#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Empowerment @power4patients
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/ASykeLdQBH
Patient Chat @patientchat
The Empowered #patientchat is a project of @power4patients and @intakeme
Enlightening Results @GraceCordovano
Happy, happy Friday #patientchat! Grace, private cancer patient advocate, joining in from NJ https://t.co/ZMuN1WVlWB
Patient Chat @patientchat
ICYMI: Read about @power4patients new role hosting Empowered #patientchat https://t.co/J2OUBUasbn
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Christina Lizaso @btrfly12
RT @patientchat: Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to emp…
Christina Lizaso @btrfly12
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/ASykeLdQBH
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat. #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/ASykeLdQBH
Patient Chat @patientchat
Today's chat is solely informational & not a substitute for speaking w/ a doctor who's familiar w/your medical needs & history. #patientchat
Alan Brewington @abrewi3010
Alan here. An #arthritis and #Mentalhealth patient from smokey Boise Idaho. #patientchat https://t.co/WOvVNFF1lT
Bob Tufts @TuftsB
#patientchat ' Bob Tufts. Putting teaching work aside to be on as long as I can. @MLIWI
Christina Lizaso @btrfly12
Hi #patientchat - I'm passionate about community engagement and health. You'll find me tweeting #gyncsm #breakthroughcrew #nsgcgenepool
Kimberly Hartmann @fireflyrn84
I'm Kim, RN turned full time patient, #breakthroughcrew ambassador @patientslikeme Team of Advisors 2016-2017 #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/99wmvHL0S2 #patientchat
Enlightening Results @GraceCordovano
@btrfly12 Hi Christina! Great to see you here today. #patientchat
Patient Empowerment @power4patients
Andrea here from PEN. Looking forward to talking about the role of #patientempowerment in prevention/risk management #patientchat
Kimberly Hartmann @fireflyrn84
Also #autonomicdysfunction blogger and #raredisease advocate amongst a few things :) #patientchat
Enlightening Results @GraceCordovano
@fireflyrn84 @patientslikeme Hi Kim! Long time no talk 😊 #patientchat
Patient Chat @patientchat
Today's #patientchat topic is How Does an Empowered Patient Approach Prevention?
Lisa Davis Budzinski @lisadbudzinski
Lisa here from Florida. Pt & advocate. I'm all about the #PatientPerspective #patientchat
Trisha Bundy @bundytr5
RT @patientchat: Welcome to #patientchat - where patients and advocates come to learn from each other and discuss topics of interest to emp…
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Pls include corresponding T# at front of answer - hard to remember but helpful #patientchat
Kimberly Hartmann @fireflyrn84
@GraceCordovano @patientslikeme I know! Feels like it was just a couple hours ago, strange how that happens! ;) #patientchat
Trisha Bundy @bundytr5
RT @patientchat: Today's #patientchat topic is How Does an Empowered Patient Approach Prevention?
Kimberly Hartmann @fireflyrn84
@lisadbudzinski Hi Lisa! #patientchat
Enlightening Results @GraceCordovano
@lisadbudzinski Hi Lisa! How are you managing with Irma prep? #patientchat
Lisa Davis Budzinski @lisadbudzinski
@fireflyrn84 Hi Kim! Always good to see you✨ #Patientchat
Patient Empowerment @power4patients
@lisadbudzinski Glued to weather channel watching #hurricaneirma coverage & praying for family and friends in So FL. Stay safe! #patientchat
Patient Chat @patientchat
Time to start our topics. Revision to T1 based on conversation on Twitter today #patientchat
Mighty Casey Quinlan @MightyCasey
Hey, running in a little late. Casey Quinlan here, #rightcare #s4pm #opendata #openscience activist. #healthliteracy evangelist #patientchat
Patient Chat @patientchat
T1: Is prevention a misnomer? Should focus be on risk reduction? #patientchat
Lisa Davis Budzinski @lisadbudzinski
@GraceCordovano Hi Grace! Slow going #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T1: Is prevention a misnomer? Should focus be on risk reduction? #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
Hi all. I'm Shereese here in Maryland. #patientchat https://t.co/j0Jk8Y4hvO
Patient Empowerment @power4patients
RT @patientchat: T1: Is prevention a misnomer? Should focus be on risk reduction? #patientchat
Nigel H @Crohnoid
Good evening from UK. Nigel - I blog about #IBD #crohns #BAM and getting the best from our #NHS Health Service #patientchat
Open Science @_open_science_
RT @MightyCasey: Hey, running in a little late. Casey Quinlan here, #rightcare #s4pm #opendata #openscience activist. #healthliteracy evang…
ElizabethKelly, Ph.D @Elizabe85727641
Good afternoon everyone, Liz Kelly, relevant 4 both people/#communities, indicates need for both #prevention & #risk study #patientchat
Christina Lizaso @btrfly12
Prevention pretty common language and makes some sense in population health. For N=1 risk reduction almost always more accurate #patientchat
Kimberly Hartmann @fireflyrn84
@power4patients @lisadbudzinski Prayers for all! #Patientchat It's been very interesting from a healthcare standpoint listening to the preparation
Bob Tufts @TuftsB
#patientchat - and one of my pet peeves, we need to get more men involved in these interactions!
