#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
– ().
See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | 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 moved to Mastodon 🦣 @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, FASCO(He, Him) @JeamesSailor RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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 @InspireIsHealth 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 |
 | Lisa Davis Budzinski @lisadbudzinski I’ll be watching and learning from the sidelines today #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @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, FASCO(He, Him) @JeamesSailor RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage w/ others on the topic. |
| 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/ others on the topic. |
| 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 |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #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, FASCO(He, Him) @JeamesSailor RT @patientchat: This chat was inspired by this year’s #ASCO18 theme: Delivering Discoveries: This chat was inspired by this year’s #ASCO18 theme: Delivering Discoveries: Expanding the Reach of Precision Medicine #patientchat |
 | Suzie Siegel @SuzieSiegel RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/hVzd9Xp3TE https://t.co/tAz6i2A1aF |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @patientchat: T1: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTarmRigj |
 | Heather McCullen @H_SalemOaks #patientchat (I wonder if I've just accidentally invited another chat to join us) https://t.co/CiRNICmSt4 |
| Vera Rulon FAHIMA @vrulon T1: experience w #prescisionmedicine as #patient - HTN (common condition) - trying to customize treatments, lifestyle w my doc #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T1: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTarmRigj |
| 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 @InspireIsHealth RT @patientchat: T1: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTarmRigj |
| Sanford Jeames; DHA, FASCO(He, Him) @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 Official @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 moved to Mastodon 🦣 @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 |
| Vera Rulon FAHIMA @vrulon @NCPDP Hypertension (sorry for the acronym... :) ) #patientchat |
| Patient Chat @patientchat T2: What do you think are the biggest challenges in developing personalized therapies? #patientchat https://t.co/VJ4LsUiuv5 |
| Sanford Jeames; DHA, FASCO(He, Him) @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: 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 |
| 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: T2: T2: What do you think are the biggest challenges in developing personalized therapies? #patientchat https://t.co/VJ4LsUiuv5 |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T1: T1: Tell us about your experience with #PrecisionMedicine, either as a patient or provider? #patientchat https://t.co/MLTarmRigj |
| 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, FASCO(He, Him) @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 adequate return for investors. #patientchat #precisionmedicine @SalemOaks https://t.co/pazH4RlqQ2 |
| 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 Official @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 @InspireIsHealth RT @patientchat: T2: 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 provided. Academic centers are good, but some community & regional cancer centers do not always have experienced oncologists or teams. #patientchat #rural #CBPR #disparities |
| 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 moved to Mastodon 🦣 @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): T2: Here's another challenge (2): #patients literacy and trust to share information w their doctor - communication on both sides is key #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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, FASCO(He, Him) @JeamesSailor RT @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 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 strategies that ensure personalized therapies are properly realized #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: T3: 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 |
| Christina Lizaso @btrfly12 RT @patientchat: T3: 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 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 |
| 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, MD @anish_koka RT @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 |
| Sanford Jeames; DHA, FASCO(He, Him) @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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, FASCO(He, Him) @JeamesSailor RT @patientchat: T3: 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 |
| 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 Official @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 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 |
| 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: 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @btrfly12: T3: 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 |
| Christina Lizaso @btrfly12 RT @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 |
| 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 consideration of patient background. Too many times, there is not consideration of #SDoH as it relates to effective therapy. #patientchat |
| 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, FASCO(He, Him) @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 |
| 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 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 |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @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 |
| Patient Chat @patientchat Topic 4 (T4:) coming up...https://t.co/jfSuBqqDDl #patientchat |
| Inspire @InspireIsHealth RT @btrfly12: T3: 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 |
| Vera Rulon FAHIMA @vrulon @btrfly12 Well put. Education & guidance is important - how communicated is as well #patientchat |
| Inspire @InspireIsHealth RT @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 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 #patientchat https://t.co/Qut6GwwyfY |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T4: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GOkGiGjnf |
| Patient Chat @patientchat RT @btrfly12: T3: 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 |
| Christina Lizaso @btrfly12 RT @vrulon: T3: T3: Genome sequencing is a personal choice. Some healthy people may wish to do preventative measures based on results. Some not. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @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: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GOkGiGjnf |
| Inspire @InspireIsHealth @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: @BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat |
| Christina Lizaso @btrfly12 RT @teaminspire: @BarbyIngle T3: @BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat |
| Barby Ingle Official @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, FASCO(He, Him) @JeamesSailor RT @btrfly12: T3: 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 |
| Sanford Jeames; DHA, FASCO(He, Him) @JeamesSailor RT @patientchat: T4: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GOkGiGjnf |
