May the @Kenes_Group help with the live streaming issues? Thanks.
Can hear Katie now 🎉 Can’t see but it doesn’t matter! Thank you @Kenes_Group for fixing the live streaming issues.
At #2019DTM Dr. Kath Barnard kicks off the DIY session pointing out that the HC community has left a gap that the DIY community is filling. #WeAreNotWaiting
#2019DTM Dr. Barnard is highlighting the lack of guidelines globally for HCPs to help the best interests of their patients, with regards to any kind (DIY or commercial APS) of tech. And also, the lack of availability of all kinds of tech worldwide.
#2019DTM “this is not about DIY or commercial, this is about people’s right to choose the technology for their life with diabetes.” - Dr. Barnard
THREAD:
(from my presentation at #DData19 regarding what we're learning in the real world with DIYAPS systems like #OpenAPS.)
(from my presentation at #DData19 regarding what we're learning in the real world with DIYAPS systems like #OpenAPS.)
First, some context - it was 5 years ago at one of the early DData meetings that @scottleibrand & I shared about the smart, louder alarm system (#DIYPS) that we had created & I had used in the last year...and what we planned to do next, like trying to close the loop. #DData19
After 36 years of type 1 diabetes (#T1D), the last year or 2 have been tougher than usual. Patterns shifting bit by bit, my old tricks not working so well anymore, hypo unawareness getting worse, lows coming out of nowhere, increasing fear of travel, fear of driving, less energy.
I started using versions of this slide at the start of my talks earlier this year. The unpredictability had started to bleed into my talks. (“Hey, this isn’t a pager, it’s a medical device. It might beep. I might need to check it. I’m not being rude. I can’t turn it off. Sorry.”)
I developed a new side effect of low blood sugar: deep despair that lingers for hours. It’s about as fun as it sounds, sweeping in for a leisurely stay on the heels of brutally disruptive out-of-nowhere lows. I already hated hypos enough.
I don’t speak in hyperbole very often, and I want to make sure that you all understand what a big deal this is for the diabetes DIY community. Everything that we’ve worked for for the last 20 years, it all changes now. #WeAreNotWaiting
Every diabetic engineer every, the day after they were diagnosed, tries to solve their (or their loved one's) diabetes with open software and open hardware. Every one. I did it in the early 90s. Someone diagnosed today will do this tomorrow. Every time.
I tried to send my blood sugar to the cloud from a PalmPilot. Every #diabetes person ever does this. Has done this. Then @NightscoutProj happened and #WeAreNotWaiting happened and we shared code and now we sit on the shoulders of people who GAVE THEIR IDEAS TO USE FOR FREE
@dmccallie @HealthPrivacy @rickybloomfield @CommonWell Oh, my dude. So "nope" on that. If provider-provider solutions were either (a) present or (b) possible as solutions, woulda happened by now. But we're still in the clutches of Capt. Click, were dropdown menus proliferate but actual data/work flows are frozen sludge /1
@dmccallie @HealthPrivacy @rickybloomfield @CommonWell Dirtiest of dirty secrets in this arena is that there's no money in interop. Duplicative processes, rabbit holes where handoffs should be, all in service of preserving ever'body's revenue flow. NO ONE wants to give up their slice of ... /2
@dmccallie @HealthPrivacy @rickybloomfield @CommonWell That almost-$4-trillion-with-a-T cash hose that continues to crush all sectors of the US economy. Outcomes suck, but shareholder value is LIT AF, FAM! It's head/desk all day long in patient-ville. And it's literally killing us. /3
The Instant, Custom, Connected Future of Medical Devices nyti.ms/2E9WeiR <- catching up on recent (fabulous) #InventHealth examples
There's something in that @nytimes story for everyone: #wearenotwaiting for innovation in diabetes tech; "smart pills" and bottles; mobility aids -- even mention of the bogeyman of device innovation: Theranos
3-D printers can create patient-specific medical devices, like knee joints, in one-fifth to one-tenth of the time that traditional custom-made devices are made (!) nyti.ms/2E9WeiR
A brief history of how the #WeAreNotWaiting hashtag came to be. (thread)
On November 15, 2013, @AmyDBMine @DiabetesMine @Tidepool_org Line co-hosted the first D-Data Exchange in a small room at @Stanford.
Line was @skrugman and @ianjorgensen's healthcare design studio - they were working with @Tidepool_org at the time and helped produce the event. That week, all of the Tidepoolers were having an offsite at my house.