Christina Lizaso @btrfly12
With cervical cancer, we actually have the science to prevent almost all of it - about the only time I use the word prevention. #patientchat
Team Intake.Me @Intakeme
RT @patientchat: The Empowered #patientchat is a project of @power4patients and @intakeme
Team Intake.Me @Intakeme
RT @patientchat: T1: Is prevention a misnomer? Should focus be on risk reduction? #patientchat
Enlightening Results @GraceCordovano
@MightyCasey Hi Casey! Happy Friday! #patientchat
Andrew Fisher @merman1974
RT @Crohnoid: Good evening from UK. Nigel - I blog about #IBD #crohns #BAM and getting the best from our #NHS Health Service #patientchat
Nigel H @Crohnoid
T1 Risk reduction is a more realistic way of looking at the issue but prevention makes a much better headline #patientchat
Enlightening Results @GraceCordovano
@lisadbudzinski Stay safe and keep us posted #patientchat
Kimberly Hartmann @fireflyrn84
A1: Prevention is a concept; you can't change your genetics, but risk reduction is something you can work on actively #patientchat
Trista @mommyupgrade
RT @btrfly12: With cervical cancer, we actually have the science to prevent almost all of it - about the only time I use the word preventio…
Alan Brewington @abrewi3010
T1 I think prevention is like perfection, it might be unattainable but is a legit bar to work towards still. #patientchat
Rie Lopez, MPH @RieOfLetters
RT @fireflyrn84: Marking this on the calendar!! #patientchat #breakthroughcrew https://t.co/zMx827s4iX
ShereeseM, MS/MBA @ShereesePubHlth
@btrfly12 Personal prevention, a term not used as much as it should be IMHO, offers this hope #patientchat
Enlightening Results @GraceCordovano
T1: Depends on disease & status. In general, prefer to encourage wellness. Prevention where supported by clinical evidence. #patientchat
Kimberly Hartmann @fireflyrn84
@lisadbudzinski @power4patients So ridiculous! That's another #patientchat by itself! Disaster preparedness for a patient and healthcare system
Bob Tufts @TuftsB
#patientchat - T1 - Sometimes you can't avoid a disease (in my case myeloma), but best to try to be healthy anyway to be able to fight it
ShereeseM, MS/MBA @ShereesePubHlth
T1 Prevention should be personalized if it's to be realized. You can reduce risk by personalizing your approach to prevention #patientchat
Christina Lizaso @btrfly12
@TuftsB always great to see and support male advocates such as u + @abrewi3010 @Rossco006 @martin_lemieux @kreisr1 @gratefull080504 #patientchat
Mighty Casey Quinlan @MightyCasey
T1: I dunno as average humans (aka gen-pop) have enough understanding of what "risk" means to be able to participate? #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up… #patientchat
Mighty Casey Quinlan @MightyCasey
RT @ShereesePubHlth: T1 Prevention should be personalized if it's to be realized. You can reduce risk by personalizing your approach to pre…
Alan Brewington @abrewi3010
RT @btrfly12: @TuftsB always great to see and support male advocates such as u + @abrewi3010 @Rossco006 @martin_lemieux @kreisr1
ElizabethKelly, Ph.D @Elizabe85727641
T1 Prevention not a misnomer =practice/evidence for needed action, risk=result of prevention; relevant 4 health practices dev. #patientchat
Kimberly Hartmann @fireflyrn84
Prevention has a better "ring" to it for media and also patients. From the healthcare standpoint, risk reduction more accurate #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 It probably should be both. There are so many conditions that can be prevented #patientchat https://t.co/NmqdQquiuQ
Patient Chat @patientchat
T2: How do you identify your risks? Does knowing your risks help you make healthier choices? #patientchat
Patient Empowerment @power4patients
RT @patientchat: T2: How do you identify your risks? Does knowing your risks help you make healthier choices? #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T2: How do you identify your risks? Does knowing your risks help you make healthier choices? #patientchat
Ronny Allan @RonnyAllan1
@patientchat a1 recent studies indicate only 40% of cancers are preventable, so perhaps risk reduction is more relevant? #patientchat
Alan Brewington @abrewi3010
@btrfly12 @TuftsB @Rossco006 @martin_lemieux @kreisr1 @gratefull080504 We definitely need more males telling their stories! #patientchat
Christina Lizaso @btrfly12
T2: I finally underwent genetic testing. Now piecing together own plan of action and trying to prioritize nutrition and more. #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat A1: Absolutely a misnomer! #PatientChat #pten
Natalie 🦓 @_Nataliea
Prevention isn't possible w/most stuff you're born with (no matter what the cringe-worthy March of Dimes campaign says...) A1 #patientchat
Anne Polta @annepolta
@MightyCasey I think this will require a complete reframing of how we collectively talk about "prevention". #patientchat
Christina Lizaso @btrfly12
T2: Knowing the mutation puts me at higher risk has spurred me to focus more on health, but even w/ that road map murky #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
RT @fireflyrn84: A1: Prevention is a concept; you can't change your genetics, but risk reduction is something you can work on actively #pat
Mighty Casey Quinlan @MightyCasey
T2: Family history. Lifestyle stuff (smoking, exercise, food, etc). Habits are hard to shift, but knowledge is power. #patientchat
Enlightening Results @GraceCordovano
T2: Family history may offer insights but lightening can strike even the healthiest person.Genetics & environment = unknowns #patientchat
Alan Brewington @abrewi3010
T2 I don't identify my risks 1st. I start with my quality of life then branch out from there. #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T2 Id risk via: environment, diet, exercise, knowledge of family hx, listen to body, yes, knowledge = power to advocate/learn #patientchat