| Kevin Freiert @K_SalemOaks RT @teaminspire: @BarbyIngle T3: @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 "doomed" to get something later. For me, I think I'd rather be forewarned...I think. #patientchat https://t.co/h0Ljt5XMMP |
| 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 Official @BarbyIngle RT @teaminspire: @BarbyIngle T3: @BarbyIngle T3: Which reminds me of advocates like @bryceolson -- https://t.co/G1Sq87szfq. #patientchat |
| Sanford Jeames; DHA, FASCO(He, Him) @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 @InspireIsHealth RT @patientchat: T4: T4: Has precision medicine changed the way providers interact with patients? If yes, how so? #patientchat https://t.co/5GOkGiGjnf |
| 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 definitely help research. #patientchat |
| Christina Lizaso @btrfly12 RT @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 |
| Sanford Jeames; DHA, FASCO(He, Him) @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: T5: Precision medicines are costly. How can we influence insurers so more patients can benefit? #patientchat https://t.co/9HkXsTnDFQ |
 | 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, FASCO(He, Him) @JeamesSailor RT @patientchat: T5: T5: Precision medicines are costly. How can we influence insurers so more patients can benefit? #patientchat https://t.co/9HkXsTnDFQ |
| 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: T5: Precision medicines are costly. How can we influence insurers so more patients can benefit? #patientchat https://t.co/9HkXsTnDFQ |
| 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 Official @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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, FASCO(He, Him) @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 moved to Mastodon 🦣 @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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba 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: 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @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 |
| 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 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 |
| 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 predict, that way. Prediction difficult. #patientchat |
| 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 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 |
| 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 degree in molecular genetics - I wish they had a better explanation. #patientchat https://t.co/QkQEWQWKzL https://t.co/XsQyrjC2Hb |
| Christina Lizaso @btrfly12 RT @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 |
| 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 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: T6: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH |
 | Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @patientchat: T6: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH |
| Sanford Jeames; DHA, FASCO(He, Him) @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: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH |
| Sanford Jeames; DHA, FASCO(He, Him) @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. The gov's 100million cohort study is such an effort on a grand scale. #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T6: T6: What do you see for the future of precision medicine? #patientchat https://t.co/9ZEftoeGwH |
| Christina Lizaso @btrfly12 RT @JeamesSailor: @vrulon T5: @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 |
| 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 @InspireIsHealth RT @patientchat: T6: 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: Join/Share: "Precision Medicine Today" Empowered #patientchat Fri 6/15 1pmET #epatient #ptexp #s4pm #hcsm #hcsmca #hcldr #patientadvocacy #patientinvolvement #personalizedmedicine #precisionmedicine https://t.co/S6MTjBWt99 https://t.co/GlxNDPzPGm |
| 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 Official @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: 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 |
| Christina Lizaso @btrfly12 RT @BarbyIngle: T6: 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 |
| Christina Lizaso @btrfly12 RT @K_SalemOaks: T6 Precision medicine could be capstone for #patientpartnership Individual teams organized around (and by) each patient. #patientchat |
| 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 moved to Mastodon 🦣 @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: T7: What role do empowered patients play in the #PrecisionMedicine evolution/revolution? #patientchat https://t.co/4aBnlgcFHo |
| Christina Lizaso @btrfly12 RT @paulcmclean: T3: 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 @InspireIsHealth RT @patientchat: T7: T7: What role do empowered patients play in the #PrecisionMedicine evolution/revolution? #patientchat https://t.co/4aBnlgcFHo |
| Barby Ingle Official @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: 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 |
| 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 knowing when to get involved, asking the right questions, and clearly articulating the patient perspective. #patientchat @SalemOaks https://t.co/7nIvzGDy20 |
| 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 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 |
| 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 moved to Mastodon 🦣 @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 @InspireIsHealth RT @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 |
| 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 moved to Mastodon 🦣 @davidcnorrismd RT @MaryOCMack: T7: T7: Empowered patients have insights that clinical trialists may not have. Share your ideas. #patientchat |
| Patient Chat @patientchat RT @btrfly12: T7: 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 |
| Vera Rulon FAHIMA @vrulon @btrfly12 love this comment... #patientchat |
| Christina Lizaso @btrfly12 RT @MaryOCMack: T7: T7: Empowered patients have insights that clinical trialists may not have. Share your ideas. #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: 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 |
| Barby Ingle Official @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: 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 |
| Patient Chat @patientchat @K_SalemOaks Thank you for being apart of both chats! :) #patientchat |
| 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 moved to Mastodon 🦣 @davidcnorrismd RT @btrfly12: Whatever you are researching, there is a group of patients who WANT to get involved. Come find us. #patientchat #precisionmedicine |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @btrfly12: Whatever you are researching, there is a group of patients who WANT to get involved. Come find us. #patientchat #precisionmedicine |
| 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 moved to Mastodon 🦣 @davidcnorrismd RT @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 |
| 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 moved to Mastodon 🦣 @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. 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 |
| Christina Lizaso @btrfly12 RT @davidcnorrismd: @K_SalemOaks … apropos of which: @K_SalemOaks … apropos of which: https://t.co/VfLGr7Q8x3 #patientchat |
| Jeremy Murphy @jeremypmurphy RT @patientchat: T7: T7: What role do empowered patients play in the #PrecisionMedicine evolution/revolution? #patientchat https://t.co/4aBnlgcFHo |
| 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 determine #epidemiology (if appropriate) #patientchat https://t.co/iMpkeMZPPD |
#patientchat content from Twitter.