#HCLDR Transcript
Healthcare social media transcript of the #HCLDR hashtag.
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See #HCLDR Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | HCLDR Moderator @hcldr Behind this blue #hcldr logo is @JoeBabaian – your #hcldr chat moderator tonight calling in from Houston. |
| HCLDR Moderator @hcldr Hello and welcome everyone to the weekly Healthcare Leadership Tweet Chat #hcldr |
 | Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: Hello and welcome everyone to the weekly Healthcare Leadership Tweet Chat #hcldr |
| HCLDR Moderator @hcldr Tonight, my friend and #hcldr partner Colin is traveling on family vacation. Have fun Colin! @colin_hung #hcldr |
| HCLDR Moderator @hcldr For next hour we’ll be discussing: “Healthcare's Forgotten Patient” You can read more on the #hcldr blog https://t.co/prGnO3Snad https://t.co/OE7xA3MhFY |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: For next hour we’ll be discussing: For next hour we’ll be discussing: “Healthcare's Forgotten Patient” You can read more on the #hcldr blog https://t.co/prGnO3Snad https://t.co/OE7xA3MhFY |
 | Bonnie C. Sheeren, BCPA @bonniesheeren @hcldr @Colin_Hung aww---we'll miss you @Colin_Hung! Have too much fun and we'll see you soon! #hcldr |
| HCLDR Moderator @hcldr For those new to #hcldr - every week we gather at 8:30pm ET to discuss interesting & relevant healthcare topics |
| HCLDR Moderator @hcldr Let’s start off with some introductions! #hcldr |
 | Laura Appel @lauradianeappel Excited to be here for the first time in weeks. I don’t even know what the topic is... #didntdothereading #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @bonniesheeren @hcldr @Colin_Hung Hi Bonnie, welcome! Staying cool I hope? #hcldr |
 | Amy Gleason @ThePatientsSide Hi friends! Been too long! Joining from the plane #HCLDR |
| Joe Babaian 🇺🇦 @JoeBabaian @lauradianeappel Great seeing you! :) #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @ThePatientsSide Way too long! Welcome my friend! #hcldr |
 | Mary Gallagher @mgallagherUSA @hcldr Thank you for selecting this topic > so important. Glad to be here tonight. I'm Mary from Boston, head of marketing at Seniorlink. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren Bonnie Sheeren, independent pt advocate here in Houston TX! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @mgallagherUSA @hcldr Hi Mary, great to see you! #hcldr |
| HCLDR Moderator @hcldr The #hcldr chat lasts 1hr and is designed to educate and promote professional development in healthcare. |
| HCLDR Moderator @hcldr We usually have 4 topics/questions that we discuss together as a community. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @JoeBabaian @hcldr @Colin_Hung Can't wait till we get some of the rain they are promising us tomorrow!!! #hcldr |
 | Heather McCullen @H_SalemOaks Hi #hcldr, Heather joining from outside of Ann Arbor. I'm part of @SalemOaks |
 | Michael W. Roberts @michaelwroberts Good evening, #hcldr! Looking forward to learning a lot tonight. |
| HCLDR Moderator @hcldr You can read more about each week’s topic on the #hcldr blog https://t.co/ZgftfgtJ6c |
| HCLDR Moderator @hcldr While intros continue, I’ll go over some #hcldr tweetchat guidelines. |
 | Beth Steckler (she/her) @purplemamabear RT @hcldr: For next hour we’ll be discussing: For next hour we’ll be discussing: “Healthcare's Forgotten Patient” You can read more on the #hcldr blog https://t.co/prGnO3Snad https://t.co/OE7xA3MhFY |
| Bonnie C. Sheeren, BCPA @bonniesheeren @H_SalemOaks @SalemOaks Hi Heather! Are things cooler up your way? It's been 100+ degrees here! #hcldr |
 | Penelope Zahn @PenelopeZahn RT @hcldr: For next hour we’ll be discussing: For next hour we’ll be discussing: “Healthcare's Forgotten Patient” You can read more on the #hcldr blog https://t.co/prGnO3Snad https://t.co/OE7xA3MhFY |
| Joe Babaian 🇺🇦 @JoeBabaian @H_SalemOaks @SalemOaks Hi Heather! Great seeing you! :) #hcldr |
 | Nathan Grunewald MD MBA FACS @NathanGrunewald Good evening #hcldr superstars! ✨💫🌟 Happy to be checking from #WI! Hi @JoeBabaian 👋 |
 | Lisa Danielpour @LisaDani Hi #hcldr from Cleveland #HIT and patient/family advocate. Hope your summer is going great! |
| Joe Babaian 🇺🇦 @JoeBabaian @LisaDani Great to see you Lisa! #hcldr |
| HCLDR Moderator @hcldr We have 4 questions tonight labeled T1, T2, T3, & T4. Watch this blue @hcldr moderator circle to know which question we are on #hcldr |
| HCLDR Moderator @hcldr We assume all tweets during #hcldr are your own & not those of your employer (unless specifically expressed) |
 | Bingle @TheBingle Bingle joining in from NY with patient exp. Hello all in #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @NathanGrunewald Hey there Nathan! Happy you made it. :) #hcldr |
 | Mariah Obiedzinski @MariahWrites Sorry to miss out tonight, #hcldr friends! #football momming begins this week 🤘👍 |
| Joe Babaian 🇺🇦 @JoeBabaian @TheBingle Hello Bingle! #hcldr |
| Beth Steckler (she/her) @purplemamabear I am Beth was caregiver 2 my husband who passed and am still caregiver 4 my 2 kids. #hcldr |
| Heather McCullen @H_SalemOaks @bonniesheeren @SalemOaks Some might say too cool. My weather station say 77, but it's starting to feel very fall-like #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @MariahWrites No worries! See you next time! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @esteckler2 Welcome Beth! #hcldr |
 | Barby Ingle Official @BarbyIngle I am @BarbyIngle, pres of @powerofpain, cheerleader of hope, author, wife, sister, award-winning healthcare industry leader and advocate... #hcldr https://t.co/tQ1A0vZ8wB |
| HCLDR Moderator @hcldr Please label your answers with the appropriate T1, T2, T3, or T4 label. This will make our transcript easier to read #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @MariahWrites wow--football season is already starting? #hcldr |
 | Erin Moriarty Wade @EMoriartyWade Hi #hcldr friends. I’m a freelance writer specializing in healthcare and the mom of a child with a rare disease. Great blog @JoeBabaian! |
| Joe Babaian 🇺🇦 @JoeBabaian @BarbyIngle @powerofpain Hello Barby! Great seeing you!! #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald @JoeBabaian I am happy as well! Summer can be a hard time for evening activities, but #hcldr is always a great hour of my week. |
| Bonnie C. Sheeren, BCPA @bonniesheeren @H_SalemOaks @SalemOaks Send that cool air down here! PLEEZ! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @EMoriartyWade Thanks Erin! Great to see you! #hcldr |
| Lisa Danielpour @LisaDani @JoeBabaian Thanks so much! Look forward to interesting discussion #hcldr |
| HCLDR Moderator @hcldr We have so many amazing folks on tonight & lots of ideas will be shared – please try to stay on topic. #hcldr |
 | Sandra Woods, CIPP/C; she/her @SandraWoodsMtl Helllloooo #hcldr 🤗 Joining in from Montréal, with a background in bioethics or biomedical ethics... And, much more recently, a rare disease & chronic pain patient & advocate since 2016 Photo via @jthexhibit at @cusm_muhc https://t.co/ykMAIFxxqq https://t.co/UDTpP4bLLq |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hi guys. I'm Shereese here in #boston #hcldr |
| Bingle @TheBingle @JoeBabaian Hi JB and all ! #hcldr |
 | David Lee Scher, MD @dlschermd Hello all here at #hcldr. Glad to be here w/my friends. |
| Joe Babaian 🇺🇦 @JoeBabaian @SandraWoodsMtl @jthexhibit @cusm_muhc Good evening Sandra! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @ShereesePubHlth Happy #hcldr day! |
| Joe Babaian 🇺🇦 @JoeBabaian @ShereesePubHlth Nice to see you Shereese! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl RT @hcldr: We assume all tweets during #hcldr are your own & not those of your employer (unless specifically expressed) |
| Bonnie C. Sheeren, BCPA @bonniesheeren @ShereesePubHlth Hey there, Shereese!!! :) #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald @ShereesePubHlth #hcldr https://t.co/fIvRseOidK |
| Joe Babaian 🇺🇦 @JoeBabaian @dlschermd So happy to see you my friend. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl RT @hcldr: For next hour we’ll be discussing: For next hour we’ll be discussing: “Healthcare's Forgotten Patient” You can read more on the #hcldr blog https://t.co/prGnO3Snad https://t.co/OE7xA3MhFY |
| Erin Moriarty Wade @EMoriartyWade @JoeBabaian Great to see you too @JoeBabaian! #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @EMoriartyWade Hi Erin. #hcldr |
 | Kez! @denniskenez Good evening #hcldr Dennis here from Maryland. Looking forward to our discussion. Cheers to all |
| Joe Babaian 🇺🇦 @JoeBabaian @wordfinga Welcome Linda! #hcldr |
| HCLDR Moderator @hcldr Let’s get ready for T1 in just 1 minute #hcldr |
 | Christina Gilman @GilmanFamily @hcldr Hi Christina here. From Brantford Ontario. Mom of 4 Neuro diverse kids. #hcldr |
 | Brian Mack @BFMack Hey #hcldr friends, I’m checking in from Grand Rapids, MI. I manage #Marcom for Michigan’s premier #HIE, @GLHC_HIE |
| Joe Babaian 🇺🇦 @JoeBabaian @denniskenez Hi there Dennis! #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @JoeBabaian Nice to see you as well #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @BFMack @GLHC_HIE Welcome Brian! I hope you're doing well up there :) :) #hcldr |
| Barby Ingle Official @BarbyIngle @JoeBabaian @powerofpain Hey Hey Joe! Glad to be here tonight... it's been a tough day for me #hcldr... but got my answers thought through, double checked and ready to go! #migraine. |
| HCLDR Moderator @hcldr Time for T1: What’s your experience with overlooked/forgotten patients? Were you able to change things? #hcldr https://t.co/HWRqmkjtLp |
| Joe Babaian 🇺🇦 @JoeBabaian @GilmanFamily @hcldr Hello Christina! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: Time for T1: Time for T1: What’s your experience with overlooked/forgotten patients? Were you able to change things? #hcldr https://t.co/HWRqmkjtLp |
 | IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste Hello #hcldr community 👋 Happily joining from the North Shore of #Boston! I am a #health #innovation catalyst, #cancer thriver, #socialmedia ninja, marketer, board member, ... https://t.co/wGtwAusiLB |
| Joe Babaian 🇺🇦 @JoeBabaian @BarbyIngle @powerofpain I'm glad! #hcldr |
 | Janae Sharp @CoherenceMed @ShereesePubHlth @JoeBabaian Hi guys - lurking #hcldr |
 | Virginia @PracticalHIT #hcldr Good evening @practicalHIT here |
| Barby Ingle Official @BarbyIngle T1: So many PTs who are new 2 chronic conditions R forgotten/overlooked. Our health systems R created 4 acute care. Chronic & rare conditions R not understood. I am doing much better as an empowered PT getting timely & proper access 2 care will always be a challenge #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @GilmanFamily @hcldr Hi almost-neighbour! I'm just down the TransCanada, in Montreal🤗 #hcldr |
 | Sally James @jamesian Joining late, apologies. From #seattle #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @CoherenceMed @ShereesePubHlth Hi there Janae! #hcldr |
| Penelope Zahn @PenelopeZahn RT @esteckler2: I am Beth was caregiver 2 my husband who passed and am still caregiver 4 my 2 kids. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @MattBMartin Hello Matt! #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @hcldr: Time for T1: Time for T1: What’s your experience with overlooked/forgotten patients? Were you able to change things? #hcldr https://t.co/HWRqmkjtLp |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @NathanGrunewald S'up, doc. 🎨 #hcldr https://t.co/u3yAtWQ3Q8 |
| Erin Moriarty Wade @EMoriartyWade T1. The odyssey to get an accurate #raredisease diagnosis often involves patients being overlooked. Symptoms that don’t make sense and aren’t urgent are sometimes overlooked. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren T1: Overlooked patients? This is the reason we need an advocate with us in ERs/hospitals to form a team with the overworked/overwhelmed hc providers to be sure nothing gets ignored. It takes a village! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @IrmaRaste Great photo - so nice! Great to see you my friend :) #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T1 #hcldr Example ⤵️ Benzodiazepines for elders ↔️ Almost 100% increase in Rx since 2003⤵️ "Misuse" ↔️ Intended for short-term, but often prescribed for months ⤵️ Risks "of falls, fractures... accidents, addiction & dementia" @joerianatalie @epearsonbusph https://t.co/MuQesUpnaV |
| Brian Mack @BFMack @BarbyIngle @powerofpain 2 Twitter chats in the same day Barby! #HowCoolIsThat! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @IrmaRaste: Hello #hcldr community 👋 Happily joining from the North Shore of #Boston! I am a #health #innovation catalyst, #cancer thriver, #socialmedia ninja, marketer, board member, ... https://t.co/wGtwAusiLB |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T1 #hcldr And long-term *care* ⤵️ "What patients in the long-term care system need to fear is not individual killers, but a culture of indifference that allows inadequate & second-rate care to be accepted as the norm" ~ @picardonhealth @globeandmail https://t.co/oiZ3mNqv9j |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T1 #hcldr And long-term *care* ⤵️ "What patients in the long-term care system need to fear is not individual killers, but a culture of indifference that allows inadequate & second-rate care to be accepted as the norm" ~ @picardonhealth @globeandmail https://t.co/oiZ3mNqv9j |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T1 #hcldr Example ⤵️ Benzodiazepines for elders ↔️ Almost 100% increase in Rx since 2003⤵️ "Misuse" ↔️ Intended for short-term, but often prescribed for months ⤵️ Risks "of falls, fractures... accidents, addiction & dementia" @joerianatalie @epearsonbusph https://t.co/MuQesUpnaV |
 | Iris Thiele Isip Tan MD, MSc @endocrine_witch @hcldr Hello #hcldr! Iris, endocrinologist from Manila. It's been a while. |
| Joe Babaian 🇺🇦 @JoeBabaian RT @bonniesheeren: T1: T1: Overlooked patients? This is the reason we need an advocate with us in ERs/hospitals to form a team with the overworked/overwhelmed hc providers to be sure nothing gets ignored. It takes a village! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @EMoriartyWade: T1. The odyssey to get an accurate #raredisease diagnosis often involves patients being overlooked. Symptoms that don’t make sense and aren’t urgent are sometimes overlooked. #hcldr |
| Virginia @PracticalHIT RT @SandraWoodsMtl: @ShereesePubHlth Happy #hcldr day! |
| Joe Babaian 🇺🇦 @JoeBabaian RT @BarbyIngle: T1: T1: So many PTs who are new 2 chronic conditions R forgotten/overlooked. Our health systems R created 4 acute care. Chronic & rare conditions R not understood. I am doing much better as an empowered PT getting timely & proper access 2 care will always be a challenge #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @EMoriartyWade Did you see the TBS show "Chasing the Cure?" If so, what did you think? #hcldr |
| Janae Sharp @CoherenceMed @JoeBabaian @ShereesePubHlth Hi. Miss you guys #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @PracticalHIT Hello Virginia! #hcldr |
| Lisa Danielpour @LisaDani T1 Forgotten patient populations include people w special needs including #autism #ASD when very busy healthcare professionals aren't sure how best to interact, don't understand sensory issues, may miss symptoms if person can't express way you expect #hcldr |
| Barby Ingle Official @BarbyIngle @BFMack @powerofpain Actually 3 :) #hitmc #WEGOHealthChat #hcldr |
| David Lee Scher, MD @dlschermd T1: sister had very rare disease. Literature research useless. Had to seek out best docs and minds ourselves. Given a lot of uknowns even to experts it became a truly shared decision journey. Sometimes even experts don’t have all the answers. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T1 #hcldr Another large group of forgotten patients = Those in #ChronicPain ⤵️ 1 in 5 Canadians lives with chronic pain ↔️ Of these 52% have moderate pain 14% with severe pain And 50% have lived with chronic pain for over 10 years! https://t.co/WvWRjbx5Ev via @DrFCampbell https://t.co/Qfhs39rB9w |
| Erin Moriarty Wade @EMoriartyWade T1. Patients with #chronic illness are sometimes overlooked or dismissed. A specialist recently told me that kids with chronic disease might complain unnecessarily because their pain/symptoms are “more on their radar” as he dismissed my daughter’s concerns. She was mad. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @dlschermd: T1: T1: sister had very rare disease. Literature research useless. Had to seek out best docs and minds ourselves. Given a lot of uknowns even to experts it became a truly shared decision journey. Sometimes even experts don’t have all the answers. #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald T1 Patients doing well is the primary goal for most patients & clinicians. These patients are often viewed as “easier” & help clinicians get through days with other complicated encounters. But, there is much to learn from well patients managing their chronic disease. #hcldr |
| Beth Steckler (she/her) @purplemamabear T1 I would categorize my kids as ‘forgotten’. They both have rare disease. Recommendation rare transplant. My daughters 1st transplant she did amazing. She was their ‘poster’ child 4 the surgery. Than she got sick, complications. Another transplant & no longer 1/#hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @CoherenceMed @JoeBabaian @ShereesePubHlth How's @NaveenBabyBob ? #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @NathanGrunewald: T1 Patients doing well is the primary goal for most patients & clinicians. These patients are often viewed as “easier” & help clinicians get through days with other complicated encounters. But, there is much to learn from well patients managing their chronic disease. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @EMoriartyWade: T1. Patients with #chronic illness are sometimes overlooked or dismissed. A specialist recently told me that kids with chronic disease might complain unnecessarily because their pain/symptoms are “more on their radar” as he dismissed my daughter’s concerns. She was mad. #hcldr |
