Discover and read the best of Twitter Threads about #PatientVoice
Most recents (11)
🧵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
🧵#AI based decision support systems:
✅ Improves clinical outcomes
✅ Higher access to care
✅ Provides precision medicine
-Revital Nimri
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
✅ Improves clinical outcomes
✅ Higher access to care
✅ Provides precision medicine
-Revital Nimri
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
#AI based decision support systems:
'Is the quality of care improving?
No, it isn't.
We must do better.'
-Revital Nimri
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
'Is the quality of care improving?
No, it isn't.
We must do better.'
-Revital Nimri
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
#AI based decision support systems:
✅ Self-management tools
✅ Diagnosis, screening, prevention of #diabetes
✅ Prediction tools
✅ Clinical management
-Revital Nimri
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 3/n
✅ Self-management tools
✅ Diagnosis, screening, prevention of #diabetes
✅ Prediction tools
✅ Clinical management
-Revital Nimri
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 3/n
@lifeforachild /@ispad_org survey - shifting responsibility:
'I am an advocate because I believe that evidence should be made accessible to every stakeholder.'
-Emma Klatman ❤️
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG 1/n
'I am an advocate because I believe that evidence should be made accessible to every stakeholder.'
-Emma Klatman ❤️
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG 1/n
@lifeforachild /@ispad_org survey - shifting responsibility:
'Task-shifting & task-sharing: moving a task on from one #HCP to another & where staff from different discipline split the tasks. We are very interested in task-shifting in #T1D'
-Emma Klatman ❤️
ISPAD2022 #dedoc° 2/n
'Task-shifting & task-sharing: moving a task on from one #HCP to another & where staff from different discipline split the tasks. We are very interested in task-shifting in #T1D'
-Emma Klatman ❤️
ISPAD2022 #dedoc° 2/n
@lifeforachild /@ispad_org survey - shifting responsibility:
'We want to document the level of task-shifting and understand who from the clinical team is doing what. We established en survey in 2021 in many languages.'
-Emma Klatman ❤️
#ISPAD #ISPAD2022 #dedoc° @dedocORG 3/n
'We want to document the level of task-shifting and understand who from the clinical team is doing what. We established en survey in 2021 in many languages.'
-Emma Klatman ❤️
#ISPAD #ISPAD2022 #dedoc° @dedocORG 3/n
🧵Digital health for improving self-care and mental health in youth with T1D:
Benefits of tech:
▶️ scalable particularly in mental health interventions
▶️ reduce stigma
▶️ accessible 24/7
▶️ taylored tools
-Anna Serlachius
#ISPAD #ISPAD2022 #dedoc°@dedocORG @ispad_org 1/n
Benefits of tech:
▶️ scalable particularly in mental health interventions
▶️ reduce stigma
▶️ accessible 24/7
▶️ taylored tools
-Anna Serlachius
#ISPAD #ISPAD2022 #dedoc°@dedocORG @ispad_org 1/n
Digital health for improving self-care and mental health in youth with #T1D:
Challenges of tech:
▶️ access
▶️ literacy
▶️ security
▶️ clinicians awareness
-Anna Serlachius
#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
Challenges of tech:
▶️ access
▶️ literacy
▶️ security
▶️ clinicians awareness
-Anna Serlachius
#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
Digital health for improving self-care and mental health in youth with #T1D:
Challenges of tech:
▶️ engagement matters
▶️ make sure to include users during development
-Anna Serlachius
#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #payitforward @dedocORG @ispad_org 3/n
Challenges of tech:
▶️ engagement matters
▶️ make sure to include users during development
-Anna Serlachius
#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #payitforward @dedocORG @ispad_org 3/n
🧵Managing preschool behaviours to optimize diabetes:
Preschool challenges w/T1D - impredictability:
▶️ food intake
▶️ sleeping
▶️ activity
▶️ higher variabiilty in #insulin requirements
-Susana Patton
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice @dedocORG @ispad_org 1/n
Preschool challenges w/T1D - impredictability:
▶️ food intake
▶️ sleeping
▶️ activity
▶️ higher variabiilty in #insulin requirements
-Susana Patton
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice @dedocORG @ispad_org 1/n
Managing preschool behaviours to optimize diabetes:
Tips to take back:
▶️ safe space to talk about meal or changing sites that can bring distress and higher #BG
▶️ recognise what's going well
-Susana Patton
#ISPAD #ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org
Tips to take back:
▶️ safe space to talk about meal or changing sites that can bring distress and higher #BG
▶️ recognise what's going well
-Susana Patton
#ISPAD #ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org
Managing preschool behaviours to optimize #diabetes:
We promote physical activity because we found out that preschoolers w/T1D have less than other preschoolers.