Robyn Stoller @cancerhawk
RT @patientchat: Join #patientchat Fri 9/8 1pmET | 10amPT as we discuss health prevention https://t.co/KzY7hrpRdH https://t.co/uUnbRWMNaE
Kimberly Hartmann @fireflyrn84
A2: Risks ID by dr at times, but we must be aware also. Family hx is so important to know. Once aware then modify to lower risk #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A2: Great benefit to know family history of conditions, etc. if not known, be ACTIVE in your own health management. #patientchat #pten
Mighty Casey Quinlan @MightyCasey
@AnnePolta Yep. And with all the #science denial in the public square, along with fake woo-woo bullsh*t, it's a slog. #patientchat
Patient Empowerment @power4patients
T1 Maybe a little of both. Some illness can be prevented, others not but risk, if IDed early and understood, can be managed #patientchat
Christina Lizaso @btrfly12
RT @GraceCordovano: T1: Depends on disease & status. In general, prefer to encourage wellness. Prevention where supported by clinical evide…
Christina Lizaso @btrfly12
RT @TuftsB: #patientchat - T1 - Sometimes you can't avoid a disease (in my case myeloma), but best to try to be healthy anyway to be able…
Ronny Allan @RonnyAllan1
@patientchat A2 - knowledge of condition vs side effects of treatment can be a jigsaw but aid risk identification, management and mitigation #patientchat
Tatyana Fedotova PhD @tatyanavf
RT @power4patients: T1 Maybe a little of both. Some illness can be prevented, others not but risk, if IDed early and understood, can be man…
Natalie 🦓 @_Nataliea
But at the same time, risk reduction is important in dealing with the genetic hand you're dealt. A1 #patientchat
Ronny Allan @RonnyAllan1
@patientchat a1 - re 40% - sorry I meant #Cancer #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: T2 I don't identify my risks 1st. I start with my quality of life then branch out from there. #patientchat
Kimberly Hartmann @fireflyrn84
We're in the prior authorization stages for genetic and mitochondrial testing for myself to try to ID for plan of care/treat #Patientchat https://t.co/hZo5pQ5U2W
Lisa Davis Budzinski @lisadbudzinski
@TuftsB I so agree. To much stigma that should also be addressed when marketing for prevention & risks #patientchat
Alan Brewington @abrewi3010
T2 when I #ski I know there are risks but I'm after a smile. Life should be the same. #patientchat
Anne Polta @annepolta
T2 Personal medical history can alter your risks. I accumulated additional long-term risk b/c of cancer tx. #patientchat
Bob Tufts @TuftsB
#patientchat - Start w/family backgtound & despite what some MPH's say, get regular checkups for a baseline. Caught my cancer just in time.
Team Intake.Me @Intakeme
RT @abrewi3010: T2 I don't identify my risks 1st. I start with my quality of life then branch out from there. #patientchat
Team Intake.Me @Intakeme
RT @btrfly12: T2: I finally underwent genetic testing. Now piecing together own plan of action and trying to prioritize nutrition and more.…
Christina Lizaso @btrfly12
I think prevention can come along with implication that you didn't do something if you still get sick. Tricky proposition. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T2 It depends on the condition. Obviously we're probably talking about the ones that we're not born with ✨ #Patientchat https://t.co/17bx7h41rW
Christina Lizaso @btrfly12
You can reduce your breast cancer risk, but even if caught early and you do "everything right" you may not prevent mets later. #patientchat
Enlightening Results @GraceCordovano
@fireflyrn84 Grueling part of the process. Wishing you both luck #patientchat
Mighty Casey Quinlan @MightyCasey
+1 MT @btrfly12: I think prevention has implication that you didn't do something if you still get sick. Tricky proposition. #patientchat
Lisa Davis Budzinski @lisadbudzinski
@TuftsB Yes! Baselines are so important in healthcare #patientchat
Liesbeth Moortgat @MoortgatL
Liesbeth #ibd nurse #Belgium #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up… https://t.co/ASykeLdQBH #patientchat
Patient Empowerment @power4patients
T2: 1 of the best ways to become more health literate is to understand your risk https://t.co/QUXhS74pkw @MightyCasey #patientchat
Ronny Allan @RonnyAllan1
A2 - this is a key point for #incurable /chronic - I constantly juggle risks against my quality of life! #patientchat https://t.co/1I660IKGbt
Patient Empowerment @power4patients
RT @btrfly12: I think prevention can come along with implication that you didn't do something if you still get sick. Tricky proposition. #p
Christina Lizaso @btrfly12
@TuftsB @abrewi3010 @Rossco006 @martin_lemieux @kreisr1 @gratefull080504 adding in @Crohnoid as well! :) #patientchat
Patient Chat @patientchat
T3: What are some challenges in getting regular screenings? #patientchat
Martin J @swirlingair
RT @RonnyAllan1: A2 - this is a key point for #incurable /chronic - I constantly juggle risks against my quality of life!…
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T3: What are some challenges in getting regular screenings? #patientchat
Enlightening Results @GraceCordovano
@btrfly12 Yes very true. Some cancers clearly don't care about what preventive & healthy choices you made. #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T3: What are some challenges in getting regular screenings? #patientchat
Alan Brewington @abrewi3010
RT @RonnyAllan1: A2 - this is a key point for #incurable /chronic - I constantly juggle risks against my quality of life!…
Patient Empowerment @power4patients
RT @patientchat: T3: What are some challenges in getting regular screenings? #patientchat
Bob Tufts @TuftsB
#patientchat - T2 I am now in a clinical ttial. Oncologist spent the time with me to outline the program and + and - of it. Helpful.
