#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I'm excited for today's #patientchat
David C. Norris, MD @davidcnorrismd
David, precision-medicine methodologist. Looking forward to this convo! #patientchat
Kevin Freiert @K_SalemOaks
Kevin from CT. Pardon my repeated tweets today. Looking forward to a lively #patientchat today
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
ShereeseM, MS/MBA @ShereesePubHlth
Hi all, Shereese here #patientchat https://t.co/qHvFakZ4OS
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
Vera Rulon FAHIMA @vrulon
Hello All, Vera Rulon here from NY. Looking forward to the #patientchat
Inspire @teaminspire
Hello to all gathered today for #patientchat, John Novack here from Inspire.
Beth Morton @beth_morton
Beth, #chronicmigraine patient/advocate from Vermont. Mostly lurking today. #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
Lisa Davis Budzinski @lisadbudzinski
I’ll be watching and learning from the sidelines today #patientchat
Sanford Jeames; DHA @JeamesSailor
@patientchat Good afternoon everyone. I am a Sanford, a Patient Advocate currently residing in Austin Texas. #patientchat #advocacy
Mary MACK @MaryOCMack
Mary patient and Laminopathies advocate. Intermittently present. #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Precision Medicine Today https://t.co/hVzd9Xp3TE
Patient Chat @patientchat
This chat was inspired by this year’s #ASCO18 theme: Delivering Discoveries: Expanding the Reach of Precision Medicine #patientchat
Christina Lizaso @btrfly12
RT @patientchat: Today's #patientchat topic is Precision Medicine Today https://t.co/hVzd9Xp3TE
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage w/ othe…
Christina Lizaso @btrfly12
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage w/ othe…
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Dolores Richards @joyfulkira
Hi Everyone, I am Dolores Richards, cofounder of @skyddacare registered nurse and patient advocate. Always interested in the Patient POV... #patientchat
Marie Ennis-O'Connor @JBBC
@patientchat Dipping in to #PatientChat today - always such a stimulating chat
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpf…
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Patient Chat @patientchat
T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTarmRigj
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: This chat was inspired by this year’s #ASCO18 theme: Delivering Discoveries: Expanding the Reach of Precision Medicine #pa
Suzie Siegel @SuzieSiegel
RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/hVzd9Xp3TE https://t.co/tAz6i2A1aF
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTa…
Heather McCullen @H_SalemOaks
#patientchat (I wonder if I've just accidentally invited another chat to join us) https://t.co/CiRNICmSt4
Christina Lizaso @btrfly12
RT @patientchat: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTa…
Vera Rulon FAHIMA @vrulon
T1: experience w #prescisionmedicine as #patient - HTN (common condition) - trying to customize treatments, lifestyle w my doc #patientchat
Kevin Freiert @K_SalemOaks
Minimal, although it has been a buzzword in Pharma R&D for 10-15 years. "just for You" is what we called it. #patientchat https://t.co/2WQ9iG3CaA
Suzie Siegel @SuzieSiegel
Hi, I'm a longtime #sarcoma survivor & patient advocate, but I'm new to #patientchat
Inspire @teaminspire
RT @patientchat: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTa…
Sanford Jeames; DHA @JeamesSailor
@patientchat T1. My experience with #PrecisionMedicine has been as a provider, but with minority and underserved population. Many of these groups have little knowledge about this regimen and are not always given this option. #patientchat #disparities #communitypractices
Patient Chat @patientchat
@SuzieSiegel Welcome @SuzieSiegel! Glad you could join in on today's #patientchat
Mary MACK @MaryOCMack
T1. As a patient with a rare disease, I am concerned about being priced out of therapies. Clinical trial phase 3 is starting for cardiolaminopathy #patientchat
Christina Lizaso @btrfly12
T1: As a moderate risk previvor, I still feel in no-mans-land as the science isn't there yet to give me a precise surveillance plan. Hopeful, but #precisionmedicine not doing much for me yet. #patientchat
Vera Rulon FAHIMA @vrulon
@NCPDP I've been incorporating some alternatives as well. It would be important for our doctors to consider what works for individuals (only only generalized data) #patientchat
Geeky Fox @TechKitsune
A1: Oddly enough I may be at the begining of this journey as a patient. I'm actually a really healthy person despite some mental health things. My family has either died or had heart issues. I'm young but my PCP is willing to look #patientchat
PatientOrator @PatientOrator
@patientchat @power4patients Hi Kara! Nice to meet virtually! I’m Kistein from @PatientOrator #patientchat
Kevin Freiert @K_SalemOaks
I wonder if that is true for all populations. Little knowledge...not given the option. Have you seen a difference with the minority and underserved patients? #patientchat https://t.co/IYL7eM9k62
Barby Ingle 📣 @BarbyIngle