-Susana Patton
#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org
We promote physical activity because we found out that preschoolers w/T1D have less than other preschoolers.
-Susana Patton
#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org
🧵 Sleep quality and patterns in children with #T1D:
Sleep deprivation can ⬆️ mental health issues like depression, a greater emotional response & difficulty to control emotions.
-Alice Gregory
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice #payitforward @dedocORG @ispad_org 1/n
Sleep deprivation can ⬆️ mental health issues like depression, a greater emotional response & difficulty to control emotions.
-Alice Gregory
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice #payitforward @dedocORG @ispad_org 1/n
Sleep quality and patterns in children with #T1D:
T1D is a 24/7 monitoring. It never stops at night.
Kids w/T1D have shorter sleep patterns and have poorer sleep quality.
-Alice Gregory
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice #payitforward @dedocORG @ispad_org 2/n
T1D is a 24/7 monitoring. It never stops at night.
Kids w/T1D have shorter sleep patterns and have poorer sleep quality.
-Alice Gregory
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice #payitforward @dedocORG @ispad_org 2/n
Sleep quality and patterns in children with #T1D:
Kids w/T1D have a different sleep architecture with less time in deep sleep whereas sleep is vitally important and particularly for kids w/T1D.
-A. Gregory
#ISPAD #ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
Kids w/T1D have a different sleep architecture with less time in deep sleep whereas sleep is vitally important and particularly for kids w/T1D.
-A. Gregory
#ISPAD #ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
🧵#ISPAD #dedoc° symposium:
Dedoc° started 10y ago on Twitter:
✅ Peer support
✅ Meetings outside of scientific conferences cause #PwD were not allowed in
#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
Dedoc° started 10y ago on Twitter:
✅ Peer support
✅ Meetings outside of scientific conferences cause #PwD were not allowed in
#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
#ISPAD #dedoc° symposium:
ISPAD was the 1st scientific conference that organised a Dedoc° symposium in 2021 🙏
-@tadorna
#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
ISPAD was the 1st scientific conference that organised a Dedoc° symposium in 2021 🙏
-@tadorna
#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
#ISPAD #dedoc° symposium:
Dedoc° is a platform for others to stand on - to have the #PwD voices heard 🔊
-@tadorna
#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 3/n
Dedoc° is a platform for others to stand on - to have the #PwD voices heard 🔊
-@tadorna
#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 3/n
🧵#diabetes prevention : are we on the right track?
Here are the players in the development of #T1D 👇
-M. Knip
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #patientvoice #payitforward @dedocORG @ispad_org 1/n
Here are the players in the development of #T1D 👇
-M. Knip
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #patientvoice #payitforward @dedocORG @ispad_org 1/n
#diabetes prevention : are we on the right track?
The different stages of #betaCells autoimmunity:
1⃣ Normoglycemia
2⃣ Presymptomatic dysglycemia
3⃣ Symptomatic dysglycemia
Primary prevention shld start during pregnancy.
-M. Knip
#ISPAD2022 #dedoc°voices @dedocORG @ispad_org 2/n
The different stages of #betaCells autoimmunity:
1⃣ Normoglycemia
2⃣ Presymptomatic dysglycemia
3⃣ Symptomatic dysglycemia
Primary prevention shld start during pregnancy.
-M. Knip
#ISPAD2022 #dedoc°voices @dedocORG @ispad_org 2/n
#diabetes prevention : are we on the right track?
Early life infection may be the initiator of the endotype. There is a step autoantibodies decline among those diagnosed before 7yo.
-M. Knip
#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
Early life infection may be the initiator of the endotype. There is a step autoantibodies decline among those diagnosed before 7yo.
