#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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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 |
 | Jamie Roger @JamieRoger8 Jamie, from CT. Glad to be part of #patientchat today. Looking forward to this discussion. #patientleaders #PatientsIncluded |
| 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 w/ special interest in phase 1 cancer trial design & ethics. Eager to learn here how patients experience, regard and participate in IRBs. #patientchat |
| Jamie Roger @JamieRoger8 @patientchat @power4patients Hello Kara. #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Kevin Freiert @K_SalemOaks This is Kevin from CT. It seems like forever since I have been able to focus on #patientchat This looks like a good one for all the #RightToTry tweeters. @hcldr @s4pm @SalemOaks @Savvy_coop #PtExp |
 | Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @gratefull080504 : President of the Voice of Patient Experienced in building #clinicaltrials awareness for several #raredisease candidates #patientchat |
| Patient Chat @patientchat @JamieRoger8 @power4patients Hi! Glad you could join in today Jamie! #patientchat |
 | Maya Northen Augelli @mayanorthen Maya from Philly here! #patientchat |
| 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 |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
 | Becky Brandt DegenRN @bbhomebody Hi 🖐 I'm Becky RN, #RareDisease & #intractablepain patient & advocate from WA state. Cofounder @Cpnervecenter With my dynamo partner @lisadbudzinski #patientchat https://t.co/43mBGMmaLi |
| Jamie Roger @JamieRoger8 @bbhomebody @Cpnervecenter @lisadbudzinski Glad you're here @bbhomebody! How has your week been? #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is IRBs and Me - Patients as Leaders in Research https://t.co/oj5JnnzN5p https://t.co/rQNFaeTlEH |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey HI, ALL! Mighty Casey here, #bcsm + #openscience + #opendata + #healthpolicy firestarter. Attending remotely (and a bit robotically via scheduled tweets) from London, where I'm on vacation after #CochraneForAll conf. #PatientChat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat My primary interest is designing #clinicaltrials for upstream interventions for #KidneyDisease |
| Jamie Roger @JamieRoger8 @MightyCasey Hey Casey, how has your week been? #patientchat |
| 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 |
 | Barby Ingle Official @BarbyIngle Hello #PatientChat Glad to be joining in from AZ today. Just coming off infusion therapy after taking a mighty fall, so I hope my comments make sense and Looking forward to participating and practicing concentration ;) |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
 | EUPATI_CH @EUPATI_CH @patientchat + others. Hello from Eupati Switzerland. Keen to learn more about this role for getting #patientsinvolved. #patientchat |
| Patient Chat @patientchat T1: What does the Institutional Review Board (IRB) do for the protection of human subjects in research? #patientchat https://t.co/n8bQGpP3fE |
| Jamie Roger @JamieRoger8 @BarbyIngle Hello @BarbyIngle sorry to hear about the fall. Hope you recover quickly from the damage and the infusion therapy helps. #patientchat |
 | Open Science @_open_science_ RT @MightyCasey: HI, ALL! Mighty Casey here, #bcsm + #openscience + #opendata + #healthpolicy firestarter. Attending remotely (and a bit robotically via scheduled tweets) from London, where I'm on vacation after #CochraneForAll conf. #PatientChat |
 | mary @zebrafinch RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Beth Morton @beth_morton Hi all, Beth from Vermont. I'm a #migraine patient & advocate w/a background in edu policy/program eval so I know a thing or two about the #IRB process! Looking forward to learning more about clinical trial/health research IRBs! #patientchat |
| Jamie Roger @JamieRoger8 @bbhomebody @Cpnervecenter @lisadbudzinski As long as it didn't crush your humor then you must be doing okay. I do love Fall though, it's beautiful in the Northeast! #patientchat |
| Kevin Freiert @K_SalemOaks T1 IRBs are in place to ensure human research is ethical. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
 | Alan Brewington @abrewi3010 A1 Never hear of the IRB. #patientchat |
| Jamie Roger @JamieRoger8 @beth_morton Hope your well Beth. Haven't talked to you lately, how are the migraines? #patientchat |