ShereeseM, MS/MBA @ShereesePubHlth
T3 Access, SDOH, trust #patientchat
Nigel H @Crohnoid
T2 My risks have been identified by various "incidents" but have chosen noyt to take certain meds so I have to watch for signs #patientchat
Alan Brewington @abrewi3010
T3 social stigma. Money. Time. #patientchat
CP Nerve Center @Cpnervecenter
Hi everyone. I'm Becky jumping in late from Washington state #patientchat
Christina Lizaso @btrfly12
#patientchat related reading from @coffeemommy - Prevention vs. Risk Reduction vs. Screening https://t.co/wR2cqSEGDW
Enlightening Results @GraceCordovano
T3: Reimbursement! You may want earlier screening, in light of family history, but it may not be covered. #patientchat
Mighty Casey Quinlan @MightyCasey
T3: ACCESS TO CARE (health coverage). Social determinants. Lack of trust in system. Risk of incidentalomas + wallet biopsies. #patientchat
Rie Lopez, MPH @RieOfLetters
Being a chat bystander today. Amazing information on prevention & patient empowerment. Follow #patientchat.
Patient Empowerment @power4patients
T3: getting screenings paid for, making time to fit regular screenings into already packed schedules, the list goes on...&on... #patientchat
Kimberly Hartmann @fireflyrn84
Quality of life is so important and honestly not acknowledged nearly often enough with #chronic or #incurable conditions. #Patientchat https://t.co/Wfoaw1yVkD
Patient Chat @patientchat
RT @MightyCasey: T3: ACCESS TO CARE (health coverage). Social determinants. Lack of trust in system. Risk of incidentalomas + wallet biopsi…
Bob Tufts @TuftsB
#patientchat - T3 - Will insurance cover the tests? Will.they nickel and dime us?
Patient Empowerment @power4patients
RT @TuftsB: #patientchat - T2 I am now in a clinical ttial. Oncologist spent the time with me to outline the program and + and - of it. He…
Alan Brewington @abrewi3010
T3 health literacy - the value of screening vs idea that screenings just make money for healthcare #patientchat
Enlightening Results @GraceCordovano
T3: Disagreement in scientific reports justifying early screening benefits. Seems there's always a new study refuting the last #patientchat
Ronny Allan @RonnyAllan1
@patientchat T3 - condition guidelines vs specialist knowledge. Patient knowledge of guidelines is often required to force the issue #patientchat
Kimberly Hartmann @fireflyrn84
A3: Honestly for me, I have so many doctor appts already and see my primary monthly, so it feels like annual physical is a joke #patientchat
ElizabethKelly, Ph.D @Elizabe85727641
T3 $$$ to pay for initial testing to support symptoms without signs, MD. support for testing, HC research that limits focus #patientchat
Enlightening Results @GraceCordovano
@TuftsB No. And yes. #patientchat
Mighty Casey Quinlan @MightyCasey
T3: Screening is revenue chase like all US healthcare. I.e. colonoscopy only 1 of 3 CDC guideline screens, but MDs don't tell. #patientchat
Enlightening Results @GraceCordovano
RT @MightyCasey: T3: ACCESS TO CARE (health coverage). Social determinants. Lack of trust in system. Risk of incidentalomas + wallet biopsi…
Lisa Davis Budzinski @lisadbudzinski
@Cpnervecenter Hi partner! I'm here for a bit. Glad we could tag team today✨ #patientchat
Alan Brewington @abrewi3010
T3 if I feel good why should I go to the doc? #patientchat
CP Nerve Center @Cpnervecenter
A3 Getting insurance to pay for it & an MD to order it. If it's not on the list of routine issues it's often huge pain. #patientchat
Christina Lizaso @btrfly12
@TuftsB @abrewi3010 @Rossco006 @martin_lemieux @kreisr1 @gratefull080504 and @RonnyAllan1 - who else? :) #patientchat
Kimberly Hartmann @fireflyrn84
A3.2 I also think that those of us in healthcare are the worst at practicing what we preach to our own patients #patientchat
Natalie 🦓 @_Nataliea
It's super-hard to find primary drs with #raredisease experience to even agree to "screenings" sometimes. A3 #patientchat
Liesbeth Moortgat @MoortgatL
T3: What difference does it makes by knowing or not knowing #patientchat
Mighty Casey Quinlan @MightyCasey
In US, too much screening of those with health coverage, too little of populations without. #sdoh #rightcare #patientchat https://t.co/s5fwAlvp2X
Lisa Davis Budzinski @lisadbudzinski
RT @Cpnervecenter: A3 Getting insurance to pay for it & an MD to order it. If it's not on the list of routine issues it's often huge pain.…
Enlightening Results @GraceCordovano
@MightyCasey Incidentalomas are almost a given & direct roller coaster ride to terror. Scanxiety is real. #patientchat
Christina Lizaso @btrfly12
RT @GraceCordovano: T3: Reimbursement! You may want earlier screening, in light of family history, but it may not be covered. #patientchat
Nigel H @Crohnoid
T3 Depends on who is funding. In UK #NHS it's from GP budget so they may decide to stretch period between regular tests #patientchat
Alan Brewington @abrewi3010
RT @MightyCasey: In US, too much screening of those with health coverage, too little of populations without. #sdoh #rightcare
Mighty Casey Quinlan @MightyCasey
@GraceCordovano I know, I have a #cancer history. But the wallet biopsy stuff is also still too present in US system. #patientchat