T1: I have not had it as good as the official def of "med model that proposes the customization of HC, w med decisions, TXs, practices, or products being tailored 2 individual PT" but I do have providers who r trying 2 move n this direction w concierge practices #patientchat https://t.co/ONoEqCi9aH
David C. Norris, MD @davidcnorrismd
T1. My recent efforts in #PrecisionMedicine have been devoted to expanding the concept beyond mere ‘omics, to include (e.g.) #DoseIndividualization. #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/jfSuBqqDDl #patientchat
Vera Rulon FAHIMA @vrulon
@btrfly12 Agree. And often struggle with what #precisionmedicine would mean in my case #patientchat
Patient Chat @patientchat
T2: What do you think are the biggest challenges in developing personalized therapies? #patientchat https://t.co/VJ4LsUiuv5
Vera Rulon FAHIMA @vrulon
@NCPDP Hypertension (sorry for the acronym... :) ) #patientchat
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: Topic 2 (T2:) coming up...https://t.co/jfSuBqqDDl #patientchat
Patient Chat @patientchat
@PatientOrator @power4patients Hi Kistein! So nice to "meet" you as well! #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T2: What do you think are the biggest challenges in developing personalized therapies? #patientchat https://t.co/VJ4LsUiuv5
Mary MACK @MaryOCMack
T2. Probably the biggest challenge will be enrolling and retaining patients for clinical trials. #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T2: What do you think are the biggest challenges in developing personalized therapies? #patientchat https://t.co/VJ4LsUiuv5
Kevin Freiert @K_SalemOaks
T2 Uncertain business model for pharma. Developing each "precise treatment" will cost as much but may not create an adequate return for investors. #patientchat #precisionmedicine @SalemOaks https://t.co/pazH4RlqQ2
Jeremy Murphy @jeremypmurphy
RT @patientchat: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTa…
Vera Rulon FAHIMA @vrulon
T2: Are many. Here's 1: Ensuring the doctor listens & works towards a customised approach - finding the right doctor for you is step 1 #patientchat
Beth Morton @beth_morton
T1: As a patient, I've had not experience with #precisionmedicine until recently. I've been researching pharmacogenetic testing as a possible way to better treat my condition. #patientchat
Suzie Siegel @SuzieSiegel
T1. I got a great response from conventional chemo. I'm grateful for research that helps doctors figure out the right treatment for the right person. #patientchat
Mary MACK @MaryOCMack
T2. Proving that the molecules work in a precise way for a given disease population. And why they work or don't. #patientchat
Sanford Jeames; DHA @JeamesSailor
@K_SalemOaks T1. The major difference about #PrecisionMedicine has much to do with the location of where treatment is provided. Academic centers are good, but some community & regional cancer centers do not always have experienced oncologists or teams. #patientchat #rural #CBPR #disparities
Christina Lizaso @btrfly12
T2: Amazing data is out there but systems don't talk and so many errors in everyone's varied records. And no one person really has all their records together except in their own work-arounds. #patientchat
Christina Lizaso @btrfly12
RT @MaryOCMack: T2. Probably the biggest challenge will be enrolling and retaining patients for clinical trials. #patientchat
Heather McCullen @H_SalemOaks
@K_SalemOaks @SalemOaks T2, and what the will mean for the cost to consumers. #patientchat
Christina Lizaso @btrfly12
RT @K_SalemOaks: T2 Uncertain business model for pharma. Developing each "precise treatment" will cost as much but may not create an adequ…
Geeky Fox @TechKitsune
A2: Cost, clinical trials that patients may be unwilling to take, fear of the unknown, providers lack of faith in how it can help. Etc. #patientchat
Barby Ingle 📣 @BarbyIngle
T2. The biggest challenge to #PrecisionMedicine that I see is lack of reimbursement for the mngt of the care, so providers are not good at it because it doesn't make them a living Although it would make for better care its not valued w insurance & other payers #patientchat https://t.co/5h9haJcX6g
Inspire @teaminspire
RT @patientchat: T2: What do you think are the biggest challenges in developing personalized therapies? #patientchat https://t.co/VJ4LsUiuv5
Christina Lizaso @btrfly12
RT @JeamesSailor: @K_SalemOaks T1. The major difference about #PrecisionMedicine has much to do with the location of where treatment is pro…
Vera Rulon FAHIMA @vrulon
T2: Here's another challenge (2): #patients literacy and trust to share information w their doctor - communication on both sides is key #patientchat
Christina Lizaso @btrfly12
RT @H_SalemOaks: @K_SalemOaks @SalemOaks T2, and what the will mean for the cost to consumers. #patientchat
Kevin Freiert @K_SalemOaks
T2 Pricing and payment. If treatment is 100% guaranteed, is it worth more to you? Your insurance? If it doesn't work for you, should you get your money back? From whom? #patientchat #precisionmedicine @SalemOaks @H_SalemOaks @JamieRoger8
Christina Lizaso @btrfly12