 | Janet Kennedy @GetSocialHealth Hi, Everyone! Janet Kennedy with @GetSocialHealth and @SpencerHealth Solutions. Happy to be here and running to read the blog post so I don't get tsk-tsk'd tonight! #HCLDR |
| Heather McCullen @H_SalemOaks T1: I'm not really comfortable talking about details, but when my grandfather died it felt he'd been ignored because he was too agreeable and didn't complain. I'm still very angry about it. #hcldr |
 | Lee Becker @LeeBeckerDC @hcldr Hi #hcldr- Former Navy Corpsman, nurse, etc - on awesome team helping to improve the Veterans experience. Hope everyone is doing well. Looking forward to the chat tonight. |
| Laura Appel @lauradianeappel T1 I have no confidence that my family’s experiences lead to change. Complexity and staffing pressures are pervasive. What if every misplaced patient or delay of care were as serious as an airliner malfunction? Until we are highly reliable...#hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @GetSocialHealth @spencerhealth Sounds good Janet, you'll be fine! Welcome! #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald @bonniesheeren Indeed. This is a team based effort. #hcldr |
 | Valerie Simon @ValerieSimon Listening and learning with other healthcare leaders and advocates in the #hcldr chat (live now... if you are interested in healthcare be sure to follow the hashtag!) |
| Joe Babaian 🇺🇦 @JoeBabaian RT @H_SalemOaks: T1: T1: I'm not really comfortable talking about details, but when my grandfather died it felt he'd been ignored because he was too agreeable and didn't complain. I'm still very angry about it. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @SandraWoodsMtl @DrFCampbell Especially true for us women? :( #hcldr |
| Janae Sharp @CoherenceMed @bonniesheeren @JoeBabaian @ShereesePubHlth @NaveenBabyBob He’s great. Happy to be here. #hcldr https://t.co/Tz1RvBRAM4 |
| Erin Moriarty Wade @EMoriartyWade @bonniesheeren I did not. I unfortunately don’t watch much tv these days but that sounds interesting. Was it the one that a lot of chronic illness patients were upset about last year? #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @ValerieSimon Great to see you Valerie, welcome! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @RareCandace Hi Candace! #hcldr |
 | Lisa Gualtieri @lisagualtieri Hi #hcldr! I'm joining late from #Boston where I am grading final papers. If your choice was #hcldr or grading, which would you do? |
 | PF Anderson @pfanderson@disabled.social @pfanderson Whoa! It took 15 minutes for my computer to start up. But I’m making it into #hcldr |
 | Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO 8 days! Join us online in social virtual reality during Disney°o° Data & Analytics Conference: 'Once Upon a Time'👸 to 'Happily Ever After'📈 w/Data! #DDAC2019 Wed, Aug 21, 1PM ET W/or w/o #VirtualReality headset! https://t.co/wpYdQQdOv3 #SocialVR #HCLDR https://t.co/CDsyHIyvFz |
| Joe Babaian 🇺🇦 @JoeBabaian @pfanderson Great that it worked :) Welcome! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @bonniesheeren @DrFCampbell Definitely! Thst link is to a preliminary report, just released, of Canada's new Task Force on Chronic Pain... mentions the preponderance of women in pain 😰 #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @lisagualtieri You've got my vote! :) :) Good to see you! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @RareCandace Thanks! Happy you joined tonight! #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @EMoriartyWade Probably so---I thought it was a little exploitative. Especially when they showed this one pt suffering from idiopathic paralysis, breaking down and sobbing. Seemed unnecessary to have the audience see that... #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T1 I'm calling them out. @SinaiHealth in Maryland has a ED wait time of 5 hours & they cattle call patients by a number. Sadest thing ove ever seen. #hcldr https://t.co/J8JfuFYcVb |
| Lee Becker @LeeBeckerDC @hcldr T1 - On the @VeteransHealth end it is a great place to look at ways to find solutions for most severely ill and injured. Here is an example where VA is on pace to cure all Veterans with hepatitis C. Proud of team. #hcldr https://t.co/XJWQ00MO7Y |
| Mary Gallagher @mgallagherUSA T1. My experience w/"forgotten patients" is work that my company is blessed to do w/family caregivers who care for the most complex+ many covered by Medicaid. It's an honor for our care teams to cross the thresholds of their homes or reach them on phones+care for them #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @CoherenceMed @JoeBabaian @ShereesePubHlth @NaveenBabyBob He's getting SO big!!! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @LeeBeckerDC @hcldr @VeteransHealth Welcome Lee! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl RT @EMoriartyWade: T1. Patients with #chronic illness are sometimes overlooked or dismissed. A specialist recently told me that kids with chronic disease might complain unnecessarily because their pain/symptoms are “more on their radar” as he dismissed my daughter’s concerns. She was mad. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @mgallagherUSA: T1. My experience w/"forgotten patients" is work that my company is blessed to do w/family caregivers who care for the most complex+ many covered by Medicaid. It's an honor for our care teams to cross the thresholds of their homes or reach them on phones+care for them #hcldr |
| Virginia @PracticalHIT @hcldr #t1 #hcldr too many times at the bedside of a loved one I have felt they are overlooked and I have to a ask multiple times for them to be helped. especially bad for someone bedridden in postacute care. |
| Lisa Danielpour @LisaDani T1 From my exper teens esp w chronic illness can be overlooked in that middle ground, not cute young child, not adult as able to articulate needs. When my son hospitalized for months, medical professionals, lab techs not addressing him, just taking his arm for labs, etc #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @LisaDani: T1 From my exper teens esp w chronic illness can be overlooked in that middle ground, not cute young child, not adult as able to articulate needs. When my son hospitalized for months, medical professionals, lab techs not addressing him, just taking his arm for labs, etc #hcldr |
 | Cassie Quinlan @cassiqu RT @H_SalemOaks: T1: T1: I'm not really comfortable talking about details, but when my grandfather died it felt he'd been ignored because he was too agreeable and didn't complain. I'm still very angry about it. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @PracticalHIT: @hcldr #t1 #hcldr too many times at the bedside of a loved one I have felt they are overlooked and I have to a ask multiple times for them to be helped. especially bad for someone bedridden in postacute care. |
| Nathan Grunewald MD MBA FACS @NathanGrunewald @ShereesePubHlth @SinaiHealth 🤯 #ptexp fail. #hcldr |
 | Brad Lehman @brad_lehman #hcldr Running late tonight - This is Brad from #SmileyAnswers - Living in Michigan. Excellent article and topic > @JoeBabaian @Colin_Hung |
 | Matthew Loxton is also on Mastodon @mloxton Listening on #hcldr |
 | Kelly S (She/Her) @KellyOT RT @hcldr: For next hour we’ll be discussing: For next hour we’ll be discussing: “Healthcare's Forgotten Patient” You can read more on the #hcldr blog https://t.co/prGnO3Snad https://t.co/OE7xA3MhFY |
| Joe Babaian 🇺🇦 @JoeBabaian @brad_lehman @Colin_Hung Great seeing you Brad! No worries, you made it! :) #hcldr |
| Brian Mack @BFMack @JoeBabaian @GLHC_HIE Hi Joe! Life is good! #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @GetSocialHealth @spencerhealth There's no tsk-tsking on #hcldr...at least not that I've ever seen! :) |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @LisaDani: T1 From my exper teens esp w chronic illness can be overlooked in that middle ground, not cute young child, not adult as able to articulate needs. When my son hospitalized for months, medical professionals, lab techs not addressing him, just taking his arm for labs, etc #hcldr |
| Christina Gilman @GilmanFamily @hcldr My experience is personal. Being Métis I could not use traditional medicine. As well having journeyed through the system with kids, the healthcare has three silos in care. Ped/Adult/Geriatric. Transitions between these silos are a scary experience. #hcldr |
| Lee Becker @LeeBeckerDC @BarbyIngle Great point that care system is set up for acute. Also care system relies more heavily on outpatient — which without good care coordination patients can be forgotten. #hcldr |
| Cassie Quinlan @cassiqu RT @NathanGrunewald: T1 Patients doing well is the primary goal for most patients & clinicians. These patients are often viewed as “easier” & help clinicians get through days with other complicated encounters. But, there is much to learn from well patients managing their chronic disease. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @PracticalHIT: @hcldr #t1 #hcldr too many times at the bedside of a loved one I have felt they are overlooked and I have to a ask multiple times for them to be helped. especially bad for someone bedridden in postacute care. |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @endocrine_witch @hcldr Waving a big #hcldr hello, Iris! I've been missing the #healthxph chats, because of our summer Saturday morning activities here... |
 | Patricia Bath, MBA, MSN, RN-BC @PatriciaCarolyn T1 Patients without strong advocates are often overlooked. That’s why it’s so important for healthcare professionals to advocate for their patients #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @hcldr T1. I often do prescription "consolidation" for my patients. There are patients who see several doctors and each gives a prescription. It can be very confusing. The "forgotten" part here is the possibility of drug interactions and deprescribing. #hcldr |
 | Autie - Artificial Autism Intelligence @grhluna24 RT @LisaDani: T1 Forgotten patient populations include people w special needs including #autism #ASD when very busy healthcare professionals aren't sure how best to interact, don't understand sensory issues, may miss symptoms if person can't express way you expect #hcldr |
| Michael W. Roberts @michaelwroberts @H_SalemOaks Overall, I’m very uncomfortable with having to be the “squeaky wheel” to get proper care, but our family is willing to do so for our daughter. Still, sucks to face that choice or inattention. #hcldr |
| Christina Gilman @GilmanFamily @hcldr T1- My experience is personal. Being Métis I could not use traditional medicine. As well having journeyed through the system with kids, the healthcare has three silos in care. Ped/Adult/Geriatric. Transitions between these silos are a scary experience. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @endocrine_witch @hcldr Happy dance, hugs! So humbled and happy to have you with us again my friend. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T1 Disabled patients with associated health issues are very often overlooked #hcldr @training_too |
| Joe Babaian 🇺🇦 @JoeBabaian RT @michaelwroberts: @H_SalemOaks Overall, I’m very uncomfortable with having to be the “squeaky wheel” to get proper care, but our family is willing to do so for our daughter. Still, sucks to face that choice or inattention. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @PatriciaCarolyn: T1 Patients without strong advocates are often overlooked. That’s why it’s so important for healthcare professionals to advocate for their patients #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T1 #hcldr I'm in the interesting position of being both in biomedical ethics & an overlooked (dismissed) patient ⤵️ Repeatedly told by a hospital MD, during first 3 months of undiagnosed rare disease, to "stop exaggerating" https://t.co/EhVHqqwoGM |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @SandraWoodsMtl @hcldr That's ok 😘 just like #hcldr, #healthxph is whole year round. |
| Cassie Quinlan @cassiqu RT @dlschermd: T1: T1: sister had very rare disease. Literature research useless. Had to seek out best docs and minds ourselves. Given a lot of uknowns even to experts it became a truly shared decision journey. Sometimes even experts don’t have all the answers. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T1 #hcldr I'm in the interesting position of being both in biomedical ethics & an overlooked (dismissed) patient ⤵️ Repeatedly told by a hospital MD, during first 3 months of undiagnosed rare disease, to "stop exaggerating" https://t.co/EhVHqqwoGM |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste #hcldr T1: As a caregiver for loved ones! Elderly bedridden grandparents w/ limited ability to demand better care in a nursing home. Post-op rehab for my father in a carefully chosen Cambridge, MA facility that turned out to be a nightmare. How do #patients manage w/o advocates?? |
 | Larry Roy @thepainpastor RT @BarbyIngle: T1: T1: So many PTs who are new 2 chronic conditions R forgotten/overlooked. Our health systems R created 4 acute care. Chronic & rare conditions R not understood. I am doing much better as an empowered PT getting timely & proper access 2 care will always be a challenge #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @IrmaRaste: #hcldr T1: #hcldr T1: As a caregiver for loved ones! Elderly bedridden grandparents w/ limited ability to demand better care in a nursing home. Post-op rehab for my father in a carefully chosen Cambridge, MA facility that turned out to be a nightmare. How do #patients manage w/o advocates?? |
| Janae Sharp @CoherenceMed @ShereesePubHlth @SinaiHealth @MountSinaiNYC ? @MountSinaiIR - the one you tagged is in Canada... #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T1b #hcldr I was finally able to change this situation, but only by fighting for a 2nd opinion; sometimes difficult to obtain within Canadian healthcare when the treating specialist doesn't agree with need for another opinion 😨 https://t.co/MoQvXEyT6l |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @mloxton Hi Matthew. How's your summer going? #hcldr |
| Laura Appel @lauradianeappel T1 I literally found my dad in a hallway outside a cardiology testing room. The tech moved him into the hall. No one picked him up. I went to find him because he had been gone too long. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @bonniesheeren: T1: T1: Overlooked patients? This is the reason we need an advocate with us in ERs/hospitals to form a team with the overworked/overwhelmed hc providers to be sure nothing gets ignored. It takes a village! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @IrmaRaste It's so sad that even when we are very careful in our selections....things break down. #hcldr |
| Lee Becker @LeeBeckerDC @EMoriartyWade Sorry for your recent bad experience caring for your daughter. Pain management is a major challenge - and think your point of managing chronic pain is so important. Requires empathy. #hcldr #ptexp |
| Joe Babaian 🇺🇦 @JoeBabaian RT @lauradianeappel: T1 I literally found my dad in a hallway outside a cardiology testing room. The tech moved him into the hall. No one picked him up. I went to find him because he had been gone too long. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @RareCandace I hate that you went through that, but I’m so glad you were able to advocate for yourself and eventually get the treatment you needed.Whew, quite a year for you so far. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @lauradianeappel Oh that is so sad!!! #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @endocrine_witch: @hcldr T1. I often do prescription "consolidation" for my patients. There are patients who see several doctors and each gives a prescription. It can be very confusing. The "forgotten" part here is the possibility of drug interactions and deprescribing. #hcldr |
| Janet Kennedy @GetSocialHealth Didn't we just do this? Oh, that was #HITMC! Let's solve problems #HCLDR! |
| HCLDR Moderator @hcldr Just 1 min until T2! #hcldr |
| Mary Gallagher @mgallagherUSA T1. And we are able to engage those families... some the system looked past. We care for Iraqi refugees to families who moved here post the hurricane in PR. Our families speak more than 40 languages. It truly does come down to trust + respect. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @JoeBabaian Well, sort of. Trying ... #hcldr |
| Bingle @TheBingle Second Rate care or no care is unacceptable. In NY the leaders let the care get lost. Henceforth, many people are on the street without much help. It's sad. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @mgallagherUSA: T1. And we are able to engage those families... some the system looked past. We care for Iraqi refugees to families who moved here post the hurricane in PR. Our families speak more than 40 languages. It truly does come down to trust + respect. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @endocrine_witch @hcldr That’s great and so helpful, especially for those of us who see multiple specialists! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @lauradianeappel: T1 I literally found my dad in a hallway outside a cardiology testing room. The tech moved him into the hall. No one picked him up. I went to find him because he had been gone too long. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @CoherenceMed @SinaiHealth @MountSinaiNYC @MountSinaiIR Lol. I wasn't sure so I put the state. #hcldr https://t.co/MOlEV6VP1i |
| Joe Babaian 🇺🇦 @JoeBabaian RT @endocrine_witch: @hcldr T1. I often do prescription "consolidation" for my patients. There are patients who see several doctors and each gives a prescription. It can be very confusing. The "forgotten" part here is the possibility of drug interactions and deprescribing. #hcldr |
| Kez! @denniskenez #hcldr T1 Agree with Lee's observation re: care coordination, which can be terribly frustrating for patients/caregivers leading to "forgotten" |
| Beth Steckler (she/her) @purplemamabear I think young woman with co occurring mental health issues are forgotten. #hcldr |
| HCLDR Moderator @hcldr Time for T2: How is modern healthcare designed only as a net to cover most people? What can extend the reach? #hcldr https://t.co/53V2jIBA7n |