Liesbeth Moortgat @MoortgatL
@fireflyrn84 Hahah recognizable. Something I explain to patients and the same thing I'm thinking hear yourself ... #patientchat
Enlightening Results @GraceCordovano
@RonnyAllan1 @patientchat Excellent point. Understanding guidelines is important though can be difficult for many patients. #patientchat
Christina Lizaso @btrfly12
T3 screening guidelines change - the changes in longer pap intervals actually play out to less yearly appointments for some... #patientchat
Bob Tufts @TuftsB
T2 -Fortunate my GP did the extra test. Saw I was exhibiting results closer to a 75 year old. #PATIENTCHAT https://t.co/6qiIDui3cu
Christina Lizaso @btrfly12
RT @abrewi3010: T3 health literacy - the value of screening vs idea that screenings just make money for healthcare #patientchat
Christina Lizaso @btrfly12
RT @GraceCordovano: T3: Disagreement in scientific reports justifying early screening benefits. Seems there's always a new study refuting t…
Mighty Casey Quinlan @MightyCasey
@GraceCordovano IOW, if you have coverage, too much incentive to find something to "treat" you for. #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up…https://t.co/ASykeLdQBH #patientchat
Liesbeth Moortgat @MoortgatL
T3: what's in for the patient #patientchat https://t.co/koz667JmoL
Enlightening Results @GraceCordovano
@MightyCasey It's terrible. So important that you pointed that out. #patientchat
Kimberly Hartmann @fireflyrn84
Also screening guidelines change so frequently. It's hard enough for providers to keep up, let alone a patient! #patientchat
Nigel H @Crohnoid
T3 I now take it upon myself to decide if I need a test then organise mainly through gastro. GP just picks up the tab #patientchat
Christina Lizaso @btrfly12
RT @Cpnervecenter: A3 Getting insurance to pay for it & an MD to order it. If it's not on the list of routine issues it's often huge pain.…
Christina Lizaso @btrfly12
RT @fireflyrn84: A3.2 I also think that those of us in healthcare are the worst at practicing what we preach to our own patients #patientc
Christina Lizaso @btrfly12
RT @_Nataliea: It's super-hard to find primary drs with #raredisease experience to even agree to "screenings" sometimes. A3 #patientchat
Patient Chat @patientchat
T4: Why do you think it often takes a serious illness before people take their health seriously? #patientchat
Ronny Allan @RonnyAllan1
A3 - but I have good specialists so I get the right surveillance. However, I remain very proactive in between #patientchat https://t.co/RWTOYNpr4N
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: Topic 4 (T4:) coming up…https://t.co/ASykeLdQBH #patientchat
Patient Empowerment @power4patients
RT @patientchat: T4: Why do you think it often takes a serious illness before people take their health seriously? #patientchat
Enlightening Results @GraceCordovano
@MightyCasey There's always another test just in case. Does the ruling out and monitoring ever stop? #patientchat
Alan Brewington @abrewi3010
@btrfly12 @TuftsB @Rossco006 @martin_lemieux @kreisr1 @gratefull080504 @RonnyAllan1 @JamieChurch2 @mattfit4lyfe @nickdawson @ProstheticMedic @iam_spartacus are great male advocates. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T4: Why do you think it often takes a serious illness before people take their health seriously? #patientchat
Mighty Casey Quinlan @MightyCasey
T3: Paying attention to the "Glover effect" (use Dartmouth Atlas for that) can also open people's eyes to over/underuse, too #patientchat
Rie Lopez, MPH @RieOfLetters
This! At least a million times over. https://t.co/X4OyhmfXFh
Christina Lizaso @btrfly12
RT @fireflyrn84: Also screening guidelines change so frequently. It's hard enough for providers to keep up, let alone a patient! #patientch
Christina Lizaso @btrfly12
RT @Crohnoid: T3 I now take it upon myself to decide if I need a test then organise mainly through gastro. GP just picks up the tab #patien
Kimberly Hartmann @fireflyrn84
T4: I think a serious illness gives a glimpse of mortality. Until then we are all invincible or so we think! #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T4: Why do you think it often takes a serious illness before people take their health seriously? #patientchat
Mighty Casey Quinlan @MightyCasey
@GraceCordovano <snark font> CYA Medicine - best in the world!! </snark font> #patientchat
Enlightening Results @GraceCordovano
T4: Taking life for granted can be so easy. It's human nature to feel the next moment is promised. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T4 I think life gets in the way. Taking our minds in so many directions in a daily basis. A lot of juggling #patientchat https://t.co/ujZLhuPwu8
ElizabethKelly, Ph.D @Elizabe85727641
T4 Health = blessing, doing the right things, illness = results of not doing/behaving correctly & need to be awakened #patientchat
Kimberly Hartmann @fireflyrn84
Amen to this!! CYA! #Patientchat https://t.co/oGMzYiO7eC
Bob Tufts @TuftsB
#patientchat T4 - we think we are indestructible, that (fill.in the blank) will never happen to us.