@TechKitsune Not even all cancer providers are on board with tumor testing yet - in the cancers where we know that tumor testing can guide tx decisions. #patientchat
David C. Norris, MD @davidcnorrismd
T2. I fear the field of #Biostatistics itself is holding back progress in #PrecisionMedicine. (cc @f2harrell @stephensenn) See this, for example: https://t.co/fecWQfUCYB #patientchat
Christina Lizaso @btrfly12
RT @vrulon: T2: Here's another challenge (2): #patients literacy and trust to share information w their doctor - communication on both side…
ShereeseM, MS/MBA @ShereesePubHlth
T2 Systems that aren't designed for that purpose. Having the large data sets we're seeing requires comprehensive strategies that ensure personalized therapies are properly realized #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/jfSuBqqDDl #patientchat
Sanford Jeames; DHA @JeamesSailor
RT @ShereesePubHlth: T2 Systems that aren't designed for that purpose. Having the large data sets we're seeing requires comprehensive stra…
Patient Chat @patientchat
T3: Should healthy people have their genome sequenced? Is it too much a burden to have all of that information? #patientchat https://t.co/sy7XTegdt7
Kevin Freiert @K_SalemOaks
T2 On the positive sign, the advance with Immuno-oncology for specific genetic profiles has been encouraging. #patientchat
Christina Lizaso @btrfly12
RT @ShereesePubHlth: T2 Systems that aren't designed for that purpose. Having the large data sets we're seeing requires comprehensive stra…
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T3: Should healthy people have their genome sequenced? Is it too much a burden to have all of that information? #patientch
Christina Lizaso @btrfly12
RT @patientchat: T3: Should healthy people have their genome sequenced? Is it too much a burden to have all of that information? #patientch
studio22media @studio22media
#runningANDgunning 📹📽🎥 #MusicVideo https://t.co/1VJK3D9g1S 🔫🎶🔰🔪🍞🦋🎶🍮🍽 #gbb2 #₲ßß₂ #Gββ² #GBB2 🌖🌌🚀💥🔫🏃🏾‍♂️🛸🌌🌒 #AddDadToASong #HITsm #OMCchat #AMC2018 #patientchat #smemchat #IRE2018 #MyRoadTripHorrorStory #FreeMovieFriday #FunFactFriday #matterdemoday
Kevin Freiert @K_SalemOaks
T3 Simple answer yes, sequencing should be available to everyone. The question about burden is more complex. 1) people need to understand the data. 2)they need to deal with what the data say. 3) they need to make choices about whom to reveal the data #patientchat https://t.co/jK2LMYsgHW
blackbutterfly @BBFrecords
#runningANDgunning 📹📽🎥 #MusicVideo https://t.co/j88a1h529E 🔫🎶🔰🔪🍞🦋🎶🍮🍽 #gbb2 #₲ßß₂ #Gββ² #GBB2 🌖🌌🚀💥🔫🏃🏾‍♂️🛸🌌🌒 #AddDadToASong #HITsm #OMCchat #AMC2018 #patientchat #smemchat #IRE2018 #MyRoadTripHorrorStory #FreeMovieFriday #FunFactFriday #matterdemoday
Mary MACK @MaryOCMack
T2 Greed is a barrier to honesty in clinical trials. Can't just report the positive results. Big concern #patientchat
Vera Rulon FAHIMA @vrulon
@K_SalemOaks @SalemOaks @H_SalemOaks @JamieRoger8 Great point. Big challenge for me personally in finding the right med that works w/little no side effects. #patientchat #precisionmedicine Trial & error can be tough.
Anish Koka @anish_koka
RT @davidcnorrismd: T2. I fear the field of #Biostatistics itself is holding back progress in #PrecisionMedicine. (cc @f2harrell @stephense
Sanford Jeames; DHA @JeamesSailor
@patientchat T2. I would think the biggest challenge in developing personalized therapy would be a more comprehensive consideration of patient background. Too many times, there is not consideration of #SDoH as it relates to effective therapy. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T3 #GenomeSequencing can uncover anomalies useful to the individuals and researchers. That said, data can cumbersome. There has to be an aggregation strategy #patientchat https://t.co/pdOuKivNVc
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: T3: Should healthy people have their genome sequenced? Is it too much a burden to have all of that information? #patientch
Vera Rulon FAHIMA @vrulon
T3: Genome sequencing is a personal choice. Some healthy people may wish to do preventative measures based on results. Some not. #patientchat
Barby Ingle 📣 @BarbyIngle
T3: I feel that every human should have genome sequencing to get better TX, options, meds, life ... Having had genetic testing myself, it can be a burden bc its not a norm & I was overwhelmed, looking back over the past 18 or so months I am glad to have the info now #patientchat https://t.co/FkVt68UuRB
Suzie Siegel @SuzieSiegel
@K_SalemOaks @SalemOaks T2. Ultimately, precision medicine may make every disease rare, according to @realrickpazdur. I wrote about this for #sarcoma: https://t.co/sRS5kxFsNR #patientchat
Patient Chat @patientchat
RT @K_SalemOaks: T3 Simple answer yes, sequencing should be available to everyone. The question about burden is more complex. 1) people…
Christina Lizaso @btrfly12
T3: There is a real shortage looming of genetic counselors/those trained to help ppl interpret results. Results without education and guidance is irresponsible in my view. Individuals are making decisions and getting tx w/out knowledgable hc input #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T3: Should healthy people have their genome sequenced? Is it too much a burden to have all of that information? #patientch