| Bingle @TheBingle RT @bonniesheeren: T1: T1: Overlooked patients? This is the reason we need an advocate with us in ERs/hospitals to form a team with the overworked/overwhelmed hc providers to be sure nothing gets ignored. It takes a village! #hcldr |
| Barby Ingle Official @BarbyIngle @SandraWoodsMtl Interesting to me is this chart being used when it was expired in the 70's the new mcGill scale goes to 78, and chronic conditions (including crps, which I have) no longer appear on the scale... but people keep recreating this scale, AND sharing it.😟 #hcldr |
| Bingle @TheBingle RT @BarbyIngle: T1: T1: So many PTs who are new 2 chronic conditions R forgotten/overlooked. Our health systems R created 4 acute care. Chronic & rare conditions R not understood. I am doing much better as an empowered PT getting timely & proper access 2 care will always be a challenge #hcldr |
| Michael W. Roberts @michaelwroberts RT @LeeBeckerDC: @hcldr T1 - On the @VeteransHealth end it is a great place to look at ways to find solutions for most severely ill and injured. Here is an example where VA is on pace to cure all Veterans with hepatitis C. Proud of team. #hcldr https://t.co/XJWQ00MO7Y |
| Barby Ingle Official @BarbyIngle T2: Modern healthcare is a net (holes abound) that is designed for mass populations and does little to help the individual patient. If we focus on the individual patients needs we will change care, prevention, and overall health outcomes for better LIFE for many! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @lauradianeappel My dad apologized to me and my sister for peeing himself in bed after his broken hip because he'd asked for help getting to the bathroom almost an hour earlier, but no one ever came. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @BarbyIngle: T2: T2: Modern healthcare is a net (holes abound) that is designed for mass populations and does little to help the individual patient. If we focus on the individual patients needs we will change care, prevention, and overall health outcomes for better LIFE for many! #hcldr |
| Laura Appel @lauradianeappel @bonniesheeren Breakdown of the system. My impression is the inherent lack of organization and connectivity, which is difficult given all moving parts, is the root cause. #hcldr |
| Bingle @TheBingle RT @EMoriartyWade: T1. The odyssey to get an accurate #raredisease diagnosis often involves patients being overlooked. Symptoms that don’t make sense and aren’t urgent are sometimes overlooked. #hcldr |
 | Rachel Martens ♿️ (she/her) @RaeofSunshine79 @hcldr #hcldr Late to the party! I'm Rachel. Mom to a complex kiddo. Former cancer patient. Lover of coffee. |
| Lisa Danielpour @LisaDani @PatriciaCarolyn I agree, more I learn, more I worry about those who don't have strong advocates. I see impact my advocating for my son w Crohns made in getting him thru health crises & for other family members at diff life stages. Add health literacy, #SDOH & reality of busy clinicians #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @DrKittyMD Welcome, great to have you tonight! #hcldr |
| Erin Moriarty Wade @EMoriartyWade @dlschermd I’m so sorry for all you went through. You were really brave to share your story. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: Time for T2: Time for T2: How is modern healthcare designed only as a net to cover most people? What can extend the reach? #hcldr https://t.co/53V2jIBA7n |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @pfanderson Oh no! Sending #hcldr hugs!! With my #raredisease & #chronicpain awareness-raising - and cycling! - buddy, Max 🤗 And chocolate ice cream... he looooves chocolate 😉 https://t.co/5Ey6EchO6a |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @SandraWoodsMtl: T1b #hcldr I was finally able to change this situation, but only by fighting for a 2nd opinion; sometimes difficult to obtain within Canadian healthcare when the treating specialist doesn't agree with need for another opinion 😨 https://t.co/MoQvXEyT6l |
| Joe Babaian 🇺🇦 @JoeBabaian RT @denniskenez: #hcldr T1 Agree with Lee's observation re: #hcldr T1 Agree with Lee's observation re: care coordination, which can be terribly frustrating for patients/caregivers leading to "forgotten" |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @SandraWoodsMtl: T1 #hcldr I'm in the interesting position of being both in biomedical ethics & an overlooked (dismissed) patient ⤵️ Repeatedly told by a hospital MD, during first 3 months of undiagnosed rare disease, to "stop exaggerating" https://t.co/EhVHqqwoGM |
 | ann wall @shopshi RT @PatriciaCarolyn: T1 Patients without strong advocates are often overlooked. That’s why it’s so important for healthcare professionals to advocate for their patients #hcldr |
| Sally James @jamesian T1 - My mom was brain-damaged, but had both diabetes (due to car accident removal of pancreas) and breast cancer. Ppl with brain issues are in vulnerable spot - later saw the dementia of my mom-in-law as similar. #hcldr |
| Patricia Bath, MBA, MSN, RN-BC @PatriciaCarolyn @esteckler2 Very true. Maybe the real forgotten patients are the ones with healthcare providers who lost the reason they went into healthcare in the first place #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @SandraWoodsMtl: T1 #hcldr Another large group of forgotten patients = Those in #ChronicPain ⤵️ 1 in 5 Canadians lives with chronic pain ↔️ Of these 52% have moderate pain 14% with severe pain And 50% have lived with chronic pain for over 10 years! https://t.co/WvWRjbx5Ev via @DrFCampbell https://t.co/Qfhs39rB9w |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @CoherenceMed @SinaiHealth @MountSinaiNYC @MountSinaiIR They're masking themselves as @LBHealth these days but it's Sinai of Baltimore #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @RaeofSunshine79 @hcldr Hi Rachel! Happy to see you! #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste @SandraWoodsMtl @DrFCampbell Wow 1 in 5. Any idea on how that compares to the US? Interesting chart! #hcldr T1 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @IrmaRaste @SinaiHealth How awful is that? It should be unacceptable #hcldr |
| Sally James @jamesian @RaeofSunshine79 @hcldr Welcome. You are never too late to this #hcldr party. AND, feel free to answer questions 2 hrs later, and someone will see them. |
| Michael W. Roberts @michaelwroberts @endocrine_witch @hcldr I have a family member who is very concerned about this kind of occurrence. Glad that you’re taking a holistic look at a patient’s care. Surprising that it isn’t more commonplace. #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald T2 Care standardization moves everyone to the mean. Many patients don’t fit within the mean. Complex disease processes may miss early interventions if a ‘standard’ is applied. Time to critically evaluate patient concerns & in depth understanding makes for better care. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch #hcldr thanks for sharing! |
| Bonnie C. Sheeren, BCPA @bonniesheeren T2: Went into the PACU where my daughter was recovering & got her ice chips & made her comfortable. PACU nurse was grateful. Sometimes better to ask for forgiveness (if needed) than permission? #hcldr |
| David Lee Scher, MD @dlschermd @EMoriartyWade It was amazing how these world experts were also the most compassionate. My sis was a tough cookie biz woman and patient. She made me and her docs stronger as she challenged us. #hcldr |
| Bingle @TheBingle You question Drs. and you're labeled as troublemaker! IMHO #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Correction, Sinais ED is commonly known as @LBHealth #hcldr |
| Beth Steckler (she/her) @purplemamabear T2 someone mentioned our system set up for acute and I would agree yet we are seeing more and more chronic and complex health needs. We have always struggled particularly w daughter in treating comprehensively. GI, diabetes, pain and mental health MUST be 1/ #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @hcldr: Time for T2: Time for T2: How is modern healthcare designed only as a net to cover most people? What can extend the reach? #hcldr https://t.co/53V2jIBA7n |
| Bingle @TheBingle RT @EMoriartyWade: T1. Patients with #chronic illness are sometimes overlooked or dismissed. A specialist recently told me that kids with chronic disease might complain unnecessarily because their pain/symptoms are “more on their radar” as he dismissed my daughter’s concerns. She was mad. #hcldr |
| Lee Becker @LeeBeckerDC @hcldr T2 - We have amazing social workers, nurses, etc that are in case management roles (but system is very service specific) - and essentially we need a CM for all the CMs. The opportunity is with ideal process in place enabled by tech CRM, KM, AI, IoT- magic happens. #hcldr |
| Matthew Loxton is also on Mastodon @mloxton @ShereesePubHlth Gorgeous! Yourself? #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @michaelwroberts: @endocrine_witch @hcldr I have a family member who is very concerned about this kind of occurrence. Glad that you’re taking a holistic look at a patient’s care. Surprising that it isn’t more commonplace. #hcldr |
| Mary Gallagher @mgallagherUSA @jamesian There is so much that the hcare community can learn about supporting families w TBI but due to recent past wars + more soldiers coming home, more education is now happening. Re: Dementia care- I see it changing, slowly. But the stigma is what holds great care back #HCLDR |
| Michael W. Roberts @michaelwroberts @GilmanFamily @hcldr My daughter attended a camp for kids with a chronic condition this summer. One of their big teaching points was how to cross the pediatric / adult bridge. I hadn’t though of how important that was. #hcldr |
| Laura Appel @lauradianeappel T2 I meet caregivers regularly who are extending the reach. But they are spread thinly. Challenges of spreading new treatments, proving efficacy, connecting pts to information, getting benefit plans to help cover cost. #hcldr |
| Sally James @jamesian @endocrine_witch Geriatricians know - and try to remove meds that have "dizziness" as side effect for ppl at risk for falls, but general population needs to be aware. #hcldr #bioethics |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @mloxton A little exhausted but happy. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @GeekOnCoffee @hcldr Thankfully not so common. Maybe 5%? #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @lauradianeappel: T2 I meet caregivers regularly who are extending the reach. But they are spread thinly. Challenges of spreading new treatments, proving efficacy, connecting pts to information, getting benefit plans to help cover cost. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @DrKittyMD OH YES!! Transitioning for new adults at 18 yo is a dangerous & difficult time! Can lead to BAAAAD outcomes! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @grebeccahaines @lauradianeappel He was so ashamed. But there was nothing we could do #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @LeeBeckerDC: @hcldr T2 - We have amazing social workers, nurses, etc that are in case management roles (but system is very service specific) - and essentially we need a CM for all the CMs. The opportunity is with ideal process in place enabled by tech CRM, KM, AI, IoT- magic happens. #hcldr |
| David Lee Scher, MD @dlschermd @michaelwroberts @GilmanFamily @hcldr Agree. It’s the divide after which they need to learn to self-advocate. #hcldr |
| Lee Becker @LeeBeckerDC @RareCandace @EMoriartyWade You have a very important voice and part of the solutioning. Thank you for sharing! #hcldr |
| Erin Moriarty Wade @EMoriartyWade @DrKittyMD I recently did a writing project on the transition from #pediatric to adult care...this is a huge challenge for chronic and/or rare disease patients. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @esteckler2: T2 someone mentioned our system set up for acute and I would agree yet we are seeing more and more chronic and complex health needs. We have always struggled particularly w daughter in treating comprehensively. GI, diabetes, pain and mental health MUST be 1/ #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @bonniesheeren: T2: T2: Went into the PACU where my daughter was recovering & got her ice chips & made her comfortable. PACU nurse was grateful. Sometimes better to ask for forgiveness (if needed) than permission? #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @hcldr: For next hour we’ll be discussing: For next hour we’ll be discussing: “Healthcare's Forgotten Patient” You can read more on the #hcldr blog https://t.co/prGnO3Snad https://t.co/OE7xA3MhFY |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @hcldr: Time for T2: Time for T2: How is modern healthcare designed only as a net to cover most people? What can extend the reach? #hcldr https://t.co/53V2jIBA7n |
| Christina Gilman @GilmanFamily @hcldr T2 - in my view, Modern HC puts people in boxes based on diagnosis. To extend reach is treating each patient as an individual. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @NathanGrunewald: T2 Care standardization moves everyone to the mean. Many patients don’t fit within the mean. Complex disease processes may miss early interventions if a ‘standard’ is applied. Time to critically evaluate patient concerns & in depth understanding makes for better care. #hcldr |
| Laura Appel @lauradianeappel @pfanderson Same happened to my mom after having cardiac stents. #hcldr |
| Matthew Loxton is also on Mastodon @mloxton @ShereesePubHlth @SinaiHealth Wow, too few staff, or not enough beds, or no primary or preventive care? #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald @TheBingle I suspect there is plenty of that labeling occurring. However, I know plenty of physicians who luv well informed patients who help us understand their symptoms and present great ideas. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @GraceCordovano: Calling all my friends living with #AcuteMyeloidLeukemia! @savvy_coop needs your expertise & insights on life w/#AML. Check out the details below to sign up for a 75 min phone interview that pays $125. Details 👉https://t.co/oUXXQllrYO #Leukemia #PtExp #cancer #oncology #hcldr https://t.co/5AgEfM2yzd |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T1 #hcldr Another large group of forgotten patients = Those in #ChronicPain ⤵️ 1 in 5 Canadians lives with chronic pain ↔️ Of these 52% have moderate pain 14% with severe pain And 50% have lived with chronic pain for over 10 years! https://t.co/WvWRjbx5Ev via @DrFCampbell https://t.co/Qfhs39rB9w |
| Erin Moriarty Wade @EMoriartyWade T2. Healthcare is often designed to meet the needs of people who know they need healthcare. Outreach programs, health literacy initiatives, mobile mammograms, etc. can help reach people who don’t necessarily know what they need. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @hcldr You mean modern AMERICAN healthcare. With modern AMERICAN insurance. #hcldr |
| Lee Becker @LeeBeckerDC @DrKittyMD Love the lifespan approach. That is exactly the way to address and then opportunity for healthcare system to be proactive vs reactive. #hcldr |
| Bingle @TheBingle That's fascinating. Do you know how many patients have been brushed off? You're just nervous... anxiety... kicker is being called crazy! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @EMoriartyWade: T2. Healthcare is often designed to meet the needs of people who know they need healthcare. Outreach programs, health literacy initiatives, mobile mammograms, etc. can help reach people who don’t necessarily know what they need. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @NathanGrunewald: @TheBingle I suspect there is plenty of that labeling occurring. However, I know plenty of physicians who luv well informed patients who help us understand their symptoms and present great ideas. #hcldr |
| Janae Sharp @CoherenceMed @ShereesePubHlth @SinaiHealth @MountSinaiNYC @MountSinaiIR @LBHealth Oh gotcha #hcldr |
| Laura Appel @lauradianeappel @pfanderson @grebeccahaines Breaks your heart to have your person feel that. Not their problem to apologize for/feel guilty about. #hcldr |
| Mary Gallagher @mgallagherUSA T2. Health plans have been bldg out more robust complex care management programs+those case managers are some of the most caring people I've met-just wee bit stretched w caseloads. They are hidden gems. Families need to ask for that support pre dis-charge. Support is there.#hcldr |
| Matthew Loxton is also on Mastodon @mloxton @ShereesePubHlth Sounds about perfect :) #hcldr |
| Sally James @jamesian @TheBingle Someone told me - if you live in a less-populated county with only one neurologist? Don't ever get on his/her bad side. Was creepy to ponder. #hcldr Journalists ask Qs without regard to impact. |
 | christymaginn @christymaginn RT @EMoriartyWade: T2. Healthcare is often designed to meet the needs of people who know they need healthcare. Outreach programs, health literacy initiatives, mobile mammograms, etc. can help reach people who don’t necessarily know what they need. #hcldr |
| Bingle @TheBingle RT @lauradianeappel: T2 I meet caregivers regularly who are extending the reach. But they are spread thinly. Challenges of spreading new treatments, proving efficacy, connecting pts to information, getting benefit plans to help cover cost. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @lauradianeappel: T2 I meet caregivers regularly who are extending the reach. But they are spread thinly. Challenges of spreading new treatments, proving efficacy, connecting pts to information, getting benefit plans to help cover cost. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @michaelwroberts @hcldr We're still doing paper/handwritten prescriptions in Manila. #hcldr Maybe, that's why. I also label what the medicines are for: diabetes, BP etc. Sadly, some patients will need to prioritize what they will buy as healthcare mostly out-of-pocket. |