ShereeseM, MS/MBA @ShereesePubHlth
@patientchat T4 Heightened awareness. The threat of a serious illness prompts makes QOL negative impact a real possibility for most #patientchat
Liesbeth Moortgat @MoortgatL
T4: all the others but not me #patientchat
Nigel H @Crohnoid
T4 Unless something happens (or you're a hypochondriac) then why would you want something else to worry about. Life's too short #patientchat
Christina Lizaso @btrfly12
T4 I definitely think it is challenging to get people involved w/ healthcare change who only go to doc once/year. #patientchat
Alan Brewington @abrewi3010
T4 quality of life is better eating cookies, #skiing, #hiking, #photographer, creating art, #designthinking #patientchat
Mighty Casey Quinlan @MightyCasey
T4: Stigma of "illness" is #1 in our culture. Sickness is seen as punishment for [something] in Calvinist thinking. #patientchat
Sexy Health Tips @sexyhealthtips
RT @patientchat: T4: Why do you think it often takes a serious illness before people take their health seriously? #patientchat
Liesbeth Moortgat @MoortgatL
T4 the difference between sick and healthy is our goals in life #patientchat
CP Nerve Center @Cpnervecenter
A4 Until u have a crisis of your own or with someone close to you, you're invincible! We feel GREAT until suddenly we don't. #patientchat
Kimberly Hartmann @fireflyrn84
Absolutely spot on! #patientchat https://t.co/x6nk2udOIF
Kimberly Hartmann @fireflyrn84
RT @Cpnervecenter: A4 Until u have a crisis of your own or with someone close to you, you're invincible! We feel GREAT until suddenly we do…
Enlightening Results @GraceCordovano
@MightyCasey Seriously love you casey! #patientchat
Mighty Casey Quinlan @MightyCasey
T4: Also, absent any impetus otherwise, who TF wants to wind up dealing with US medical-industrial complex bill-o-rama? #patientchat
Alan Brewington @abrewi3010
T4 it's bc we treat #healthcare as a commodity instead of a right. #patientchat
Ronny Allan @RonnyAllan1
A4 - guilty as charged. I'm superman don't cha know .... just forgot about the kyrptonite #patientchat https://t.co/zse71Et908 https://t.co/MYu8rL3ts6
Mighty Casey Quinlan @MightyCasey
@GraceCordovano #patientchat https://t.co/VvGM6jtNng
Nigel H @Crohnoid
@MightyCasey Wonder if anyone has ever drawn up a #stigmalist rating different illnesses and complaints? #patientchat
Christina Lizaso @btrfly12
RT @MightyCasey: T4: Stigma of "illness" is #1 in our culture. Sickness is seen as punishment for [something] in Calvinist thinking. #pati
Patient Empowerment @power4patients
T4: It's human nature to take our health for granted & making changes based on our risk isn't easy. #patientchat
Mighty Casey Quinlan @MightyCasey
@Crohnoid WHAT. A. GREAT. IDEA. #patientchat
Christina Lizaso @btrfly12
RT @abrewi3010: T4 it's bc we treat #healthcare as a commodity instead of a right. #patientchat
Bob Tufts @TuftsB
@fireflyrn84 And let's be honest. The healthcare system is awful, even if you like your physician. We avoid it if we can. #patientchat
Christina Lizaso @btrfly12
RT @TuftsB: @fireflyrn84 And let's be honest. The healthcare system is awful, even if you like your physician. We avoid it if we can. #pati
Alan Brewington @abrewi3010
T4 we lose control of our time to #healthcare time. Healthcare time is not conducive to a high #QOL #patientchat
Kimberly Hartmann @fireflyrn84
@TuftsB It is horrible! Who wants to get into something that isn't going to give adequate care if/when you need it? #patientchat
Mighty Casey Quinlan @MightyCasey
T4: Simply trying to make an appt, or deal with an insurance issue, can be a day you'll never get back. Add $$$? #fail #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up…https://t.co/ASykeLdQBH #patientchat
Bob Tufts @TuftsB
#patientchat T4 - due to my trial, I have to see my oncologist once a week. Burdensome early. Now resigned/accepting. Paying it forward.