ShereeseM, MS/MBA @ShereesePubHlth
RT @btrfly12: T3: There is a real shortage looming of genetic counselors/those trained to help ppl interpret results. Results without educa…
Christina Lizaso @btrfly12
RT @ShereesePubHlth: T3 #GenomeSequencing can uncover anomalies useful to the individuals and researchers. That said, data can cumbersome.…
Mary MACK @MaryOCMack
T3. If I were healthy, I would not have it sequenced, but everyone should have it available to them. #patientchat
Christina Lizaso @btrfly12
RT @JeamesSailor: @patientchat T2. I would think the biggest challenge in developing personalized therapy would be a more comprehensive con…
Dolores Richards @joyfulkira
Good advice @vrulon when advocating for patients step # 1 finding the right doctor open to a customized approach. TY #patientchat https://t.co/Qut6GwwyfY
Sanford Jeames; DHA @JeamesSailor
@patientchat T3. Genome testing has been vital to learning more about patient history and health information. Truly vital. However, it would appear to me there are other factors that also contribute to impacting therapy. What about #stress? #SDoH? How significant is multi-racial? #patientchat
Lymphomation.org @Lymphomation
#patientchat Caregiver and 22 year advocate for patients with lymphoma. Perspective on #PrecisionMedicine: it's science-based but not necessarily as good as as it sounds. Big variation in efficacy by drug and indication. Like any treatment there are off-target effects.
Geeky Fox @TechKitsune
T3: People are interested in genes, it's become quite the trend. It would be good to ask those who are healthy and see what they say. People might be interested in their own results as well as how it can help. #patientchat
Christina Lizaso @btrfly12
RT @K_SalemOaks: T3 Simple answer yes, sequencing should be available to everyone. The question about burden is more complex. 1) people…
Sanford Jeames; DHA @JeamesSailor
RT @K_SalemOaks: T3 Simple answer yes, sequencing should be available to everyone. The question about burden is more complex. 1) people…
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/jfSuBqqDDl #patientchat
Inspire @teaminspire
RT @btrfly12: T3: There is a real shortage looming of genetic counselors/those trained to help ppl interpret results. Results without educa…
Vera Rulon FAHIMA @vrulon
@btrfly12 Well put. Education & guidance is important - how communicated is as well #patientchat
Christina Lizaso @btrfly12
RT @Lymphomation: #patientchat Caregiver and 22 year advocate for patients with lymphoma. Perspective on #PrecisionMedicine: it's science-…
Inspire @teaminspire
RT @SuzieSiegel: @K_SalemOaks @SalemOaks T2. Ultimately, precision medicine may make every disease rare, according to @realrickpazdur. I wr…
Patient Chat @patientchat
T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GOkGiGjnf
Christina Lizaso @btrfly12
RT @joyfulkira: Good advice @vrulon when advocating for patients step # 1 finding the right doctor open to a customized approach. TY #patie
Jeremy Murphy @jeremypmurphy
RT @patientchat: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GO…
Patient Chat @patientchat
RT @btrfly12: T3: There is a real shortage looming of genetic counselors/those trained to help ppl interpret results. Results without educa…
Christina Lizaso @btrfly12
RT @vrulon: T3: Genome sequencing is a personal choice. Some healthy people may wish to do preventative measures based on results. Some not…
David C. Norris, MD @davidcnorrismd
@MaryOCMack T3. I feel the same way. Completely unremarkable family history of disease. But if I were ever (e.g.) admitted to an ICU, I’d get sequenced right away, if only for the #pharmacogenomics. #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GO…
Inspire @teaminspire
@BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat
Suzie Siegel @SuzieSiegel
T3. At this time, I can't imagine every healthy person would want their genome sequenced. It was hard enough for me to get 2 relatives to spit in a tube for @23andMe even though I was paying. #patientchat
Vera Rulon FAHIMA @vrulon
@joyfulkira Yes!! This has often been a challenge for me but think in a good place now. The other concern I have is #patients doing their part. #patientchat
Kevin Freiert @K_SalemOaks
Hmmm.. Define healthy. Many people without symptoms or other telltale signs may be fearful of finding out they are "doomed" to get something later. For me, I think I'd rather be forewarned...I think. #patientchat https://t.co/h0Ljt5XMMP
Patient Chat @patientchat
RT @teaminspire: @BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat
Christina Lizaso @btrfly12
RT @teaminspire: @BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat
Barby Ingle 📣 @BarbyIngle
T4. I think intime it will, we still have a ways 2 go 2 train payers & pros as to why precision med is so important & that not everyone w the same disease is going 2 respond 2 the same TX & that individualized care is going 2 save money for everyone in the long run #patientchat https://t.co/RaQJNccDsp
Sanford Jeames; DHA @JeamesSailor
