Thread by @1derfultype

🧵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

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

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

How can #HCP assist people who chose to use #DYIAID?

@OPENDiabetesEU ⤵️
✅ 48 authors from 25 countries
✅ 44 #HCPs
✅ 4 legal experts
✅ Supported by @ispad_org @IDFEuropeBXL @DTN_UK @ADCESdiabetes and other #diabetes organisations

#ISPAD2022 #dedoc°voices @dedocORG 4/n

How can #HCP assist people who chose to use #DYIAID?

#OpenSource systems ⤵️
▶️ Safe and effective
▶️ Glass ceiling of ethical evidence: RTCs + @NEJM
▶️ Real-world data > commercial systems
⬆️ #TIR
⬇️ #BG variability & lows

#ISPAD2022 #dedoc° #wearenotwaiting @dedocORG 5/n

How can #HCP assist people who chose to use #DYIAID?

Respect for the #PwD's autonomy to make informed decision about their own medical care is one of the fundamentals that we learn in the first year of medical school.
-K. Braune

#ISPAD2022 #dedoc° #wearenotwaiting @dedocORG 6/n

How can #HCP assist people who chose to use #DYIAID?

#HCPs have the responsibility to learn about all treatment options including #OpenSource systems.
-K. Braune

#ISPAD2022 #dedoc° #wearenotwaiting @dedocORG 7/n

How can #HCP assist people who chose to use #DYIAID?

✅ #transparency is key
✅ Commercial #AID systems should disclose how they operate to enable informed treatment decisions
-Katarina Braune

#ISPAD2022 #dedoc°voices #wearenotwaiting @dedocORG 8/n

How can #HCP assist people who chose to use #DYIAID?

Benefits:
✅ Availability & access
✅ Interoperability
✅ Personalisation
✅ Peer support

Limitations:
▶️ No regulatory evaluation
▶️ No commercial support though peer support is huge

#ISPAD2022 #dedoc° #wearenotwaiting 9/n

How can #HCP assist people who chose to use #DYIAID?

Safety can have a ❌meaning for #PwD, #HCP or regulator.

▶️ Risks of using #MDI/stand alone pump [my personal experience is that this is more risky]
🆚
✅ Safety of DIYAID 👇

#ISPAD2022 #dedoc° #wearenotwaiting 10/n

How can #HCP assist people who chose to use #DYIAID?

▶️ The value of real-world experience and evidence should be considered by device regulators

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #patientvoice #payitforward @dedocORG @ispad_org #wearenotwaiting 11/n

How can #HCP assist people who chose to use #DYIAID?

@friendocrino's key takeaways:
✅ Evidence is huge
✅ #OpenSource #AID studies are legion
✅ Resources are available
✅ Consider #PwD as experts

#ISPAD #ISPAD2022 #dedoc°voices @dedocORG @ispad_org #wearenotwaiting 12/n

How can #HCP assist people who chose to use #DYIAID?

'It is not about a seat at the table.
This IS the table.'
-Tim Robinson @JDRF

#ISPAD #ISPAD2022 #dedoc°voices @dedocORG @ispad_org #WeareNotWaiting #LanguageMatters #NothingAboutUsWithoutUs 13/n

How can #HCP assist people who chose to use #DYIAID? Q&A

An #HCP said it took her time to learn and asked for #OpenSource resources

▶️ The community is huge & responsive, 30,000+ on the Facebook groups. Loop and Learn provides synthesised resources

#ISPAD2022 #dedoc° 14/n

How can #HCP assist people who chose to use #DYIAID? Q&A

@TBattelino said that #PwDs actually teach his team and that this is the best way to learn.

Thank you 🙏 Real-life user experience does matter.

#ISPAD2022 #dedoc° @ATTDconf @ispad_org @dedocORG 15/n

How can #HCP assist people who chose to use #DYIAID? Q&A

#OpenSource development is ahead -@CaroGoLoop:
⬆️ #TIR
✅ Targets/devices personalisation
✅ Unannounced meal
▶️ The #DIY community is willing to share with #HCPs

#ISPAD2022 #dedoc° #WeAreNotWaiting 16/n

How can #HCP assist people who chose to use #DYIAID? Q&A

#OpenSource and commercial #AID can work together. DIY developers have actually been hired by commercial companies.
-@friendocrino

#ISPAD2022 #dedoc° #WeAreNotWaiting #NothingAboutUsWithoutUs #diabetesadvocacy 17/n

How can #HCP assist people who chose to use #DYIAID? Q&A

In some countries, where commercial systems are not available (access/cost), DIYAID is the ONLY option for #PwDs who want to use #AID.
-@kate_gajewska

🙏 Kate

#ISPAD2022 #dedoc°voices #WeAreNotWaiting 18/n

How can #HCP assist people who chose to use #DYIAID? Q&A

There is not one system for all. They're all effective whether #DIY or commercial. #PwD have a choice.
We should be thankful for DIY: they have pushed the field.
-Lauren Messer

#ISPAD2022 #dedoc° #WeAreNotWaiting 18/n

Thank you so much @friendocrino for your inspiring lecture ❤️

I got goosebumps 😅
I guess we'll have to keep demonstrating the evidence until #DIYAID is accepted as a safe and efficient option.

T H A N K Y O U 🙏

*Laurel Messer