| Janae Sharp @CoherenceMed @bonniesheeren @JoeBabaian @ShereesePubHlth @NaveenBabyBob I know. I’m still tired #hcldr https://t.co/6ZJJLYA3c1 |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @hcldr T1: incident rate of my son's dx is around 1 in 30,000 to 50,000. We as a family had to basically wait 4 the science of complex care 2 advance before feeling like care made progress Never felt the ease of continuity of care all solved in one hour like an episode of House. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @michaelwroberts: @GilmanFamily @hcldr My daughter attended a camp for kids with a chronic condition this summer. One of their big teaching points was how to cross the pediatric / adult bridge. I hadn’t though of how important that was. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @jamesian @TheBingle That's scary!! #hcldr |
| Heather McCullen @H_SalemOaks @EMoriartyWade I'd add to that, people who have fine health literacy, but don't believe they're sick or sick enough to need care. People who know they need care, but have too many obstacles (childcare, needing to work...) so they stay quiet or put it off. #hcldr |
| Patricia Bath, MBA, MSN, RN-BC @PatriciaCarolyn @GilmanFamily @hcldr Yes, individualized holistic care without biases #hcldr |
 | Josh Ang @iJoshAng RT @EMoriartyWade: T2. Healthcare is often designed to meet the needs of people who know they need healthcare. Outreach programs, health literacy initiatives, mobile mammograms, etc. can help reach people who don’t necessarily know what they need. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @endocrine_witch: @michaelwroberts @hcldr We're still doing paper/handwritten prescriptions in Manila. #hcldr Maybe, that's why. I also label what the medicines are for: diabetes, BP etc. Sadly, some patients will need to prioritize what they will buy as healthcare mostly out-of-pocket. |
 | Stephen Borstelmann MD @drsxr RT @EMoriartyWade: T1. Patients with #chronic illness are sometimes overlooked or dismissed. A specialist recently told me that kids with chronic disease might complain unnecessarily because their pain/symptoms are “more on their radar” as he dismissed my daughter’s concerns. She was mad. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @michaelwroberts @GilmanFamily @hcldr That’s so great to hear! I recently did a research/writing project on this for a client and I learned how challenging this transition from pediatric to adult care is. I’m definitely not looking forward to it with my daughter. #hcldr |
| Amy Gleason @ThePatientsSide T1: I think many women are “forgotten patients” and rare disease patients often feel that way when there are not any FDA approved treatments for them. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T2 Stop running hospitals like private corps. We can consider all vulnerable stakeholders without bankrupting care. It's called "Leading like you give a f_ck." #hcldr https://t.co/EnjYA55JHW |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @hcldr T1 (contd) I had to be the one to work extra hard to in some cases have people lay out their ideas. To this day I still dont understand what all the barriers were. /2 #hcldr |
| Lee Becker @LeeBeckerDC @EMoriartyWade Spot on! I have heard the saying where our system is set up for “sickcare and not healthcare”. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @mgallagherUSA: T2. Health plans have been bldg out more robust complex care management programs+those case managers are some of the most caring people I've met-just wee bit stretched w caseloads. They are hidden gems. Families need to ask for that support pre dis-charge. Support is there.#hcldr |
| Lisa Danielpour @LisaDani T2: Our health care system & medical professionals are so stretched, stressed, makes hard to handle populations w unique needs or who don't voice them. Offer more social workers, psychologists for those needs, new approaches ie comprehensive care in 1 locatn for populatns #hcldr |
| Erin Moriarty Wade @EMoriartyWade @LeeBeckerDC Thanks so much @LeeBeckerDC. The funny thing is she’s a very tough kid with a high tolerance for pain. She soldiered on as usual. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @lauradianeappel: @pfanderson @grebeccahaines Breaks your heart to have your person feel that. Not their problem to apologize for/feel guilty about. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @hcldr: Time for T2: Time for T2: How is modern healthcare designed only as a net to cover most people? What can extend the reach? #hcldr https://t.co/53V2jIBA7n |
| Mary Gallagher @mgallagherUSA T2. We need better referral system for centers of excellence for cancers/ MS - complex diseases. Ppl living in remote areas should have access to those specialists. I worked in multiple myeloma for a Phrma brand- it was so sad talking to patients that had MM misdiagnosed for yrs |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @NathanGrunewald: T2 Care standardization moves everyone to the mean. Many patients don’t fit within the mean. Complex disease processes may miss early interventions if a ‘standard’ is applied. Time to critically evaluate patient concerns & in depth understanding makes for better care. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @LisaDani: T2: T2: Our health care system & medical professionals are so stretched, stressed, makes hard to handle populations w unique needs or who don't voice them. Offer more social workers, psychologists for those needs, new approaches ie comprehensive care in 1 locatn for populatns #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @ThePatientsSide: T1: T1: I think many women are “forgotten patients” and rare disease patients often feel that way when there are not any FDA approved treatments for them. #hcldr |
| HCLDR Moderator @hcldr RT @ThePatientsSide: T1: T1: I think many women are “forgotten patients” and rare disease patients often feel that way when there are not any FDA approved treatments for them. #hcldr |
| HCLDR Moderator @hcldr Just 1 min until T3! #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @mloxton @SinaiHealth IMHO, poor leadership, under-trained staff, and a culture of noncompliance #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @BarbyIngle Also, it didn't expire in the 70s, it was developed in the 70s Feel free to read about it here, at @mcgillu @McGillMed https://t.co/3QZjH1yvN5 #hcldr |
| David Lee Scher, MD @dlschermd @mgallagherUSA T2: Financial resources need to used wisely. More common problems utilize the most resources. $ can be saved by providing for more care at home. Tech can help. Forgotten pts and caregivers need to advocate. My sis fought her ins comp. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @lauradianeappel @grebeccahaines Yes. Yes. And you remember. The nurse who finally showed up explained that his case mandated two staff for a transfer, but they had only one scheduled. So it didn't matter when he called, they wouldn't have been able to respond. #hcldr |
 | Ziva Mann @MannZiva RT @ThePatientsSide: T1: T1: I think many women are “forgotten patients” and rare disease patients often feel that way when there are not any FDA approved treatments for them. #hcldr |
| Sally James @jamesian @EMoriartyWade @michaelwroberts @GilmanFamily @hcldr In large metro areas, there are "adolescent" pediatricians who specialize in caring for teens until 21. https://t.co/pNIQJ7A8FB #hcldr |
| Amy Gleason @ThePatientsSide T1: I have worked hard to change things for patients by working with rare disease organizations like @curejm and @GlobalGenes and by cofounding @caresync. Try to give hope and stand with them in the fight #hcldr |
 | Zayna Khayat, PhD @ZaynaKhayat T1. #hcldr Toronto grassroots community health magazine The Local [@thelocalhealth] did an eye opening piece recently on medical deserts https://t.co/1o5gX4NVvQ @UHNOpenLab @taimhuynh #Underserved #Overlooked https://t.co/xKWoGbLMC6 |
| Joe Babaian 🇺🇦 @JoeBabaian #hcldr |
| Michael W. Roberts @michaelwroberts RT @NathanGrunewald: T2 Care standardization moves everyone to the mean. Many patients don’t fit within the mean. Complex disease processes may miss early interventions if a ‘standard’ is applied. Time to critically evaluate patient concerns & in depth understanding makes for better care. #hcldr |
| Bingle @TheBingle T2 Modern Healthcare is only as good as what is known now. There's no question that "the professionals" kowtow to that which is known. Henceforth, many pts discarded as problems. #hcldr |
| HCLDR Moderator @hcldr Time for T3: Who has responsibility for patient/caregiver education, access, direction, and followup? How can these roles be shared? #hcldr https://t.co/N3tico7MB5 |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: Time for T3: Time for T3: Who has responsibility for patient/caregiver education, access, direction, and followup? How can these roles be shared? #hcldr https://t.co/N3tico7MB5 |
| Erin Moriarty Wade @EMoriartyWade @Kidsdoc1Rick We actually finally did and saw her today for the first time :) My daughter was happy and our main specialist seemed relieved that we were changing this particular physician. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @ZaynaKhayat: T1. #hcldr Toronto grassroots community health magazine The Local [@thelocalhealth] did an eye opening piece recently on medical deserts https://t.co/1o5gX4NVvQ @UHNOpenLab @taimhuynh #Underserved #Overlooked https://t.co/xKWoGbLMC6 |
| Joe Babaian 🇺🇦 @JoeBabaian RT @ThePatientsSide: T1: T1: I have worked hard to change things for patients by working with rare disease organizations like @curejm and @GlobalGenes and by cofounding @caresync. Try to give hope and stand with them in the fight #hcldr |
| Matthew Loxton is also on Mastodon @mloxton @ShereesePubHlth @SinaiHealth Wow.. Trifecta #hcldr |
| Lisa Danielpour @LisaDani @LeeBeckerDC @DrKittyMD Totally agree as parent of 18 yr old son w severe Crohns and another son w other issues. That transition to adult care docs is critical plus learning self-care yet challenging. Many are working on it but it's a dire need I'm passionate re helping w. #hcldr |
| Beth Steckler (she/her) @purplemamabear RT @LisaDani: T2: T2: Our health care system & medical professionals are so stretched, stressed, makes hard to handle populations w unique needs or who don't voice them. Offer more social workers, psychologists for those needs, new approaches ie comprehensive care in 1 locatn for populatns #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @ThePatientsSide @curejm @GlobalGenes And we thank you so much for doing what you do Amy! :) #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @dlschermd: @mgallagherUSA T2: @mgallagherUSA T2: Financial resources need to used wisely. More common problems utilize the most resources. $ can be saved by providing for more care at home. Tech can help. Forgotten pts and caregivers need to advocate. My sis fought her ins comp. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @BarbyIngle Precisely what I have at @McGillMed & @cusm_muhc 😁 #hcldr https://t.co/MaGaA3TdLH |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @hcldr T2. The universal healthcare law passed recently in the Philippines. In a country with geographically isolated areas, access to healthcare is a problem. Telemedicine is an option being explored but also not enough doctors or nurses (we supply the world). #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @endocrine_witch: @hcldr T2. The universal healthcare law passed recently in the Philippines. In a country with geographically isolated areas, access to healthcare is a problem. Telemedicine is an option being explored but also not enough doctors or nurses (we supply the world). #hcldr |
| Amy Gleason @ThePatientsSide T2: not that it is the sole answer but patient communities can help provide nudging, support, hope, and resources #hcldr |
| Patricia Bath, MBA, MSN, RN-BC @PatriciaCarolyn @RareCandace There seems to be a generational difference between a fixed mindset re: treatment and a growth mindset #hcldr |
| Lee Becker @LeeBeckerDC @EMoriartyWade She sounds powerful and has an amazing mom! Healthcare systems must ensure that families/caregivers are fully integrated and have an important voice in the care journey. #hcldr |
| Erin Moriarty Wade @EMoriartyWade T2. I interviewed a Native American man who was 67 and had no idea he was supposed to have had a colonoscopy at 50. When he got one, he learned he had early-stage colon cancer. #hcldr https://t.co/nytWIEPvmA |
| Joe Babaian 🇺🇦 @JoeBabaian RT @ThePatientsSide: T2: T2: not that it is the sole answer but patient communities can help provide nudging, support, hope, and resources #hcldr |
| Michael W. Roberts @michaelwroberts RT @jamesian: @EMoriartyWade @michaelwroberts @GilmanFamily @hcldr In large metro areas, there are "adolescent" pediatricians who specialize in caring for teens until 21. https://t.co/pNIQJ7A8FB #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @H_SalemOaks: @EMoriartyWade I'd add to that, people who have fine health literacy, but don't believe they're sick or sick enough to need care. People who know they need care, but have too many obstacles (childcare, needing to work...) so they stay quiet or put it off. #hcldr |
| Laura Appel @lauradianeappel @pfanderson @grebeccahaines More investment in time/people before we worry about the #tech. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @lauradianeappel: @pfanderson @grebeccahaines More investment in time/people before we worry about the #tech. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @EMoriartyWade: T2. I interviewed a Native American man who was 67 and had no idea he was supposed to have had a colonoscopy at 50. When he got one, he learned he had early-stage colon cancer. #hcldr https://t.co/nytWIEPvmA |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T2 #hcldr The "problem with being undiagnosed, and with a #raredisease, is that there’s no clear pathway for you ⤵️ Without having a diagnosis or something to pin things down on, you get passed from one place to the next" ~ Parent @inclusivehome https://t.co/Npf8xTfSK3 https://t.co/aULEkCIvg0 |
| Erin Moriarty Wade @EMoriartyWade @H_SalemOaks Absolutely great points @H_SalemOaks! #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @hcldr: Time for T3: Time for T3: Who has responsibility for patient/caregiver education, access, direction, and followup? How can these roles be shared? #hcldr https://t.co/N3tico7MB5 |
| David Lee Scher, MD @dlschermd @mgallagherUSA Insurance companies have an inherent conflict of interest. Forgotten pts are more costly, re:drugs and resources. Need payers who specialize in these patients. Idea: Can non-profits merge resources for such an entity? #hcldr |
| Barby Ingle Official @BarbyIngle @SandraWoodsMtl @mcgillu @McGillMed thanks, developed in the 70's appreciate the correction. not having a good thinking day w/ the migraine. I have studied the scale in social psyc classes and as a pain patient, and taken it with diff providers over the years. #hcldr |
| Amy Gleason @ThePatientsSide Designing solutions WITH patients and not for them can help #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T2 #hcldr Medical students still taught: "If you hear hoofbeats, look for horses not zebras"⤵️ But this leads to diagnostic delays for #RareDisease patients⤵️ That's why we call ourselves zebras🦓 Some med student groups trying to correct this, eg @McGill_rareDIG @McGillMed https://t.co/On1gn7q6l6 |
| Mary Gallagher @mgallagherUSA @dlschermd Im a Huge proponent of care at home + as I visit our families across America I see every type of service now being offered at home. Care has GONE to the HOME. I think it is the best 4 letter word in healthcare (beside cure+care of course). #hcldr |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @hcldr T2 #hcldr we lack a lot in coordinated care where I live which in itself has shown to do things like increase ER visits. Asking patients from multiple arenas would go far in life. The uniqueness of remote areas posing a particular challenge #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @jamesian: @TheBingle Someone told me - if you live in a less-populated county with only one neurologist? Don't ever get on his/her bad side. Was creepy to ponder. #hcldr Journalists ask Qs without regard to impact. |
| Barby Ingle Official @BarbyIngle T3: The responsibility is w all involved n healthcare. We all need 2 take responsibility & do R part. Relying solely on creators, researchers, pros, leg, or PTs will never fix parts that need help. Do your part, its going 2 b different 4 each of us just like R health needs #hcldr |
 | Enlightening Results 💡 @GraceCordovano T2) Nets are used to catch things. Unfortunately, the nets we are using are letting too many people slip through the holes. We need building blocks rooted in: 👉Healthcare Experience Literacy 👉#PeerHealthSupport 👉#Empathy 👉#DigitalTech 👉Partnership #hcldr https://t.co/TNH1qY2HIY |
| Nathan Grunewald MD MBA FACS @NathanGrunewald T3 Everyone associated with healthcare bears some of the responsibility in patient care. The system must be designed in a way so it can be successful, efficient, progressive, and solvent. P.S. We have a loooong way to go... #hcldr https://t.co/fGU3leg4VO |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @mgallagherUSA: @dlschermd Im a Huge proponent of care at home + as I visit our families across America I see every type of service now being offered at home. Care has GONE to the HOME. I think it is the best 4 letter word in healthcare (beside cure+care of course). #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @SandraWoodsMtl: T2 #hcldr Medical students still taught: T2 #hcldr Medical students still taught: "If you hear hoofbeats, look for horses not zebras"⤵️ But this leads to diagnostic delays for #RareDisease patients⤵️ That's why we call ourselves zebras🦓 Some med student groups trying to correct this, eg @McGill_rareDIG @McGillMed https://t.co/On1gn7q6l6 |
 | Alzheimer's Los Angeles @AlzheimersLA RT @EMoriartyWade: T2. Healthcare is often designed to meet the needs of people who know they need healthcare. Outreach programs, health literacy initiatives, mobile mammograms, etc. can help reach people who don’t necessarily know what they need. #hcldr |