RT @btrfly12: T3: There is a real shortage looming of genetic counselors/those trained to help ppl interpret results. Results without educa…
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GO…
Kevin Freiert @K_SalemOaks
RT @teaminspire: @BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat
Christina Lizaso @btrfly12
RT @K_SalemOaks: Hmmm.. Define healthy. Many people without symptoms or other telltale signs may be fearful of finding out they are "doome…
Suzie Siegel @SuzieSiegel
T3. OTOH, in the #sarcoma world, I'd love to see all patients get genomic testing. It may help some of them & it will definitely help research. #patientchat
Barby Ingle 📣 @BarbyIngle
RT @teaminspire: @BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat
Sanford Jeames; DHA @JeamesSailor
@patientchat T4. I do not believe the #PrecisionMedicine has truly altered clinical practice at this point. There are not enough genetic counselors available to help patients decipher info gained. I truly feel the location of where a patient goes impacts provider delivery. #patientchat
Mary MACK @MaryOCMack
T4: Yes, I think genetic testing is promoted often appropriately, but not always. #patientchat
Heather McCullen @H_SalemOaks
@K_SalemOaks I'm not sure I'd want to know. On one hand it would be easier to know what you're looking for if symptoms did appear. On the other hand it might just create unnecessary anxiety. #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/jfSuBqqDDl #patientchat
Patient Chat @patientchat
T5: Precision medicines are costly. How can we influence insurers so more patients can benefit? #patientchat https://t.co/9HkXsTnDFQ
Christina Lizaso @btrfly12
T3: how getting your genome sequenced will affect your health and life INS is something that will play out over time and isn't settled even with the laws we have now. A big consideration when it comes to what you want to know when. #patientchat
Inspire @teaminspire
RT @patientchat: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GO…
Christina Lizaso @btrfly12
RT @SuzieSiegel: T3. OTOH, in the #sarcoma world, I'd love to see all patients get genomic testing. It may help some of them & it will defi…
Christina Lizaso @btrfly12
RT @JeamesSailor: @patientchat T4. I do not believe the #PrecisionMedicine has truly altered clinical practice at this point. There are not…
Sanford Jeames; DHA @JeamesSailor
@btrfly12 @patientchat T3. Well said here. I truly feel this is a huge area that can impact many patients. However, the lack of knowledge about what results mean could be detrimental for some patients. #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T5: Precision medicines are costly. How can we influence insurers so more patients can benefit? #patientchat https://t.co/…
Angela Davis @DavisAngesdavis
RT @K_SalemOaks: T3 Simple answer yes, sequencing should be available to everyone. The question about burden is more complex. 1) people…
Jaye @HealthCoachJaye
RT @SuzieSiegel: T3. OTOH, in the #sarcoma world, I'd love to see all patients get genomic testing. It may help some of them & it will defi…
Anthony Leon @anthonynotleon
@K_SalemOaks Last year I asked my PCP if she worked with any genomics labs and her thoughts. Her words to me (and she shares with others), "how will it help you? You are susceptible to x type of cancer, what can you do about it?". I get her thought process but disagree #patientchat
Sanford Jeames; DHA @JeamesSailor
RT @patientchat: T5: Precision medicines are costly. How can we influence insurers so more patients can benefit? #patientchat https://t.co/…
Suzie Siegel @SuzieSiegel
T5. I assume insurance companies will need to see evidence that genomic testing might help a particular patient. #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T5: Precision medicines are costly. How can we influence insurers so more patients can benefit? #patientchat https://t.co/…
Dolores Richards @joyfulkira
@K_SalemOaks Sounds like the benefits to the patient outweigh the burden...Is that correct? #patientchat https://t.co/iCUI6OHpLc
Barby Ingle 📣 @BarbyIngle
T5. We have to show payers the cost benefit of individualized care and that precision care can lower overall costs for each patient. Because we haven't been doing it fully the startup will be pricey comparing, but after its norm it will cost less per patient overall #patientchat https://t.co/FTO0kaLBbg
Kevin Freiert @K_SalemOaks
As a fellow #sarcoma survivor, I agree. When I was diagnosed it was basically "one of your cells went crazy." I have a degree in molecular genetics - I wish they had a better explanation. #patientchat https://t.co/QkQEWQWKzL https://t.co/XsQyrjC2Hb
ShereeseM, MS/MBA @ShereesePubHlth
T4 If it hasn't they're doing it all wrong. #PrecisionMedicine should increase communication, clarify HPIs, and determine #epidemiology (if appropriate) #patientchat https://t.co/iMpkeMZPPD
Vera Rulon FAHIMA @vrulon
T5: Great question. Value & outcomes are key. Is that enough to convince? One would think that MCR (Medical Cost Ratio) would improve if the right med is given to the right pt VS the trial & error approach #patientchat
Sanford Jeames; DHA @JeamesSailor