Christina Lizaso @btrfly12
RT @abrewi3010: T4 we lose control of our time to #healthcare time. Healthcare time is not conducive to a high #QOL #patientchat
Ellynn Szoke @ellynnszoke
RT @myopennotes: Patient advocates: Let us know if you have questions on how to access these passes! #patientsincluded
NJ Rare Diseases @njrarediseases
RT @myopennotes: Patient advocates: Let us know if you have questions on how to access these passes! #patientsincluded
Patient Chat @patientchat
T5: How can we keep this conversation going? #patientchat
Chris Lewis @christheeagle1
RT @GraceCordovano: T4: Taking life for granted can be so easy. It's human nature to feel the next moment is promised. #patientchat
Mighty Casey Quinlan @MightyCasey
Srsly, folks, we gotta go waaaay upstream to really fix this. Like K-12 upstream. #healthliteracy https://t.co/BY4g7tDh0o #patientchat
Kimberly Hartmann @fireflyrn84
It's literally almost a full time job dealing with insurance and dr offices who don't speak to each other. Pay me not them! #patientchat
Patient Empowerment @power4patients
T4: On anti-inflam diet due to fam history of AI diseases. Often wonder if it's worth it but look at my kids & keep on truckin #patientchat
Alan Brewington @abrewi3010
T5 we need to get health literacy and community health into our education system.#patientchat
Patient Empowerment @power4patients
RT @patientchat: T5: How can we keep this conversation going? #patientchat
Kimberly Hartmann @fireflyrn84
T5: Raise awareness, practice what we preach, and identify risks along with modifying what we can. That's what we all can do #patientchat
Christina Lizaso @btrfly12
RT @MightyCasey: Srsly, folks, we gotta go waaaay upstream to really fix this. Like K-12 upstream. #healthliteracy https://t.co/BY4g7tDh0o…
Patient Chat @patientchat
RT @fireflyrn84: T5: Raise awareness, practice what we preach, and identify risks along with modifying what we can. That's what we all can…
Mighty Casey Quinlan @MightyCasey
@Crohnoid I've got one brewing on #data brokers, based on a shit show I had with @AnthemInc + @QuestDX this week. They poked the bear. #patientchat
Bob Tufts @TuftsB
#patientchat T5 - need to make our physicians allies in the process to push back against the forces that make access & choice in care hard
Patient Empowerment @power4patients
RT @MightyCasey: Srsly, folks, we gotta go waaaay upstream to really fix this. Like K-12 upstream. #healthliteracy https://t.co/BY4g7tDh0o…
ElizabethKelly, Ph.D @Elizabe85727641
T5 in US advocate for one-payer HC system, increase health literacy, show cost savings from healthy practices, not just illness #patientchat
Enlightening Results @GraceCordovano
@MightyCasey Teaching my kids to speak for themselves at the dr, ask ?'s, repeat ?'s not answered. Culture changes require teaching next gen #patientchat
Faces of Lung Cancer @lungcancerfaces
Lung Cancer comes to mind... #patientchat #lcsm https://t.co/46YuCI72wZ
Mighty Casey Quinlan @MightyCasey
T5: Ongoing conversations in our communities - where we live, not just disease-related. Join #rightcare https://t.co/1mLidV7Cpq #patientchat
Christina Lizaso @btrfly12
At lot of things still go back to drinking lots of water, balance in diet and walking. Some things w/in our control. Rest... #patientchat
CP Nerve Center @Cpnervecenter
A5 Keep networking with likeminded people(like all these tweeters) who want to change the system & help others in the process #patientchat
Nigel H @Crohnoid
T5 One reason people avoid screening is fear of unknown ie. #colonoscopy. I write about my experiences which are mainly good #patientchat
Alan Brewington @abrewi3010
T5 we need human centered #healthcare discussion in federal & state politics. #patientchat
Patient Empowerment @power4patients
@abrewi3010 This is critically important #patientchat
Enlightening Results @GraceCordovano
@abrewi3010 With a serious dose of #empathy included. #patientchat
Christina Lizaso @btrfly12
T5: We definitely need to keep encouraging people to get engaged in their own health - have to support with tools and systems. #patientchat
Bob Tufts @TuftsB
@btrfly12 If we could only all get together for a drink or two we could solve many issues #patientchat
Enlightening Results @GraceCordovano
@MightyCasey Zip codes often matter more than genetics #patientchat
Christina Lizaso @btrfly12
RT @GraceCordovano: @MightyCasey Zip codes often matter more than genetics #patientchat
Patient Empowerment @power4patients
RT @GraceCordovano: @MightyCasey Zip codes often matter more than genetics #patientchat
Christina Lizaso @btrfly12
RT @fireflyrn84: T5: Raise awareness, practice what we preach, and identify risks along with modifying what we can. That's what we all can…
Christina Lizaso @btrfly12
RT @TuftsB: #patientchat T5 - need to make our physicians allies in the process to push back against the forces that make access & choice i…
Christina Lizaso @btrfly12
RT @Elizabe85727641: T5 in US advocate for one-payer HC system, increase health literacy, show cost savings from healthy practices, not jus…