| Mary Gallagher @mgallagherUSA RT @BarbyIngle: T3: T3: The responsibility is w all involved n healthcare. We all need 2 take responsibility & do R part. Relying solely on creators, researchers, pros, leg, or PTs will never fix parts that need help. Do your part, its going 2 b different 4 each of us just like R health needs #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @SandraWoodsMtl: T1 #hcldr And long-term *care* ⤵️ "What patients in the long-term care system need to fear is not individual killers, but a culture of indifference that allows inadequate & second-rate care to be accepted as the norm" ~ @picardonhealth @globeandmail https://t.co/oiZ3mNqv9j |
| Erin Moriarty Wade @EMoriartyWade @jamesian @michaelwroberts @GilmanFamily @hcldr I would absolutely love if we could keep our favorite specialist until age 21! I dread the day she tells me she’s retiring 😬 #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @H_SalemOaks: @EMoriartyWade I'd add to that, people who have fine health literacy, but don't believe they're sick or sick enough to need care. People who know they need care, but have too many obstacles (childcare, needing to work...) so they stay quiet or put it off. #hcldr |
| Heather McCullen @H_SalemOaks T3: Not a lot of answers to this question ... and I think it's because it feels impossible to answer. You can't say patients/caregivers have that responsibility ... but in most cases they do have to take it upon themselves to learn. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @mgallagherUSA: T1. And we are able to engage those families... some the system looked past. We care for Iraqi refugees to families who moved here post the hurricane in PR. Our families speak more than 40 languages. It truly does come down to trust + respect. #hcldr |
| Bingle @TheBingle Just a caveat.... Sometimes... perhaps often... Drs. jump the gun when prescribing Rx's or rushing to treatment. #hcldr |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO Hi #HCLDR! Chuck here! []-) |
 | Susanna Guzman @SusannaEGuzman RT @lauradianeappel: @pfanderson @grebeccahaines More investment in time/people before we worry about the #tech. #hcldr |
| Lisa Danielpour @LisaDani @LeeBeckerDC @EMoriartyWade So agree, we had so many challenges for my teen son dealing with horrible Crohn's pain. Found that teen's pain can be dismissed by some professionals. Palliative care was awesome. Thankfully he's doing better but still lives w chronic pain but have great team now. #hcldr |
| Valerie Simon @ValerieSimon RT @ThePatientsSide: Designing solutions WITH patients and not for them can help #hcldr |
| Erin Moriarty Wade @EMoriartyWade @LeeBeckerDC That’s very kind of you to say, thanks so much @LeeBeckerDC! #hcldr |
 | B2B HealthTech Experts @eViRaHealth RT @IrmaRaste: #hcldr T1: #hcldr T1: As a caregiver for loved ones! Elderly bedridden grandparents w/ limited ability to demand better care in a nursing home. Post-op rehab for my father in a carefully chosen Cambridge, MA facility that turned out to be a nightmare. How do #patients manage w/o advocates?? |
| Patricia Bath, MBA, MSN, RN-BC @PatriciaCarolyn T3 Everyone! The patient, caregivers, healthcare providers, anyone who has a stake in your health. It’s not a finite responsibility of just one person but an ongoing effort by all #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @wareFLO Hey Chuck! How are ya! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @BarbyIngle As have I, first managing a research ethics board and then as a CRPS patient I find that my #chronicpain and #raredisease #CRPS advocacy & awareness-raising works best using the simplest tools Perhaps your audience/goals are different #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Part of the problem is that we see modern healthcare as an individual issue, not a community one. That’s a missed opportunity to reach people who might otherwise fall through the cracks. #hcldr |
| Bingle @TheBingle Sad reality is human reactions when questioned. #hcldr |
| Lee Becker @LeeBeckerDC @hcldr T3 - in ideal state it requires one case manager that is the accountable where is orchestrating the care journey. Every moment that matters on journey requires enablement by data, tools, tech and engagement. Must be addressed in a multi-pronged/modal w/ #ptexp approach. #hcldr |
| Lisa Danielpour @LisaDani @EMoriartyWade @LeeBeckerDC My son now has a high tolerance for pain too. Sadly they get used to a baseline of chronic pain and medical procedures but was glad to see him adjusting well over time and trying to help others. #hcldr |
| Laura Appel @lauradianeappel T3 One thing I have started thinking about is making a case for including reimbursement for support services in claim payments to hospitals/physicians. Not the “answer” to this but maybe a piece? #hcldr |
| David Lee Scher, MD @dlschermd @BarbyIngle T3: I think that those who profit most (yup, healthcare is a biz) should provide resources for caregivers and patients (education, navigation assistance, home resources). Big health systems and payers! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T3 #hcldr In some hospitals & healthcare organizations, there needs to be a culture change ↔️ Away from overly paternalistic view of patients, towards an approach of evaluating their capacity to understand... https://t.co/redUoJw9A3 |
| Enlightening Results 💡 @GraceCordovano T3) Unfortunately, it's only until you learn that no one is coming to save you that you realize you need to #GSD yourself. #PeerHealthSupport is an excellent starting point for anyone that gets any diagnosis. Walk together. Lift up others. Don't take no for an answer. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @NathanGrunewald: T1 Patients doing well is the primary goal for most patients & clinicians. These patients are often viewed as “easier” & help clinicians get through days with other complicated encounters. But, there is much to learn from well patients managing their chronic disease. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T3 #hcldr We increasingly need to include, in considering patient education, the issue of medical misinformation via Dr. @EricTopol |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @AlzheimersLA: Part of the problem is that we see modern healthcare as an individual issue, not a community one. That’s a missed opportunity to reach people who might otherwise fall through the cracks. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T3 #hcldr A consequence of forgotten patients? ⤵️ Although #patientsafety "is a key component of high-quality health care delivery as well as an expectation among patients & caregivers" ⤵️ 5.9% of hospital admissions involved harm to patients!! via @CMAJ https://t.co/iniwxDD5Pe |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T3 #hcldr A consequence of forgotten patients? ⤵️ Although #patientsafety "is a key component of high-quality health care delivery as well as an expectation among patients & caregivers" ⤵️ 5.9% of hospital admissions involved harm to patients!! via @CMAJ https://t.co/iniwxDD5Pe |
| Erin Moriarty Wade @EMoriartyWade @LisaDani @LeeBeckerDC I’m so sorry @LisaDani. I really hate to hear that. Thankfully he has you as a SuperMom! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T3 #hcldr We increasingly need to include, in considering patient education, the issue of medical misinformation via Dr. @EricTopol |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @EMoriartyWade There's multiple issues pitting minority populations against healthcare systems in the U.S.. Trust is a big issue; lack of culturally sensitive care & compassion are others. #hcldr |
| christymaginn @christymaginn RT @EMoriartyWade: T2. I interviewed a Native American man who was 67 and had no idea he was supposed to have had a colonoscopy at 50. When he got one, he learned he had early-stage colon cancer. #hcldr https://t.co/nytWIEPvmA |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @hcldr T3: That's a tricky one! So much in effect should be patient led. But those systems should be given individual consideration. If I was honest with myself, I'd say sometimes I dont want to be the ultimate decider. 13 years in my heart is tired. #hcldr |
| David Lee Scher, MD @dlschermd T3: Why Navigating the System is More Important than Healthcare Itself | The Digital Health Corner #hcldr https://t.co/mNtBfvgYVb |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @SandraWoodsMtl: T3 #hcldr A consequence of forgotten patients? ⤵️ Although #patientsafety "is a key component of high-quality health care delivery as well as an expectation among patients & caregivers" ⤵️ 5.9% of hospital admissions involved harm to patients!! via @CMAJ https://t.co/iniwxDD5Pe |
| Joe Babaian 🇺🇦 @JoeBabaian RT @RaeofSunshine79: @hcldr T3: @hcldr T3: That's a tricky one! So much in effect should be patient led. But those systems should be given individual consideration. If I was honest with myself, I'd say sometimes I dont want to be the ultimate decider. 13 years in my heart is tired. #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @ShereesePubHlth: @EMoriartyWade There's multiple issues pitting minority populations against healthcare systems in the U.S.. Trust is a big issue; lack of culturally sensitive care & compassion are others. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T3 #hcldr In some hospitals & healthcare organizations, there needs to be a culture change ↔️ Away from overly paternalistic view of patients, towards an approach of evaluating their capacity to understand... https://t.co/redUoJw9A3 |
| Mary Gallagher @mgallagherUSA T3. Any player across the health eco-system bears responsibility + we shouldn't assume only the primary care should drive it. We truly need BETTER COLLABORATION amongst all the players > that is when the patient+family and the system benefits the most. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch T3. Healthcare navigation is a function of the primary care physician, in the Philippines universal healthcare law. But as we don't have enough, patient groups are essential. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @dlschermd: @BarbyIngle T3: @BarbyIngle T3: I think that those who profit most (yup, healthcare is a biz) should provide resources for caregivers and patients (education, navigation assistance, home resources). Big health systems and payers! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @lauradianeappel: T3 One thing I have started thinking about is making a case for including reimbursement for support services in claim payments to hospitals/physicians. Not the “answer” to this but maybe a piece? #hcldr |
| Beth Steckler (she/her) @purplemamabear T3 I think it should be collective and embedded in care. Team as well as caregiver and patient but we must have access to supports. Sadly insurance does not support model that allows for this. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Caregivers aren’t patients per se, but they’re at high risk for stress & stres-related health issues, and are largely overlooked. #hcldr |
| Kez! @denniskenez #hcldr T2 very impressive Sandra. I'm a believer that so much understanding starts with the initial training. Comments here will be well directed to Med School leaders everywhere. Cheers! |
| Joe Babaian 🇺🇦 @JoeBabaian @LisaDani @EMoriartyWade @LeeBeckerDC Very sad. #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald @lauradianeappel ...and the cost for required and ever changing regulatory tracking and reporting. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @LeeBeckerDC: @hcldr T3 - in ideal state it requires one case manager that is the accountable where is orchestrating the care journey. Every moment that matters on journey requires enablement by data, tools, tech and engagement. Must be addressed in a multi-pronged/modal w/ #ptexp approach. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @ShereesePubHlth Absolutely so true. Thanks for bringing that up! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @wareFLO Welcome Chuck! #hcldr |
| David Lee Scher, MD @dlschermd RT @denniskenez: #hcldr T2 very impressive Sandra. I'm a believer that so much understanding starts with the initial training. Comments here will be well directed to Med School leaders everywhere. Cheers! |
| Bingle @TheBingle T3 The professionals need to open their minds to suggestions. Something may be better even if the patient comes up with the idea. #hcldr |
| Josh Ang @iJoshAng @H_SalemOaks T3: I agree, it’s easy to attribute to improving teamwork, but so many ways on “how” to solve the issue. Unique circumstances must be recognized and multiple approaches employed #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @H_SalemOaks: T3: T3: Not a lot of answers to this question ... and I think it's because it feels impossible to answer. You can't say patients/caregivers have that responsibility ... but in most cases they do have to take it upon themselves to learn. #hcldr |
| Michael W. Roberts @michaelwroberts @EMoriartyWade T2. The “outbound” communication needs for healthcare are so difficult to measure in terms of understanding impact / value, but the individual instances of failure are heartbreaking. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @PatriciaCarolyn: T3 Everyone! The patient, caregivers, healthcare providers, anyone who has a stake in your health. It’s not a finite responsibility of just one person but an ongoing effort by all #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @H_SalemOaks: T3: T3: Not a lot of answers to this question ... and I think it's because it feels impossible to answer. You can't say patients/caregivers have that responsibility ... but in most cases they do have to take it upon themselves to learn. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @jamesian: @endocrine_witch Geriatricians know - and try to remove meds that have "dizziness" as side effect for ppl at risk for falls, but general population needs to be aware. #hcldr #bioethics |
| Joe Babaian 🇺🇦 @JoeBabaian RT @NathanGrunewald: T3 Everyone associated with healthcare bears some of the responsibility in patient care. The system must be designed in a way so it can be successful, efficient, progressive, and solvent. P.S. We have a loooong way to go... #hcldr https://t.co/fGU3leg4VO |
| Enlightening Results 💡 @GraceCordovano T3) The US education system needs to be held responsible. We need to prepare the next generation to be informed, proactive members of the US health care system. https://t.co/1847uRUT7R #hcldr |
| Lee Becker @LeeBeckerDC @BarbyIngle Agree. This can be in place with a defined matrixed structure with clear accountability is key. Having an ooda loop in place to ensure continuous learning and improvement. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @GraceCordovano: T2) Nets are used to catch things. Unfortunately, the nets we are using are letting too many people slip through the holes. We need building blocks rooted in: 👉Healthcare Experience Literacy 👉#PeerHealthSupport 👉#Empathy 👉#DigitalTech 👉Partnership #hcldr https://t.co/TNH1qY2HIY |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO @GraceCordovano I love Legos... #hcldr ... as a metaphor for many things (and highly appropriate in this case), and to actually build stuff with! https://t.co/1zI7BlBPSe |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @denniskenez #hcldr Thanks so much Dennis! Every little bit helps, for raising awareness 🤗 |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO RT @GraceCordovano: T2) Nets are used to catch things. Unfortunately, the nets we are using are letting too many people slip through the holes. We need building blocks rooted in: 👉Healthcare Experience Literacy 👉#PeerHealthSupport 👉#Empathy 👉#DigitalTech 👉Partnership #hcldr https://t.co/TNH1qY2HIY |
| Patricia Bath, MBA, MSN, RN-BC @PatriciaCarolyn @SandraWoodsMtl @EricTopol Yes!!! Tools to separate fact from fiction should be included in all education, medical and otherwise #hcldr |
| Barby Ingle Official @BarbyIngle RT @LeeBeckerDC: @BarbyIngle Agree. This can be in place with a defined matrixed structure with clear accountability is key. Having an ooda loop in place to ensure continuous learning and improvement. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @GraceCordovano Really great seeing you Grace! Glad you are here! :) #hcldr |
| Bingle @TheBingle RT @GraceCordovano: T3) Unfortunately, it's only until you learn that no one is coming to save you that you realize you need to #GSD yourself. #PeerHealthSupport is an excellent starting point for anyone that gets any diagnosis. Walk together. Lift up others. Don't take no for an answer. #hcldr |
| Lisa Danielpour @LisaDani @DrKittyMD @GotTransition2 Thanks so much, Dr. O'Hare, I'll check them out. My son's pediatric GIs at @UHRainbowBabies and @NIHClinicalCntr are terrific about coaching him on self-care and gradually taking over his own advocacy and care. His transition to adult care doctors for Crohns is at 21 #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @NathanGrunewald: T3 Everyone associated with healthcare bears some of the responsibility in patient care. The system must be designed in a way so it can be successful, efficient, progressive, and solvent. P.S. We have a loooong way to go... #hcldr https://t.co/fGU3leg4VO |
| Joe Babaian 🇺🇦 @JoeBabaian RT @ThePatientsSide: Designing solutions WITH patients and not for them can help #hcldr |
| Bingle @TheBingle RT @ShereesePubHlth: @EMoriartyWade There's multiple issues pitting minority populations against healthcare systems in the U.S.. Trust is a big issue; lack of culturally sensitive care & compassion are others. #hcldr |
| Mary Gallagher @mgallagherUSA T3. We also need a SYSTEM that has the right financial incentives in place to engage the family caregiver + stop walking past them. Im biased w the work I do, but damn, caregivers are the eyes + ears and they make a HUGE difference in care. #HCLDR |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @GraceCordovano: T2) Nets are used to catch things. Unfortunately, the nets we are using are letting too many people slip through the holes. We need building blocks rooted in: 👉Healthcare Experience Literacy 👉#PeerHealthSupport 👉#Empathy 👉#DigitalTech 👉Partnership #hcldr https://t.co/TNH1qY2HIY |
| Joe Babaian 🇺🇦 @JoeBabaian RT @GraceCordovano: T3) The US education system needs to be held responsible. We need to prepare the next generation to be informed, proactive members of the US health care system. https://t.co/1847uRUT7R #hcldr |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO @JoeBabaian Yo! #hcldr https://t.co/cOE51dpLSr |