@patientchat T5. The costs of #PrecisionMedicine impacts so many patients, particularly under-insured and under-represented. I do not feel we are at the point where this can be expanded. Our current system of healthcare creates gaps. #patientchat
Dolores Richards @joyfulkira
@btrfly12 Good point! #patientchat https://t.co/WsqRABR0CH
David C. Norris, MD @davidcnorrismd
@SuzieSiegel T5. Alternatively, payment (for the drugs, at least) might be tied to #ex_post outcomes. No need to predict, that way. Prediction difficult. #patientchat
Suzie Siegel @SuzieSiegel
I hope it's OK to post articles we've written. Here's what I have on genomic profiling, in case someone finds it useful: https://t.co/lRy3U00LwW #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @SuzieSiegel: I hope it's OK to post articles we've written. Here's what I have on genomic profiling, in case someone finds it useful: h…
ShereeseM, MS/MBA @ShereesePubHlth
RT @davidcnorrismd: @SuzieSiegel T5. Alternatively, payment (for the drugs, at least) might be tied to #ex_post outcomes. No need to predic…
Christina Lizaso @btrfly12
RT @anthonynotleon: @K_SalemOaks Last year I asked my PCP if she worked with any genomics labs and her thoughts. Her words to me (and she s…
Vera Rulon FAHIMA @vrulon
RT @davidcnorrismd: @SuzieSiegel T5. Alternatively, payment (for the drugs, at least) might be tied to #ex_post outcomes. No need to predic…
Christina Lizaso @btrfly12
RT @BarbyIngle: T5. We have to show payers the cost benefit of individualized care and that precision care can lower overall costs for each…
Christina Lizaso @btrfly12
RT @K_SalemOaks: As a fellow #sarcoma survivor, I agree. When I was diagnosed it was basically "one of your cells went crazy." I have a d…
Christina Lizaso @btrfly12
RT @JeamesSailor: @patientchat T5. The costs of #PrecisionMedicine impacts so many patients, particularly under-insured and under-represent…
Patient Chat @patientchat
Topic 6 (T6:) coming up...https://t.co/jfSuBqqDDl #patientchat
Kevin Freiert @K_SalemOaks
T5 Patients talking to medicine researchers and developers. Clinical trials that provide the evidence insurers are looking for would be very influential. #drugdevelopment is becoming about more than approval. #patientchat #precisionmedicine
Mary MACK @MaryOCMack
T5: Precision medicines are priced way to high imo. Also, early research is often federally funded. About insurance? I don't know. Insurers say they need data, well they deny PCSK9 inhibitors all the time and they work great. #patientchat
Patient Chat @patientchat
T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH
Angela Hemans @AngelaHemans
RT @patientchat: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH
Sanford Jeames; DHA @JeamesSailor
@vrulon T5: I think a key component to this has to be the relationship between patient & provider. We all recognize this is not always good for many reasons. Much discussion at #ASCO18 about lack of use of #SoMed to bridge gaps w/ patients & providers. #patientchat #disparities
Christina Lizaso @btrfly12
Patient registries are going to be an important piece in all of this. I haven't seen many become truly transformational yet. The gov's 100million cohort study is such an effort on a grand scale. #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH
Sanford Jeames; DHA @JeamesSailor
RT @btrfly12: Patient registries are going to be an important piece in all of this. I haven't seen many become truly transformational yet.…
Jeremy Murphy @jeremypmurphy
RT @patientchat: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH
Christina Lizaso @btrfly12
RT @JeamesSailor: @vrulon T5: I think a key component to this has to be the relationship between patient & provider. We all recognize this…
Kevin Freiert @K_SalemOaks
While basic (biochemical, in vitro and animal models) are funded federally, almost all clinical trials are funded by industry. Your point holds - the trials need to generate data that actuaries will trust. #patientchat @PCORI https://t.co/wVTXzVRu18
Inspire @teaminspire
RT @patientchat: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH
Vera Rulon FAHIMA @vrulon
T6: Future of #precisionmedicine must include the patient as a member of the team. Also change in culture where all players are amenable to customizing treatment/care VS "one size fits all" approach #patientchat
Sergey Minaev @sminaev2015
RT @patientchat: Join/Share: "Precision Medicine Today" Empowered #patientchat Fri 6/15 1pmET #epatient #ptexp #s4pm #hcsm #hcsmca #hcldr #…
Mary MACK @MaryOCMack
T6: imo, the near future is that precision medicines will become available, but accessible for only those with enough money. #patientchat
Suzie Siegel @SuzieSiegel
@davidcnorrismd Thanks, that's a much better way of putting it. Thus, an insurer might want to see that targeted treatments have helped some people with X disease before paying for a test & then, if applicable to the patient, for treatment. #patientchat
Anthony Leon @anthonynotleon
@patientchat T3 - I'm interested in doing it, learning more and adding to growing data but has anyone found labs/companies they trust? The consumer models make me hesitant because of the open ended sharing of information. #patientchat