Dennis Keim @denniskeim
RT @btrfly12: At lot of things still go back to drinking lots of water, balance in diet and walking. Some things w/in our control. Rest...…
Christina Lizaso @btrfly12
RT @MightyCasey: T5: Ongoing conversations in our communities - where we live, not just disease-related. Join #rightcare https://t.co/1mLid…
Christina Lizaso @btrfly12
RT @Cpnervecenter: A5 Keep networking with likeminded people(like all these tweeters) who want to change the system & help others in the pr…
Christina Lizaso @btrfly12
RT @Crohnoid: T5 One reason people avoid screening is fear of unknown ie. #colonoscopy. I write about my experiences which are mainly good…
Kimberly Hartmann @fireflyrn84
RT @Cpnervecenter: A5 Keep networking with likeminded people(like all these tweeters) who want to change the system & help others in the pr…
Mighty Casey Quinlan @MightyCasey
Make that ALWAYS >> RT @GraceCordovano: Zip codes often matter more than genetics #sdoh #rightcare #patientchat
CP Nerve Center @Cpnervecenter
RT @TuftsB: @btrfly12 If we could only all get together for a drink or two we could solve many issues #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Patient Empowerment @power4patients
T5: empowerment is key. Armed with knowledge & support you can focus on what you can prevent and manage the risks you face #patientchat
Patient Empowerment @power4patients
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
burtrosen @burtrosen
better late than never? sorry i missed today, i love #patientchat
Bob Tufts @TuftsB
#patientchat - CT Have a HC game plan. Show up with specific questions on paper that you need answered by your physician.
Patient Empowerment @power4patients
RT @TuftsB: #patientchat - CT Have a HC game plan. Show up with specific questions on paper that you need answered by your physician.
Nigel H @Crohnoid
CT The more we can raise awareness than health is one of the key features that contributes to #QOL and we can manage it..... #patientchat
Kimberly Hartmann @fireflyrn84
CT: Another great chat, as usual! Everyone can always use the gentle reminder for more healthy practices for risk reduction #patientchat
Christina Lizaso @btrfly12
RT @power4patients: T5: empowerment is key. Armed with knowledge & support you can focus on what you can prevent and manage the risks you f…
Mighty Casey Quinlan @MightyCasey
CT: Embedded in this 24/7/365. Helping people figure out how to get what they need, avoid what they don't. Lather/rinse/repeat. #patientchat
Christina Lizaso @btrfly12
RT @TuftsB: #patientchat - CT Have a HC game plan. Show up with specific questions on paper that you need answered by your physician.
Christina Lizaso @btrfly12
RT @Crohnoid: CT The more we can raise awareness than health is one of the key features that contributes to #QOL and we can manage it.....…
Kimberly Hartmann @fireflyrn84
RT @Crohnoid: CT The more we can raise awareness than health is one of the key features that contributes to #QOL and we can manage it.....…
Christina Lizaso @btrfly12
@MightyCasey Thanks so much for your great insights today and for the work you are out there doing everyday! #patientchat
Patient Empowerment @power4patients
CT Some tips for reducing your cancer risk. Some are obvious but all good reminders! https://t.co/3NBw5Cim9Q #patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Christina Lizaso @btrfly12
RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour.
Alan Brewington @abrewi3010
CT keep sharing our story!#patientchat
Kimberly Hartmann @fireflyrn84
I think until someone is ill, it's difficult to truly understand quality of life. That needs to be addressed also. #patientchat
Nigel H @Crohnoid
Until the next #patientchat - goodnight. Very informative, as usual. Thanks for organising
ElizabethKelly, Ph.D @Elizabe85727641
CT Reminded=good health/practices saves lives/$$, need broader practice for HC in US beyond illness & making $$ > people focus #patientchat
Patient Chat @patientchat
Join us for the next Empowered #patientchat on Fri September 22nd at 1pm ET | 10am PT https://t.co/NZTyqEoV2X
Sexy Health Tips @sexyhealthtips
RT @Crohnoid: CT The more we can raise awareness than health is one of the key features that contributes to #QOL and we can manage it.....…
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Enlightening Results @GraceCordovano
CT: thanks for continuing the conversation & inspiration #patientchat. Til next time #PatientAdvocacy
Patient Empowerment @power4patients
Thanks everyone, a useful chat, as always. Stay well! #BeEmpowered #patientchat
CP Nerve Center @Cpnervecenter
CT Great strides come when we get tired of doing things the old way. Together we can change healthcare & help heal one another #patientchat
Christina Lizaso @btrfly12
RT @Cpnervecenter: CT Great strides come when we get tired of doing things the old way. Together we can change healthcare & help heal one…
#patientchat content from Twitter.