| Barby Ingle Official @BarbyIngle RT @TheBingle: T3 The professionals need to open their minds to suggestions. Something may be better even if the patient comes up with the idea. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @mgallagherUSA: T3. We also need a SYSTEM that has the right financial incentives in place to engage the family caregiver + stop walking past them. Im biased w the work I do, but damn, caregivers are the eyes + ears and they make a HUGE difference in care. #HCLDR |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO @bonniesheeren #HCLDR! https://t.co/cM8XEDBjL0 |
 | Sahba Ferdowsi DO (conciergedoc) @DrFerdowsi RT @GraceCordovano: T3) The US education system needs to be held responsible. We need to prepare the next generation to be informed, proactive members of the US health care system. https://t.co/1847uRUT7R #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson I don't know what's going on with twitter tonight. It is not showing me the #hcldr tweets! #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Love the language communities have adopted to talk about themselves. It’s so important that health care professionals know this, too. #hcldr #languagematters |
| Enlightening Results 💡 @GraceCordovano @JoeBabaian Thrilled to be able to make it Joe! Great to see you & everyone. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @BarbyIngle @mcgillu @McGillMed Oh no, hope the migraine creeps away quickly! #hcldr https://t.co/GcZTjEHt3Z |
| Joe Babaian 🇺🇦 @JoeBabaian @pfanderson Weird! I am using Tweetdeck and it seems ok so far.... #hcldr |
| Christina Gilman @GilmanFamily @hcldr T3: I think I have the responsibility for educating myself. Mind you it would be nice to have a primary care physician who has the resources to help me educate myself. I feel horrible all the time, if I go over the 10 min. Not everyone is the same and need more help #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @GilmanFamily: @hcldr T3: @hcldr T3: I think I have the responsibility for educating myself. Mind you it would be nice to have a primary care physician who has the resources to help me educate myself. I feel horrible all the time, if I go over the 10 min. Not everyone is the same and need more help #hcldr |
| Sally James @jamesian T3 - Family and caregivers should take perhaps MORE responsibility for understanding nuances with chronic disease patient. Family self-education is crucial to health of their family member. #hcldr Public libraries + other community centers could provide more education! |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T3 We all do. All stakeholders have an an investment in #healthliteracy. Lack of education, direction, & followup is costing us all. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @AlzheimersLA: Love the language communities have adopted to talk about themselves. It’s so important that health care professionals know this, too. #hcldr #languagematters |
| Enlightening Results 💡 @GraceCordovano @LisaDani @DrKittyMD @GotTransition2 @UHRainbowBabies @NIHClinicalCntr So happy to hear that Lisa. Thank goodness you are by his side to also play such a critical role. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @AlzheimersLA Happy you are with us tonight :) :) #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @JoeBabaian I haven't used Tweetdeck in years, but I may have no choice. #hcldr |
| HCLDR Moderator @hcldr Just 1 min until T4! #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @BarbyIngle: T3: T3: The responsibility is w all involved n healthcare. We all need 2 take responsibility & do R part. Relying solely on creators, researchers, pros, leg, or PTs will never fix parts that need help. Do your part, its going 2 b different 4 each of us just like R health needs #hcldr |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO @GraceCordovano #hcldr https://t.co/mfMmGgxI62 |
| Bingle @TheBingle Twitter can be quite finicky at times to me also. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: Just 1 min until T4! #hcldr |
| Erin Moriarty Wade @EMoriartyWade @lauradianeappel Physicians and researchers at @BostonChildrens recently had some exciting news about how cost analyses using actual claims data showed that a support program for families with asthma can actually save money in just a few years. #hcldr |
| Lee Becker @LeeBeckerDC @LisaDani @EMoriartyWade I’m sorry @LisaDani for your son and your experience. Very insightful to know to learn the pattern where kids chronic pain are being dismissed. Very unfortunate to hear. Will do my part to highlight this to help invoke empathy. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @mgallagherUSA: @dlschermd Im a Huge proponent of care at home + as I visit our families across America I see every type of service now being offered at home. Care has GONE to the HOME. I think it is the best 4 letter word in healthcare (beside cure+care of course). #hcldr |
| Mary Gallagher @mgallagherUSA @RareCandace Family caregivers do the equivalent of hospital care (NAtl Bur Econ Research May 2016) and check out the Home Alone Update from few months back....for more stats. Amazing what these selfless heroes do, 24/7. #hcldr |
| Lisa Danielpour @LisaDani @EMoriartyWade @LeeBeckerDC Thanks so much, @EMoriartyWade, you're obviously a SuperMom, too! I'm grateful to have learned so much to advocate for and find the teams that are best for my son both in expertise and sensitivity, caring. It's been a journey and next is adult care transition #hcldr |
| Michael W. Roberts @michaelwroberts RT @AlzheimersLA: Caregivers aren’t patients per se, but they’re at high risk for stress & stres-related health issues, and are largely overlooked. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @LisaDani: @LeeBeckerDC @EMoriartyWade So agree, we had so many challenges for my teen son dealing with horrible Crohn's pain. Found that teen's pain can be dismissed by some professionals. Palliative care was awesome. Thankfully he's doing better but still lives w chronic pain but have great team now. #hcldr |
| HCLDR Moderator @hcldr Time for T4: In your experience, how do you/can you make the biggest impact on reducing the numbers of forgotten patients? #hcldr https://t.co/hlVCvd6l6E |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO Yes. Twitter can be very, very finicky! #hcldr |
 | Dr. Martha Gulati ♥️🫀❤️🩹🇨🇦 @DrMarthaGulati RT @SandraWoodsMtl: T2 #hcldr Medical students still taught: T2 #hcldr Medical students still taught: "If you hear hoofbeats, look for horses not zebras"⤵️ But this leads to diagnostic delays for #RareDisease patients⤵️ That's why we call ourselves zebras🦓 Some med student groups trying to correct this, eg @McGill_rareDIG @McGillMed https://t.co/On1gn7q6l6 |
| Bingle @TheBingle The deck must be stacked! #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA @jamesian Caregivers are often under lots of stress and overwhelmed, too. Healthcare systems need to make it easy for them, treat caregivers and family as allies in care and treatment. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @SandraWoodsMtl: T2 #hcldr Medical students still taught: T2 #hcldr Medical students still taught: "If you hear hoofbeats, look for horses not zebras"⤵️ But this leads to diagnostic delays for #RareDisease patients⤵️ That's why we call ourselves zebras🦓 Some med student groups trying to correct this, eg @McGill_rareDIG @McGillMed https://t.co/On1gn7q6l6 |
| Zayna Khayat, PhD @ZaynaKhayat RT @mgallagherUSA: @dlschermd Im a Huge proponent of care at home + as I visit our families across America I see every type of service now being offered at home. Care has GONE to the HOME. I think it is the best 4 letter word in healthcare (beside cure+care of course). #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @dlschermd: @mgallagherUSA Insurance companies have an inherent conflict of interest. Forgotten pts are more costly, re:drugs and resources. Need payers who specialize in these patients. Idea: Can non-profits merge resources for such an entity? #hcldr |
| Lee Becker @LeeBeckerDC @lauradianeappel I love the idea to incentivize this- to have the intentional adoption! #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA @JoeBabaian Thanks Joe. Important topic! #hcldr |
| Erin Moriarty Wade @EMoriartyWade T3. A lot of responsibilities fall on physicians and caregivers but in some cases home health nurses can help ease the burden tremendously and empower caregivers to take care of patients at home. I never thought I could give my daughter an IV each month, but I did! #hcldr |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO Sly allusion to Legos? #hcldr |
| Enlightening Results 💡 @GraceCordovano @wordfinga @hcldr Our caregivers are expected to do more & more w/less & less time. I'm pointing a finger at the US education system which is rarely called out & held accountable. We do nothing to teach from K-12 how to be an informed member of the healthcare system #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @AlzheimersLA Exactly! That's why a large part of my awareness-raising is aimed at physicians other healthcare professionals... Many from my days of managing a research ethics board - what's called an Institutional Review Board in the US - across Canada, US, and Mexico #hcldr https://t.co/aG3IM8TkSG |
| Kez! @denniskenez @TheBingle #hcldr https://t.co/APFy68nnpR |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @lauradianeappel: T3 One thing I have started thinking about is making a case for including reimbursement for support services in claim payments to hospitals/physicians. Not the “answer” to this but maybe a piece? #hcldr |
| David Lee Scher, MD @dlschermd Many patients aren’t capable. Health literacy of patients is 23% including college grads. Resources MUST be provided. Most info even if provided leaves the room after the 15 min visit. @EmmiSolutions is a great company doing this. There are others. #hcldr |
| Lee Becker @LeeBeckerDC @EMoriartyWade @lauradianeappel @BostonChildrens This is amazing to hear! If handy, can you share? Always looking for more data in this space. Thank you! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @GraceCordovano: @wordfinga @hcldr Our caregivers are expected to do more & more w/less & less time. I'm pointing a finger at the US education system which is rarely called out & held accountable. We do nothing to teach from K-12 how to be an informed member of the healthcare system #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @EMoriartyWade: T3. A lot of responsibilities fall on physicians and caregivers but in some cases home health nurses can help ease the burden tremendously and empower caregivers to take care of patients at home. I never thought I could give my daughter an IV each month, but I did! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl RT @AlzheimersLA: @jamesian Caregivers are often under lots of stress and overwhelmed, too. Healthcare systems need to make it easy for them, treat caregivers and family as allies in care and treatment. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @LeeBeckerDC: @lauradianeappel I love the idea to incentivize this- to have the intentional adoption! #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @AlzheimersLA: @jamesian Caregivers are often under lots of stress and overwhelmed, too. Healthcare systems need to make it easy for them, treat caregivers and family as allies in care and treatment. #hcldr |
| Bingle @TheBingle The problem is it only takes one bad professional to really make things so much worse. Especially when they don't listen. #hcldr |
| Beth Steckler (she/her) @purplemamabear RT @GraceCordovano: @wordfinga @hcldr Our caregivers are expected to do more & more w/less & less time. I'm pointing a finger at the US education system which is rarely called out & held accountable. We do nothing to teach from K-12 how to be an informed member of the healthcare system #hcldr |
 | Rasu Shrestha MD MBA @RasuShrestha Teamwork makes the dream work. Here's #HCLDR in action. Kudos to the team that's making the magic happen behind @xealthinc and @Babyscripts at @AtriumHealth! #AtriumHealthProud https://t.co/qx4wfAU6wf |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @hcldr: Time for T4: Time for T4: In your experience, how do you/can you make the biggest impact on reducing the numbers of forgotten patients? #hcldr https://t.co/hlVCvd6l6E |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: Time for T4: Time for T4: In your experience, how do you/can you make the biggest impact on reducing the numbers of forgotten patients? #hcldr https://t.co/hlVCvd6l6E |
| Barby Ingle Official @BarbyIngle @SandraWoodsMtl @mcgillu @McGillMed Thx, sitting in the dark, all is blurry, trying not to vomit again or have a seizure... and focus on other stuff to help manage the pain, which is difficult as you know. But I'm ready if I do... #hcldr https://t.co/VqTNeKb9qn |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @dlschermd: Many patients aren’t capable. Health literacy of patients is 23% including college grads. Resources MUST be provided. Most info even if provided leaves the room after the 15 min visit. @EmmiSolutions is a great company doing this. There are others. #hcldr |
| Laura Appel @lauradianeappel T4 Keep moving forward. Even when the scenery isn’t changing progress maybe happening. I am convinced that it is better for the trying. Stopping means going backward. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @dlschermd: Many patients aren’t capable. Health literacy of patients is 23% including college grads. Resources MUST be provided. Most info even if provided leaves the room after the 15 min visit. @EmmiSolutions is a great company doing this. There are others. #hcldr |
| Enlightening Results 💡 @GraceCordovano @EMoriartyWade Love nurses period. It is amazing what carepartners can do with proper education, support, & encouragement. You are amazing Erin! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T4 #hcldr It might help to remember that #PalliativeCare "is an approach, framed within the context of serious illness, where easing suffering is the goal ↔️ So, you just need to be sick & suffering to qualify..." ~ @bjmillermd So many could benefit https://t.co/rJB6brfwcD |
| Alzheimer's Los Angeles @AlzheimersLA RT @GraceCordovano: @EMoriartyWade Love nurses period. It is amazing what carepartners can do with proper education, support, & encouragement. You are amazing Erin! #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald T4 We need to take time to ask critical in-depth questions while creating an authentic therapeutic relationship between clinicians and patients. Only then will we ensure a process that reduces or eliminates forgotten patients. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @mgallagherUSA: @RareCandace Family caregivers do the equivalent of hospital care (NAtl Bur Econ Research May 2016) and check out the Home Alone Update from few months back....for more stats. Amazing what these selfless heroes do, 24/7. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @RasuShrestha: Teamwork makes the dream work. Here's #HCLDR in action. Kudos to the team that's making the magic happen behind @xealthinc and @Babyscripts at @AtriumHealth! #AtriumHealthProud https://t.co/qx4wfAU6wf |
| Alzheimer's Los Angeles @AlzheimersLA RT @lauradianeappel: T4 Keep moving forward. Even when the scenery isn’t changing progress maybe happening. I am convinced that it is better for the trying. Stopping means going backward. #hcldr |
| Lee Becker @LeeBeckerDC @dlschermd @BarbyIngle Agree! We are seeing this on VA end where we see caregivers are so critical in Veterans care. We have a ways to go - but making progress. Excited to share as this evolves. Thankful for @DoleFoundation help in this space. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @EMoriartyWade: @lauradianeappel Physicians and researchers at @BostonChildrens recently had some exciting news about how cost analyses using actual claims data showed that a support program for families with asthma can actually save money in just a few years. #hcldr |
| Kez! @denniskenez RT @NathanGrunewald: T4 We need to take time to ask critical in-depth questions while creating an authentic therapeutic relationship between clinicians and patients. Only then will we ensure a process that reduces or eliminates forgotten patients. #hcldr |
| Barby Ingle Official @BarbyIngle T4: To make the biggest impact on reducing the #'s of forgotten patients I have published 9 books, write monthly columns, blog articles & participated in more than 1k interviews on health topics in 12 years. I share, learn, grow, network, and live it as a chronic patient. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @BarbyIngle @SandraWoodsMtl @mcgillu @McGillMed I am so sorry! This sounds unbelievably miserable! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @RasuShrestha @xealthinc @Babyscripts @AtriumHealth @LevineCancer @LevineChildrens @Colin_Hung @JustinCollierMD @pfanderson @mikebiselli @HealthEugene @CoherenceMed @healthythinker That's definitely #hcldr in action! Woo! Great seeing you my friend! #AtriumHealthProud |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T4 #hcldr e.g. Study on #CRPS prognosis, at a tertiary care pain clinic ↔️ 2 years after end of active treatment by @ChamoGui et al @CanadianPain 2018 #chronicpain https://t.co/gFWZAMmPri https://t.co/zR6GlBjvdK |
| Kez! @denniskenez RT @lauradianeappel: T4 Keep moving forward. Even when the scenery isn’t changing progress maybe happening. I am convinced that it is better for the trying. Stopping means going backward. #hcldr |
 | Shannon (Sartin) West @sartin_shannon RT @ThePatientsSide: T1: T1: I think many women are “forgotten patients” and rare disease patients often feel that way when there are not any FDA approved treatments for them. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA There’s strength in numbers. Places like support groups and online communities can also become advocacy spaces. #hcldr |