Vera Rulon FAHIMA @vrulon
@JeamesSailor So agree. With regards to #disparities there is a well founded lack of #trust of the #healthcare system out there #patientchat
Barby Ingle 📣 @BarbyIngle
T6: I see care n our future (esp. 4 chronic PTs) becoming more & more precision med. We need it 2 be & we have tools 2 get precision care, it will cost the PT outofpocket more the next 10-12 years during the transition but it will lead 2 better & timely care 4 all #patientchat https://t.co/duLk5rlS1k
Patient Chat @patientchat
Topic 7 (T7:) coming up...https://t.co/jfSuBqqDDl #patientchat
Kevin Freiert @K_SalemOaks
T6 Precision medicine could be capstone for #patientpartnership Individual teams organized around (and by) each patient. #patientchat
Christina Lizaso @btrfly12
RT @vrulon: T6: Future of #precisionmedicine must include the patient as a member of the team. Also change in culture where all players are…
Christina Lizaso @btrfly12
RT @BarbyIngle: T6: I see care n our future (esp. 4 chronic PTs) becoming more & more precision med. We need it 2 be & we have tools 2 get…
Christina Lizaso @btrfly12
RT @K_SalemOaks: T6 Precision medicine could be capstone for #patientpartnership Individual teams organized around (and by) each patient…
Suzie Siegel @SuzieSiegel
@MaryOCMack I agree it's a problem. But some will have enough insurance, and others may get the drugs for free or greatly discounted through compassionate use/expanded access programs. #patientchat
David C. Norris, MD @davidcnorrismd
@MaryOCMack T6. Yet long-term, this could end up working like mobile phones. I remember when these were laughable extravagances in center consoles of luxury cars. Now, cell phones are more important to the well-being of people in the developing world than in the developed world. #patientchat
Patient Chat @patientchat
T7: What role do empowered patients play in the #PrecisionMedicine evolution/revolution? #patientchat https://t.co/4aBnlgcFHo
Paul C. McLean @paulcmclean
T3: Can your own doctor explain it to you? If not, how is it useful? #patientchat https://t.co/kSZFukBlqj
Dolores Richards @joyfulkira
@ShereesePubHlth Sounds like a great program! #empoweredpatients #advocacy #patientchat https://t.co/0hs31mTo6r
Christina Lizaso @btrfly12
RT @patientchat: T7: What role do empowered patients play in the #PrecisionMedicine evolution/revolution? #patientchat https://t.co/4aBnlgc…
Christina Lizaso @btrfly12
RT @paulcmclean: T3: Can your own doctor explain it to you? If not, how is it useful? #patientchat https://t.co/kSZFukBlqj
Vera Rulon FAHIMA @vrulon
T7: Empowered #patients are the catalyst for #precisionmedicine as key members of the care team, able to do their own research, collaborate to find the right tx @ePatientDave can tell you #patientchat
Kevin Freiert @K_SalemOaks
T7 #precisionmedicine is an area that is new enough that patients can play a big role in shaping it. The challenges are knowing when to get involved, asking the right questions, and clearly articulating the patient perspective. #patientchat @SalemOaks https://t.co/7nIvzGDy20
Inspire @teaminspire
RT @patientchat: T7: What role do empowered patients play in the #PrecisionMedicine evolution/revolution? #patientchat https://t.co/4aBnlgc…
Barby Ingle 📣 @BarbyIngle
T7. As an empowered chronic patient I play a role in my care and the more I learn, the more I (& other advocates) teach other PTs the tools needed to navigate the minefield of the health system the better precision medicine we all will be for all of us going forward. #patientchat https://t.co/Km63ePjklp
Patient Chat @patientchat
RT @vrulon: T7: Empowered #patients are the catalyst for #precisionmedicine as key members of the care team, able to do their own research,…
Christina Lizaso @btrfly12
RT @K_SalemOaks: T7 #precisionmedicine is an area that is new enough that patients can play a big role in shaping it. The challenges are k…
Patient Chat @patientchat
RT @BarbyIngle: T7. As an empowered chronic patient I play a role in my care and the more I learn, the more I (& other advocates) teach oth…
Kevin Freiert @K_SalemOaks
Empowering patients to shape the future of medicine (TM). Where have I heard that before? @SalemOaks https://t.co/P35nzPUu76 #patientchat https://t.co/HAX2DZMEGL
David C. Norris, MD @davidcnorrismd
T7. I increasingly believe that knowledgeable, engaged patients and patient advocates are THE critical factor for overcoming the many inertial forces holding back #PrecisionMedicine. This is certainly true in regard to #DoseIndividualization. #patientchat
Inspire @teaminspire
RT @davidcnorrismd: T7. I increasingly believe that knowledgeable, engaged patients and patient advocates are THE critical factor for overc…
Suzie Siegel @SuzieSiegel
T7. Hearing a survivor like @stefaniejoho makes me understand and remember information much better than reading an abstract. #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
Christina Lizaso @btrfly12
T7: It's our data that is going to make or break #precisionmedicine so let's hope (and demand) we are involved in all aspects :) #patientchat