-M. Knip
#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
Potential role of antiviral treatment in #T1D:
Pathogenesis:
1⃣ Genetic susceptibility
2⃣ Something triggers autoimmunity in the 1st years of life or later
3⃣ #BetaCell destruction
4⃣ Diagnosis
-L. Krogvold
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice @dedocORG @ispad_org 1/n
Pathogenesis:
1⃣ Genetic susceptibility
2⃣ Something triggers autoimmunity in the 1st years of life or later
3⃣ #BetaCell destruction
4⃣ Diagnosis
-L. Krogvold
#ISPAD #ISPAD2022 #dedoc°voices #patientvoice @dedocORG @ispad_org 1/n
Potential role of antiviral treatment in #T1D:
'The time trend is the best proof that there are environmental factors triggering T1D.
Heredity as well.'
-L. Krogvold
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n
'The time trend is the best proof that there are environmental factors triggering T1D.
Heredity as well.'
-L. Krogvold
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n
Potential role of antiviral treatment in #T1D:
'From the 1920s we knew that T1D was of viral origin as deaths from #diabetes in Norway correlated with the mumps pandemic.'
-L. Krogvold
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs @dedocORG @ispad_org 3/n
'From the 1920s we knew that T1D was of viral origin as deaths from #diabetes in Norway correlated with the mumps pandemic.'
-L. Krogvold
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs @dedocORG @ispad_org 3/n
The last mile for #T1D cure:
'I believe that cell therapy can be the T1D cure. We've had landmark results in the last 2y.
-L. Piemonti
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
'I believe that cell therapy can be the T1D cure. We've had landmark results in the last 2y.
-L. Piemonti
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
The last mile for #T1D cure:
'We know now that #BetaCell replacement can cure T1D. This is the #BG profile of someone who used to live with #diabetes 1y 1/2 ago.'
-L. Piemonti
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n
'We know now that #BetaCell replacement can cure T1D. This is the #BG profile of someone who used to live with #diabetes 1y 1/2 ago.'
-L. Piemonti
#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n
The last mile for #T1D cure:
'We started #BetaCell in Milan replacement in 1989. Had to wait for 30y for this procedure to be recognised.'
-L. Piemonti
Can you imagine living without the mental load & physical burden of #diabetes?
#ISPAD2022 #dedoc° @dedocORG @ispad_org 3/n
'We started #BetaCell in Milan replacement in 1989. Had to wait for 30y for this procedure to be recognised.'
-L. Piemonti
Can you imagine living without the mental load & physical burden of #diabetes?
#ISPAD2022 #dedoc° @dedocORG @ispad_org 3/n
Digitalization in Diabetes Education and Care:
'We know that autoimmunity starts way before #T1D diagnosis - if screened. We learnt that #cpeptide might not be relevant thanks to models'
-Dr A. Galderisi
#ISPAD #ISPAD2022 #dedoc°voices
#patientvoice #payitforward @dedocORG 1/n
'We know that autoimmunity starts way before #T1D diagnosis - if screened. We learnt that #cpeptide might not be relevant thanks to models'
-Dr A. Galderisi
#ISPAD #ISPAD2022 #dedoc°voices
#patientvoice #payitforward @dedocORG 1/n
Digitalization in Diabetes Education and Care:
'We can find heterogeneity in #T1D even before diagnosis. Important to individualise treatment.'-Dr A. Galderisi
Yes, every #PwD has their own #diabetes.
#ISPAD #ISPAD2022 #dedoc°voices
#nothingaboutuswithoutus @dedocORG 2/n
'We can find heterogeneity in #T1D even before diagnosis. Important to individualise treatment.'-Dr A. Galderisi
Yes, every #PwD has their own #diabetes.
#ISPAD #ISPAD2022 #dedoc°voices
#nothingaboutuswithoutus @dedocORG 2/n
Digitalization in #diabetes Education and Care:
'#TIR and #BG daily variability matter though we still look at the big picture. #AI can help us understand further.'
-Dr A. Galderisi
#ISPAD #ISPAD2022 #dedoc°voices
#patientvoice #payitforward @dedocORG 3/n
'#TIR and #BG daily variability matter though we still look at the big picture. #AI can help us understand further.'
-Dr A. Galderisi
#ISPAD #ISPAD2022 #dedoc°voices
#patientvoice #payitforward @dedocORG 3/n