| Lee Becker @LeeBeckerDC @AlzheimersLA @jamesian Spot on! Like the way you used “allies”... that is a great way to think about the value as an extension of care team. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @SandraWoodsMtl: T4 #hcldr e.g. Study on #CRPS prognosis, at a tertiary care pain clinic ↔️ 2 years after end of active treatment by @ChamoGui et al @CanadianPain 2018 #chronicpain https://t.co/gFWZAMmPri https://t.co/zR6GlBjvdK |
| Mary Gallagher @mgallagherUSA T4. I think it is about supporting this group of patients in ways that make a difference. Listening to them. Respecting them. Addressing their SDOH. I recall yrs back @ASlavitt said this quote was his inspiration + maybe it inspires us on this chat+ in our work every day #hcldr https://t.co/jkmRmp1SFP |
| Enlightening Results 💡 @GraceCordovano T4) CALL IT OUT EVERY TIME YOU SEE IT. #hcldr |
| Zayna Khayat, PhD @ZaynaKhayat T4. #HCLDR On how to reach the forgotten patients, I take inspiration from the Inner City Health Associates - a group of docs in Toronto created a separate health system for the homeless bottom up - no frills, no bureaucracy https://t.co/pn80UJPXe3 https://t.co/Sx1s4BWlz0 |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T4 #hcldr Patients with #chronicpain suffer ↔️ "a reduction in cognitive abilities... necessary to meet professional & personal responsibilities ⤵️ Executive functioning seem to be one of the most affected abilities" @erikagen et al @CanadianPain 2019 https://t.co/vWoiVq1Lv7 https://t.co/kTaaFBG4tt |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: T4 #hcldr Patients with #chronicpain suffer ↔️ "a reduction in cognitive abilities... necessary to meet professional & personal responsibilities ⤵️ Executive functioning seem to be one of the most affected abilities" @erikagen et al @CanadianPain 2019 https://t.co/vWoiVq1Lv7 https://t.co/kTaaFBG4tt |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T4 Do good work. We're all advocates, clinicians, inventors, writers, disruptors, whatever. We change the narrative by doing good work. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @ZaynaKhayat: T4. #HCLDR On how to reach the forgotten patients, I take inspiration from the Inner City Health Associates - a group of docs in Toronto created a separate health system for the homeless bottom up - no frills, no bureaucracy https://t.co/pn80UJPXe3 https://t.co/Sx1s4BWlz0 |
| Bingle @TheBingle Right now I would expand that a lot! There are kids & adults now that have No Respect for others. In NYC and other places these 'kids' actually just sucker punch people for fun. And they do much more. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @LeeBeckerDC @lauradianeappel @BostonChildrens Here’s the story I wrote for them and it has links to the medical journal article for more analysis. #hcldr https://t.co/UoEt3sqN4k |
| Joe Babaian 🇺🇦 @JoeBabaian RT @GraceCordovano: T4) CALL IT OUT EVERY TIME YOU SEE IT. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @mgallagherUSA: T4. I think it is about supporting this group of patients in ways that make a difference. Listening to them. Respecting them. Addressing their SDOH. I recall yrs back @ASlavitt said this quote was his inspiration + maybe it inspires us on this chat+ in our work every day #hcldr https://t.co/jkmRmp1SFP |
| Enlightening Results 💡 @GraceCordovano RT @BarbyIngle: T4: T4: To make the biggest impact on reducing the #'s of forgotten patients I have published 9 books, write monthly columns, blog articles & participated in more than 1k interviews on health topics in 12 years. I share, learn, grow, network, and live it as a chronic patient. #hcldr |
| Beth Steckler (she/her) @purplemamabear @dlschermd @EmmiSolutions I don’t necessarily degree. I think some inds May struggle to understand but I think far more often there are barriers that med team unaware of that can get in way. Question such as are you able to do x or are there reasons you can’t? May expose barriers #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @wordfinga @PatriciaCarolyn @SandraWoodsMtl @EricTopol When dispelling, please include listening to understand what benefits the traditional treatments might offer and what we can learn from them. #hcldr |
| Christina Gilman @GilmanFamily @hcldr T4 - By storytelling my experience and exposing the barriers and working with all and brainstorming workarounds for the barriers. Twitter has been a great outlet! As well as the weekly hcldr tweet chats. #hcldr |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO Donning my workflow hat: Humans are, well, human. We forget. But we can also build systems & workflows to compensate for our flaws. Just as workflow tech can remind us of a critical but unattended to task, if we build system to remind us of otherwise forgotten patients... #hcldr |
| Beth Steckler (she/her) @purplemamabear RT @NathanGrunewald: T4 We need to take time to ask critical in-depth questions while creating an authentic therapeutic relationship between clinicians and patients. Only then will we ensure a process that reduces or eliminates forgotten patients. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @SandraWoodsMtl @EricTopol Yes and for the Philippines, much health misinformation on social media. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @SandraWoodsMtl: T4 #hcldr Patients with #chronicpain suffer ↔️ "a reduction in cognitive abilities... necessary to meet professional & personal responsibilities ⤵️ Executive functioning seem to be one of the most affected abilities" @erikagen et al @CanadianPain 2019 https://t.co/vWoiVq1Lv7 https://t.co/kTaaFBG4tt |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @EMoriartyWade: @LeeBeckerDC @lauradianeappel @BostonChildrens Here’s the story I wrote for them and it has links to the medical journal article for more analysis. #hcldr https://t.co/UoEt3sqN4k |
| Lee Becker @LeeBeckerDC @GraceCordovano @wordfinga @hcldr Great idea to incorporate in to K-12. As a young teen I had to become a caregiver. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @LeeBeckerDC: @AlzheimersLA @jamesian Spot on! Like the way you used “allies”... that is a great way to think about the value as an extension of care team. #hcldr |
| Lisa Danielpour @LisaDani @LeeBeckerDC @EMoriartyWade Thanks so much, @LeeBeckerDC. I know most people are doing their best. Discussing pain w kids is complex in rushed environmt. When doctor asks do you have pain, he hears Q as having pain now. 1 to 10 pain scale rating for chronic illness is diff if you're used to pain at 5 #hcldr |
| Josh Ang @iJoshAng @wareFLO Thanks for bringing this up, I was initially thinking digital solutions to manage large patient populations #hcldr |
| Lee Becker @LeeBeckerDC @EMoriartyWade @lauradianeappel @BostonChildrens Amazing! Thank you for sharing! #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @SandraWoodsMtl @erikagen @CanadianPain So interesting! Before I had my hip surgery & had unremitting pain, had trouble remembering my phone # at times? Or other important info? Now that's resolved, feeling like I can think more clearly? Will have to research this more! #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @ShereesePubHlth: T3 We all do. All stakeholders have an an investment in #healthliteracy. Lack of education, direction, & followup is costing us all. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @GraceCordovano Thank you @GraceCordovano! Our nurses have always been absolutely amazing! I will never forget her telling me “I’m going to show you how to do this, but then next time you are going to do it by yourself.” #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @jamesian: T3 - Family and caregivers should take perhaps MORE responsibility for understanding nuances with chronic disease patient. Family self-education is crucial to health of their family member. #hcldr Public libraries + other community centers could provide more education! |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @wordfinga @PatriciaCarolyn @EricTopol #hcldr But it is important to realize that there is a role for traditional healing within healthcare, for example incorporating indigenous healing has been shown to benefit Canada's many indigenous cultures & peoples https://t.co/DSLgIsmTJz |
| Beth Steckler (she/her) @purplemamabear T4 for our particular sit started foubdation and support group. Families mentor other families, have helpful tips etc. encourage the ‘what if’ question and dev plan. #education and #empowerment #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Just a reminder: We're off this week but will be back next week with a preview that was suggested by @hitlikeagirlpod guest @jhoronjeff #htreads #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @AlzheimersLA: Love the language communities have adopted to talk about themselves. It’s so important that health care professionals know this, too. #hcldr #languagematters |
| Kez! @denniskenez #hcldr T4 Chuck I believe you're on to something good here. Cheers Brother! |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @NathanGrunewald: T4 We need to take time to ask critical in-depth questions while creating an authentic therapeutic relationship between clinicians and patients. Only then will we ensure a process that reduces or eliminates forgotten patients. #hcldr |
| David Lee Scher, MD @dlschermd T4: First and foremost I think that forgotten patients need to no longer be forgotten. Other societal disenfranchised groups have made great strides. We should learn from them. We can’t boycott payers but we can shake them up. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @lisadbudzinski #hcldr I knew you'd love my #raredisease zebra-stripe boots!! |
| Mary Gallagher @mgallagherUSA T4. Also, I never thought Id see the day when my experience working at the Ritz Carlton Hotel company would cross the healthcare world but this chat tonight reminded me of their motto + it is spot on for this chat."We are ladies and gentlemen serving ladies and gentlemen."#hcldr https://t.co/pipLU5i119 |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @ZaynaKhayat: T4. #HCLDR On how to reach the forgotten patients, I take inspiration from the Inner City Health Associates - a group of docs in Toronto created a separate health system for the homeless bottom up - no frills, no bureaucracy https://t.co/pn80UJPXe3 https://t.co/Sx1s4BWlz0 |
| Bingle @TheBingle T4 There's a need for Truth in every aspect these days. I blame the media & in some cases medicine. There is so much Fake News it's horrible. Viewer Beware... #hcldr |
| Brad Lehman @brad_lehman #hcldr T2 - "What can extend the reach?" - Learning how to think and act outside our daily perception - As individuals, we have limited energy each day. Just talking about this tonight is helping us think more about those who are forgotten. #empathy - Every person counts! |
| Lisa Danielpour @LisaDani @DrKittyMD @TheComfAbility Agree, especially in chronic disease. Rating pain 1 to 10 or with face icons when a kid is used to pain is subjective vs child who doesn't. Understand concern we don't want kids on pain meds that can hurt them & their developmt, need multi-factored approaches. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @EMoriartyWade: @LeeBeckerDC @lauradianeappel @BostonChildrens Here’s the story I wrote for them and it has links to the medical journal article for more analysis. #hcldr https://t.co/UoEt3sqN4k |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @hcldr T4: Innovation in storytelling! I have a support group for families affected by rare disease in my province. When I have a moment, I'm looking to utilize sort of a biopsychosocial overview of life as a patient. Hoping 2 code some common struggles out of it and share widely #hcldr |
| Virginia @PracticalHIT RT @ThePatientsSide: T1: T1: I think many women are “forgotten patients” and rare disease patients often feel that way when there are not any FDA approved treatments for them. #hcldr |
| Barby Ingle Official @BarbyIngle @lisadbudzinski @SandraWoodsMtl @mcgillu @McGillMed I know you all do understand! So sorry for all who go through this crap too! We are making a difference in our outreach and advocacy... doing it for the love and hope that we make a difference in the life of others (& our future care at the same time) #CPS #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Very true for Alzheimer’s and other dementias. #hcldr |
 | Mike Biselli @mikebiselli RT @RasuShrestha: Teamwork makes the dream work. Here's #HCLDR in action. Kudos to the team that's making the magic happen behind @xealthinc and @Babyscripts at @AtriumHealth! #AtriumHealthProud https://t.co/qx4wfAU6wf |
| Erin Moriarty Wade @EMoriartyWade RT @AlzheimersLA: @jamesian Caregivers are often under lots of stress and overwhelmed, too. Healthcare systems need to make it easy for them, treat caregivers and family as allies in care and treatment. #hcldr |
| Enlightening Results 💡 @GraceCordovano @LeeBeckerDC @wordfinga @hcldr Thank you Lee! Being a caregiver is no easy undertaking. More here: https://t.co/1847uRUT7R #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @brad_lehman: #hcldr T2 - "What can extend the reach?" - Learning how to think and act outside our daily perception - As individuals, we have limited energy each day. Just talking about this tonight is helping us think more about those who are forgotten. #empathy - Every person counts! |
| Enlightening Results 💡 @GraceCordovano RT @EMoriartyWade: @LeeBeckerDC @lauradianeappel @BostonChildrens Here’s the story I wrote for them and it has links to the medical journal article for more analysis. #hcldr https://t.co/UoEt3sqN4k |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Have a great week everyone. #hcldr https://t.co/eHu6eLFeze |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @MotionWorksPT @JoeBabaian #hcldr The #PatientsIncluded movement has helped a bit, at least getting Patient Partners at medical conferences & events... to lead the way https://t.co/APAyPJVmBe |
| Josh Ang @iJoshAng @mgallagherUSA Right on, The healthcare industry can learn a lot from the hospitality industry. Customer/patient focus/service and treating others with respect enhances all teams and processes #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @ShereesePubHlth You too!!! #hcldr |
| Rachel Martens ♿️ (she/her) @RaeofSunshine79 @MotionWorksPT @JoeBabaian @hcldr Completely agree!! So sorry to hear of your experience! ❤ #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @dlschermd: T4: T4: First and foremost I think that forgotten patients need to no longer be forgotten. Other societal disenfranchised groups have made great strides. We should learn from them. We can’t boycott payers but we can shake them up. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @wareFLO: Donning my workflow hat: Donning my workflow hat: Humans are, well, human. We forget. But we can also build systems & workflows to compensate for our flaws. Just as workflow tech can remind us of a critical but unattended to task, if we build system to remind us of otherwise forgotten patients... #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @RaeofSunshine79: @hcldr T4: @hcldr T4: Innovation in storytelling! I have a support group for families affected by rare disease in my province. When I have a moment, I'm looking to utilize sort of a biopsychosocial overview of life as a patient. Hoping 2 code some common struggles out of it and share widely #hcldr |
| Lee Becker @LeeBeckerDC @hcldr T4 - #ptexp approach is a great way to help place patient, caregiver, and family as truly first in the care process. Supporting the healthcare team fully and incentivizing approach. Clear alignment/accountability with care coordination/management- and CPI/ooda in place. #hcldr |
| Virginia @PracticalHIT #hcldr #t4 community building cause there is strength in numbers and it stinks to be alone and education as a public health initiative for employees and parents |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @lisadbudzinski #hcldr Right back at you, sweetie!!! My little awareness-raising buddy Max, is sending hugs, and CHOCOLATE!!! https://t.co/ZKBJb14MeE |
| Joe Babaian 🇺🇦 @JoeBabaian RT @dlschermd: T4: T4: First and foremost I think that forgotten patients need to no longer be forgotten. Other societal disenfranchised groups have made great strides. We should learn from them. We can’t boycott payers but we can shake them up. #hcldr |
 | Martin Bohl @mbohl07 RT @ZaynaKhayat: T4. #HCLDR On how to reach the forgotten patients, I take inspiration from the Inner City Health Associates - a group of docs in Toronto created a separate health system for the homeless bottom up - no frills, no bureaucracy https://t.co/pn80UJPXe3 https://t.co/Sx1s4BWlz0 |
| Joe Babaian 🇺🇦 @JoeBabaian RT @wareFLO: Donning my workflow hat: Donning my workflow hat: Humans are, well, human. We forget. But we can also build systems & workflows to compensate for our flaws. Just as workflow tech can remind us of a critical but unattended to task, if we build system to remind us of otherwise forgotten patients... #hcldr |
| Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO @Angenuity Is one drills down on every non-vaporware so-called population health management system, we find a workflow management system, sometimes homegrown, sometimes based on 3rd-party workflow engine (increasingly Business Process Management #BPM based) I have found no exceptions #hcldr |
| HCLDR Moderator @hcldr That’s a wrap. Thank you to everyone who joined in on tonight’s #hcldr chat! Your time, tweets and comments are greatly appreciated. Be sure to help yourself to the resources provided at the end of the blog for further study! https://t.co/5O98kCWCgF |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @RaeofSunshine79: @hcldr T4: @hcldr T4: Innovation in storytelling! I have a support group for families affected by rare disease in my province. When I have a moment, I'm looking to utilize sort of a biopsychosocial overview of life as a patient. Hoping 2 code some common struggles out of it and share widely #hcldr |
| Virginia @PracticalHIT RT @Angenuity: @mgallagherUSA Right on, The healthcare industry can learn a lot from the hospitality industry. Customer/patient focus/service and treating others with respect enhances all teams and processes #hcldr |