Mary MACK @MaryOCMack
T7: Empowered patients have insights that clinical trialists may not have. Share your ideas. #patientchat
David C. Norris, MD @davidcnorrismd
RT @MaryOCMack: T7: Empowered patients have insights that clinical trialists may not have. Share your ideas. #patientchat
Patient Chat @patientchat
RT @btrfly12: T7: It's our data that is going to make or break #precisionmedicine so let's hope (and demand) we are involved in all aspects…
Christina Lizaso @btrfly12
RT @MaryOCMack: T7: Empowered patients have insights that clinical trialists may not have. Share your ideas. #patientchat
Vera Rulon FAHIMA @vrulon
@btrfly12 love this comment... #patientchat
Kevin Freiert @K_SalemOaks
CT: I am glad you decided to do Precision Medicine Take Two. Much better discussion when the technology is working. Thanks #patientchat https://t.co/gEYlyXuMT5
Heather McCullen @H_SalemOaks
RT @K_SalemOaks: CT: I am glad you decided to do Precision Medicine Take Two. Much better discussion when the technology is working. Than…
Barby Ingle 📣 @BarbyIngle
CT: as a PT we too have responsibility for our healthcare needs. Dont just rely on pros to give you all the info, research medical info & yourself to know what works for you, keep good records and be able to explain your health effectively to get the best care #patientchat https://t.co/YTwXLGmydH
Heather McCullen @H_SalemOaks
RT @BarbyIngle: CT: as a PT we too have responsibility for our healthcare needs. Dont just rely on pros to give you all the info, research…
Patient Chat @patientchat
@K_SalemOaks Thank you for being apart of both chats! :) #patientchat
Linda @wordfinga
RT @patientchat: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH
Vera Rulon FAHIMA @vrulon
CT: #ParticipatoryMedicine is key. A collaboration between #patient #provider. Change in #culture so that all players are driving towards what's best for the #individual & #greatergood #patientchat
Christina Lizaso @btrfly12
Whatever you are researching, there is a group of patients who WANT to get involved. Come find us. #patientchat #precisionmedicine
David C. Norris, MD @davidcnorrismd
RT @btrfly12: Whatever you are researching, there is a group of patients who WANT to get involved. Come find us. #patientchat #precisionmed
ShereeseM, MS/MBA @ShereesePubHlth
RT @btrfly12: Whatever you are researching, there is a group of patients who WANT to get involved. Come find us. #patientchat #precisionmed
Laura Williams @williamslaura
RT @btrfly12: Whatever you are researching, there is a group of patients who WANT to get involved. Come find us. #patientchat #precisionmed
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat! We'll tweet out the transcript about 15 minutes past the hour.
Kevin Freiert @K_SalemOaks
Absolutely! Sometimes the clinical trialists (I was one) get lost in the statistics, designs, and regulatory customers. A patient voice in those discussions would keep them focused on the right things. Caution: patients need to ask for the do-able #patientchat https://t.co/yOp077u95E
David C. Norris, MD @davidcnorrismd
RT @K_SalemOaks: Absolutely! Sometimes the clinical trialists (I was one) get lost in the statistics, designs, and regulatory customers.…
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, July 13th https://t.co/kptqRInfUC Hope to see you there!
Mary MACK @MaryOCMack
CT: imo, pharmaceutical companies need to get a grip on astronomical pricing. Don't price tax payers who funded basic early research. Greed is a problem and these are people's lives. #patientchat
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Atif Ahmad @AtifAhm20343865
Marruecos #OCCnoColor Oscar Robertson Suarez #patientchat https://t.co/4XVMh7wloR
David C. Norris, MD @davidcnorrismd
@K_SalemOaks … apropos of which: https://t.co/VfLGr7Q8x3 #patientchat
Christina Lizaso @btrfly12
RT @K_SalemOaks: Absolutely! Sometimes the clinical trialists (I was one) get lost in the statistics, designs, and regulatory customers.…
Christina Lizaso @btrfly12
RT @davidcnorrismd: @K_SalemOaks … apropos of which: https://t.co/VfLGr7Q8x3 #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T7: What role do empowered patients play in the #PrecisionMedicine evolution/revolution? #patientchat https://t.co/4aBnlgc…
Mary MACK @MaryOCMack
CT: imo, pharmaceutical companies need to get a grip on astronomical pricing. Don't price tax payers out. Greed is a problem. #patientchat
Dolores Richards @joyfulkira
@patientchat Bye, join us next time! #patientchat. I learned so much about benefits of "Precision Medicine" #empoweringpatients and barriers to access. Hope for the future! Always a great time!! Thank you!
Mind Cipher @ZyrxMind
#patientchat Honey Smacks #FridayFeeling #PORESP #MARIRN #EidMubarak https://t.co/cfg7unBq8m
Dolores Richards @joyfulkira
@AARPBlackCom @CrystalJonesDMH @CMSANational Join us July 13th next #patientchat #empowerpatients https://t.co/EgjnT0sfyw
PublicHealthMaps @PublicHealthMap
RT @ShereesePubHlth: T4 If it hasn't they're doing it all wrong. #PrecisionMedicine should increase communication, clarify HPIs, and determ…
#patientchat content from Twitter.