| Lisa Danielpour @LisaDani @esteckler2 @bonniesheeren @DrKittyMD Yes, 18 feels too young. It's right time to work on transition skills as my son's medical teams are doing w our help. Esp in complex cases lot to learn & handle well. Pediatric care offers >support so like working on transition skills w them then move to adult care at 21 #hcldr |
| Martin Bohl @mbohl07 RT @ZaynaKhayat: T1. #hcldr Toronto grassroots community health magazine The Local [@thelocalhealth] did an eye opening piece recently on medical deserts https://t.co/1o5gX4NVvQ @UHNOpenLab @taimhuynh #Underserved #Overlooked https://t.co/xKWoGbLMC6 |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @SandraWoodsMtl: @wordfinga @PatriciaCarolyn @EricTopol #hcldr But it is important to realize that there is a role for traditional healing within healthcare, for example incorporating indigenous healing has been shown to benefit Canada's many indigenous cultures & peoples https://t.co/DSLgIsmTJz |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @LisaDani: @DrKittyMD @TheComfAbility Agree, especially in chronic disease. Rating pain 1 to 10 or with face icons when a kid is used to pain is subjective vs child who doesn't. Understand concern we don't want kids on pain meds that can hurt them & their developmt, need multi-factored approaches. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @BarbyIngle: T4: T4: To make the biggest impact on reducing the #'s of forgotten patients I have published 9 books, write monthly columns, blog articles & participated in more than 1k interviews on health topics in 12 years. I share, learn, grow, network, and live it as a chronic patient. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @NathanGrunewald: T4 We need to take time to ask critical in-depth questions while creating an authentic therapeutic relationship between clinicians and patients. Only then will we ensure a process that reduces or eliminates forgotten patients. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA We have a referral program where doctors & social workers can refer people living with a dementia + their caregivers directly to us, and we partner with community centers and healthcare spaces to provide caregiver classes where they’re already receiving other services. #hcldr |
 | Teresa Hartman @thartman2u RT @dlschermd thx to @pfanderson - #hcldr @hcldr @hifa_org #healthinfo4all #healthliteracy @EmmiSolutions @nlm_news @medlineplus #medlibs |
| Joe Babaian 🇺🇦 @JoeBabaian RT @lauradianeappel: T4 Keep moving forward. Even when the scenery isn’t changing progress maybe happening. I am convinced that it is better for the trying. Stopping means going backward. #hcldr |
| Bingle @TheBingle RT @RaeofSunshine79: @hcldr T4: @hcldr T4: Innovation in storytelling! I have a support group for families affected by rare disease in my province. When I have a moment, I'm looking to utilize sort of a biopsychosocial overview of life as a patient. Hoping 2 code some common struggles out of it and share widely #hcldr |
| Erin Moriarty Wade @EMoriartyWade @jamesian There are so many great online resources for this like @teaminspire #hcldr |
| Kez! @denniskenez #hcldr once again Sandra nails an important point to facilitate initial & ongoing medical learning. Cheers! |
| Bonnie C. Sheeren, BCPA @bonniesheeren @hcldr YAY!!! Thx, @JoeBabaian ! See you next week! #hcldr |
| Enlightening Results 💡 @GraceCordovano @SandraWoodsMtl @BarbyIngle A patient introduced me to this pain scale a while ago. While playful, it is the most relatable thing I have come across & many that I share w/laugh as well but agree: https://t.co/NE0d6khbVF. #hcldr |
| HCLDR Moderator @hcldr Don’t forget to use the #hcldr hashtag during the rest of the week for interesting healthcare/leadership posts, pics, articles & news https://t.co/IQaEYEUxFR |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @ZaynaKhayat: T1. #hcldr Toronto grassroots community health magazine The Local [@thelocalhealth] did an eye opening piece recently on medical deserts https://t.co/1o5gX4NVvQ @UHNOpenLab @taimhuynh #Underserved #Overlooked https://t.co/xKWoGbLMC6 |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @MotionWorksPT @JoeBabaian @CMAJ #hcldr This particular study was in Canada, not in a for-profit healthcare/hospital environment... I can't even imagine the US numbers 😳 |
| Virginia @PracticalHIT RT @AlzheimersLA: Very true for Alzheimer’s and other dementias. #hcldr |
| Nathan Grunewald MD MBA FACS @NathanGrunewald Thanks @JoeBabaian! Great #hcldr chat!! Stay well and have a great week. 👊🌈🙂🚀 |
| Mary Gallagher @mgallagherUSA T4. Love what @iorahealth does with their "worry score"> focusing on those that are the high risk/ chronically ill. Or what @CareMoreHealth does w/ constant contact approach- frequent calls/ visits. Stories in 'Prescription for the Future' (great read by Ezekiel Emanuel) #hcldr |
 | Kristen Honey 🐝 @khoney RT @ThePatientsSide: T1: T1: I think many women are “forgotten patients” and rare disease patients often feel that way when there are not any FDA approved treatments for them. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @GilmanFamily: @hcldr T4 - By storytelling my experience and exposing the barriers and working with all and brainstorming workarounds for the barriers. Twitter has been a great outlet! As well as the weekly hcldr tweet chats. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian Thank you all for a great #hcldr chat tonight! It was very personal and very heavy on action as well. Good job! |
| Barby Ingle Official @BarbyIngle RT @LeeBeckerDC: @dlschermd @BarbyIngle Agree! We are seeing this on VA end where we see caregivers are so critical in Veterans care. We have a ways to go - but making progress. Excited to share as this evolves. Thankful for @DoleFoundation help in this space. #hcldr |
| Lee Becker @LeeBeckerDC @hcldr Great session! Thank you all so much! #hcldr |
| Michael W. Roberts @michaelwroberts RT @hcldr: Don’t forget to use the #hcldr hashtag during the rest of the week for interesting healthcare/leadership posts, pics, articles & news https://t.co/IQaEYEUxFR |
| Enlightening Results 💡 @GraceCordovano @SandraWoodsMtl @BarbyIngle Just wanted to say that I'm blown away by how amazing you both are @SandraWoodsMtl @BarbyIngle #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @NathanGrunewald You're very welcome! #hcldr |
| Virginia @PracticalHIT RT @mgallagherUSA: T4. Also, I never thought Id see the day when my experience working at the Ritz Carlton Hotel company would cross the healthcare world but this chat tonight reminded me of their motto + it is spot on for this chat."We are ladies and gentlemen serving ladies and gentlemen."#hcldr https://t.co/pipLU5i119 |
| Joe Babaian 🇺🇦 @JoeBabaian RT @SandraWoodsMtl: @BarbyIngle As have I, first managing a research ethics board and then as a CRPS patient I find that my #chronicpain and #raredisease #CRPS advocacy & awareness-raising works best using the simplest tools Perhaps your audience/goals are different #hcldr |
| Teresa Hartman @thartman2u RT @hcldr -#unmcilead #hcldr #TwitterChat #professionaldevelopment #leadership @2LindaMLove |
| Lisa Danielpour @LisaDani @TheBingle I also think it's a culture issue in some health systems. If you have a pain team and specialists used to treating people coping with pain sensitively vs having an abrupt skeptical attitude esp in populations like teens despite the obvious serious diseases they have #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @GraceCordovano @BarbyIngle There's a better/funnier one, with lightening bolts, etc. I'll see if I can find the link tomorrow... #hcldr |
| Bingle @TheBingle RT @lauradianeappel: T4 Keep moving forward. Even when the scenery isn’t changing progress maybe happening. I am convinced that it is better for the trying. Stopping means going backward. #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @LeeBeckerDC You're welcome! #hcldr |
| Josh Ang @iJoshAng @wareFLO And it’s important to have a relationship of trust built. I suspect there are many patients who may question our motives. Intent needs to be the safety and care, not primarily financial #hcldr |
| Erin Moriarty Wade @EMoriartyWade @DrKittyMD Yes! We tried this recently with my daughter :) #hcldr https://t.co/JF29RzNpji |
 | GARIKINA YELLA RAJU @yella_raju RT @lauradianeappel: T3 One thing I have started thinking about is making a case for including reimbursement for support services in claim payments to hospitals/physicians. Not the “answer” to this but maybe a piece? #hcldr |
| Josh Ang @iJoshAng RT @hcldr: Don’t forget to use the #hcldr hashtag during the rest of the week for interesting healthcare/leadership posts, pics, articles & news https://t.co/IQaEYEUxFR |
| Barby Ingle Official @BarbyIngle @GraceCordovano @SandraWoodsMtl Thanks @GraceCordovano there are so many amazing people here on #hcldr chat! Love it each week I can participate! |
| Amy Gleason @ThePatientsSide @LisaDani @esteckler2 @bonniesheeren @DrKittyMD We finally found adult care that had similar support. Look for it and demand it :) it exists #hcldr |
| Brad Lehman @brad_lehman RT @LeeBeckerDC: @hcldr T4 - #ptexp approach is a great way to help place patient, caregiver, and family as truly first in the care process. Supporting the healthcare team fully and incentivizing approach. Clear alignment/accountability with care coordination/management- and CPI/ooda in place. #hcldr |
| Kez! @denniskenez #hcldr Cheers @JoeBabaian great job tonight. Most positive chat. It starts with the most capable leader! |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @GraceCordovano @BarbyIngle All of #hcldr is... that why we're all here - to try to make things better... Sometimes by shaking things up a bit 😉 https://t.co/m2g1Fh8StB |
| Bingle @TheBingle T5 Thank you JB and all for another great chat in #hcldr Have a great week! |
| Joe Babaian 🇺🇦 @JoeBabaian @denniskenez Humbled. Thank you, Dennis. #hcldr |
| Enlightening Results 💡 @GraceCordovano @SandraWoodsMtl @BarbyIngle I would appreciate that! I often pull this out in the ER or when waiting for drs to round to help patient's describe what they feel like. Always worth the smile & chuckle even when the situation is dire. #hcldr |
| Bonnie C. Sheeren, BCPA @bonniesheeren @LisaDani @esteckler2 @DrKittyMD So true! We have a wraparound Neurofibromatosis clinic here in Houston that sees pts from Day One for the rest of their lives. This is the way it should be! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @GraceCordovano: @SandraWoodsMtl @BarbyIngle A patient introduced me to this pain scale a while ago. While playful, it is the most relatable thing I have come across & many that I share w/laugh as well but agree: https://t.co/NE0d6khbVF. #hcldr |
| David Lee Scher, MD @dlschermd No patient or caregiver is forgotten by great folks at #hcldr. It’s what we do. Looking forward as always to sharing coffee, wine, ideas and chuckles next week. Thanks as always to friends @JoeBabaian and @Colin_Hung |
| Bingle @TheBingle RT @LisaDani: @TheBingle I also think it's a culture issue in some health systems. If you have a pain team and specialists used to treating people coping with pain sensitively vs having an abrupt skeptical attitude esp in populations like teens despite the obvious serious diseases they have #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: Don’t forget to use the #hcldr hashtag during the rest of the week for interesting healthcare/leadership posts, pics, articles & news https://t.co/IQaEYEUxFR |
| Joe Babaian 🇺🇦 @JoeBabaian RT @mgallagherUSA: T4. Love what @iorahealth does with their "worry score"> focusing on those that are the high risk/ chronically ill. Or what @CareMoreHealth does w/ constant contact approach- frequent calls/ visits. Stories in 'Prescription for the Future' (great read by Ezekiel Emanuel) #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @lisadbudzinski Yeah, can sooo relate. The neuropathic pain flares are soooo unpredictable & overwhelming... Feel better-as-can-be - soon!!! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @hcldr: That’s a wrap. Thank you to everyone who joined in on tonight’s #hcldr chat! Your time, tweets and comments are greatly appreciated. Be sure to help yourself to the resources provided at the end of the blog for further study! https://t.co/5O98kCWCgF |
| Lee Becker @LeeBeckerDC @GraceCordovano @wordfinga @hcldr Brilliant @GraceCordovano! Thank you for sharing. Think you are identifying a critical need. Sharing with @fcpsnews for their thoughts. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @dlschermd: No patient or caregiver is forgotten by great folks at #hcldr. It’s what we do. Looking forward as always to sharing coffee, wine, ideas and chuckles next week. Thanks as always to friends @JoeBabaian and @Colin_Hung |
| Joe Babaian 🇺🇦 @JoeBabaian RT @PracticalHIT: #hcldr #t4 community building cause there is strength in numbers and it stinks to be alone and education as a public health initiative for employees and parents |
| Lisa Danielpour @LisaDani @DrKittyMD @esteckler2 @bonniesheeren @AmerAcadPeds Makes sense...I like flexibility for those who want to leave peds at 18, 19 or 21. I agree with @AmerAcadPeds to work on health skills by 12-14. So much to learn & best when it's gradual & developmentally appropriate. I'm honored to be speaking at 2019 AAP Natl Conf on HIT #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @ShereesePubHlth You also my friend! #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian RT @dlschermd: No patient or caregiver is forgotten by great folks at #hcldr. It’s what we do. Looking forward as always to sharing coffee, wine, ideas and chuckles next week. Thanks as always to friends @JoeBabaian and @Colin_Hung |
 | Amy Lynn Miles @amymiles1966 RT @AlzheimersLA: We have a referral program where doctors & social workers can refer people living with a dementia + their caregivers directly to us, and we partner with community centers and healthcare spaces to provide caregiver classes where they’re already receiving other services. #hcldr |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @GraceCordovano: @SandraWoodsMtl @BarbyIngle A patient introduced me to this pain scale a while ago. While playful, it is the most relatable thing I have come across & many that I share w/laugh as well but agree: https://t.co/NE0d6khbVF. #hcldr |
| Lisa Danielpour @LisaDani @ThePatientsSide @esteckler2 @bonniesheeren @DrKittyMD So glad you found it! I love that more health systems are working on idea of medical home for specific chronic illnesses that would have pediatric version then adult one you transition to. #hcldr |
| Enlightening Results 💡 @GraceCordovano @LeeBeckerDC @wordfinga @hcldr @fcpsnews I've discussed this w/my local community school systems. I've been encouraged to design grade appropriate curriculums & submit before the Board of Ed. It's a passion of mine. Happy to share what I have so far #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @LisaDani @TheBingle #hcldr This is why multi-disciplinary pain management units in hospitals are sooo important! Also a shout-out to those in my #bioethics field who are taking on #chronicpain - right here in Csnada! https://t.co/2tWe3p55YF |
| IrmaRaste ✨ InfluenceThroughStorytelling™ @IrmaRaste RT @hcldr: That’s a wrap. Thank you to everyone who joined in on tonight’s #hcldr chat! Your time, tweets and comments are greatly appreciated. Be sure to help yourself to the resources provided at the end of the blog for further study! https://t.co/5O98kCWCgF |
 | Annette McKinnon @anetto RT @SandraWoodsMtl: @LisaDani @TheBingle #hcldr This is why multi-disciplinary pain management units in hospitals are sooo important! Also a shout-out to those in my #bioethics field who are taking on #chronicpain - right here in Csnada! https://t.co/2tWe3p55YF |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl Thanks everyone for another fast-tastic #hcldr chat, with special hugs to @JoeBabaian for the post, topic & moderation! And holiday hugs to @Colin_Hung & his family https://t.co/GRkOtYb7VK |
| Virginia @PracticalHIT pain scale |
| Lee Becker @LeeBeckerDC @GraceCordovano @wordfinga @hcldr @fcpsnews Very forward thinking. The reality is that everyone will be a caregiver at some point especially with heavier reliance on outpatient care. Great to hear how you’ve helped at the highest policy levels. Thank you! #hcldr |
| Kez! @denniskenez #hcldr @GraceCordovano please add my name to your mailing list. Could become a passion of mine as well. Cheers! |
| Enlightening Results 💡 @GraceCordovano @DrKittyMD I whole-heartedly agree. We need to teach what I have coined as healthcare experience literacy incrementally, both at schools from K-12 & during point of care, so the next generation can learn HOW to be an informed, engaged member in their care & the healthcare system #hcldr |
| Joe Babaian 🇺🇦 @JoeBabaian @SandraWoodsMtl @Colin_Hung Sandra, what a warm thank you from you! Hugs back, I appreciate your support! And cheers to @Colin_Hung on vacation! #hcldr |
| Lisa Danielpour @LisaDani @DrKittyMD @esteckler2 @bonniesheeren @AmerAcadPeds I'm part of the #COCIT program on Sunday, Oct 27, providing parent perspective on panel presentation. We're still in planning stage :) so will know more soon #hcldr |
 | Andrea D. Furlan MD PhD PM&R @adfurlan I agree @DanielZBuchman @kren27 |
 | Saima Awan 🇨🇦in🇺🇸 @SaimaTweets RT @ZaynaKhayat: T4. #HCLDR On how to reach the forgotten patients, I take inspiration from the Inner City Health Associates - a group of docs in Toronto created a separate health system for the homeless bottom up - no frills, no bureaucracy https://t.co/pn80UJPXe3 https://t.co/Sx1s4BWlz0 |
| Joe Babaian 🇺🇦 @JoeBabaian @dlschermd @Colin_Hung David, it means so much to hear that. You'll never know. :) #hcldr |
| Enlightening Results 💡 @GraceCordovano @DrKittyMD More here: https://t.co/1847uRUT7R #hcldr |
 | Justin T. Collier MD @JustinCollierMD RT @RasuShrestha: Teamwork makes the dream work. Here's #HCLDR in action. Kudos to the team that's making the magic happen behind @xealthinc and @Babyscripts at @AtriumHealth! #AtriumHealthProud https://t.co/qx4wfAU6wf |
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