| Beth Morton @beth_morton A1: At the heart of it in the soc sci world, IRBs weigh the risk and benefits of research, aiming to protect patients from harm, and uphold research ethics. #patientchat |
| Jamie Roger @JamieRoger8 RT @beth_morton: A1: A1: At the heart of it in the soc sci world, IRBs weigh the risk and benefits of research, aiming to protect patients from harm, and uphold research ethics. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 T1:I prefer the term person rather than subject Isn't the primary responsibility of the IRB is to ensure the study is conducted ethically? #patientchat |
 | Savvy Cooperative | #AskPatients @savvy_coop RT @K_SalemOaks: T1 IRBs are in place to ensure human research is ethical. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| Beth Morton @beth_morton @JamieRoger8 Hi Jaime! I'm doing okay. Trialing #Aimovig! Jury is out, but about to do third injections and hoping to see more improvement. Have you been well? #patientchat |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hello all; I'll be lurking while working today. #patientchat https://t.co/aeLcbisrQ5 |
| Barby Ingle Official @BarbyIngle T1: The IRB has the responsibility of reviewing prior to starting all research involving humans. The IRB is concerned w protecting the welfare, rights, and privacy of human subjects. They approve, disapprove, monitor all the aspects of the clinical trials on humans #PatientChat |
| Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/4dYAzaTGj3 #patientchat |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: T1: T1: The IRB has the responsibility of reviewing prior to starting all research involving humans. The IRB is concerned w protecting the welfare, rights, and privacy of human subjects. They approve, disapprove, monitor all the aspects of the clinical trials on humans #PatientChat |
| Patient Chat @patientchat RT @BarbyIngle: T1: T1: The IRB has the responsibility of reviewing prior to starting all research involving humans. The IRB is concerned w protecting the welfare, rights, and privacy of human subjects. They approve, disapprove, monitor all the aspects of the clinical trials on humans #PatientChat |
| Patient Chat @patientchat Why is an Institutional Review Board (IRB) important? Tell us about your experiences, learnings, and findings. #patientchat https://t.co/CLml3X0q5o |
| Jamie Roger @JamieRoger8 @ShereesePubHlth Fancy seeing you here. #patientchat |
 | iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T1: T1: The IRB has the responsibility of reviewing prior to starting all research involving humans. The IRB is concerned w protecting the welfare, rights, and privacy of human subjects. They approve, disapprove, monitor all the aspects of the clinical trials on humans #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: #IRB is the firewall between research and patients, looking to ensure safety for trial participants and transparency on the part of researchers. YMMV tho. Here's an example: https://t.co/82nHhEwZS0 HT @SaraRiggare #patientchat |
 | Ken Taylor, RPIC @KenRayTaylor T1: IRB adds a layer of protection when they approve disapprove and require modifications. Helping us feel more safe to participate in the current research being done. #patientchat |
 | Annette McKinnon @anetto @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop T1 The IRBs can also be very restrictive about the role of patients when they are partners on research projects. Could some of that be lack of forethought by the researchers? #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd @gratefull080504 OTOH, if the term ‘subject’ makes us uneasy, this might be a good thing. We should always feel uneasy about experiments involving people, and remain eternally vigilant for every possible ethical lapse we might make. #patientchat |
| Alan Brewington @abrewi3010 @bbhomebody 👋 Becky!!! Im glad I’m not the only one learning right now. #PatientChat |
| Becky Brandt DegenRN @bbhomebody @ShereesePubHlth 🖐Hi Shereese Happy Friday! #patientchat |
 | Heather McCullen @H_SalemOaks Hi #patientchat Heather from @SalemOaks. I’m out grabbing lunch. I’ll have to catch up when I get back to my desk. Sounds like a great topic |
| Maya Northen Augelli @mayanorthen @bbhomebody @abrewi3010 Me too! I know about IRB, but don't know the ins and outs. #patientchat |
| Alan Brewington @abrewi3010 RT @MightyCasey: A1: A1: #IRB is the firewall between research and patients, looking to ensure safety for trial participants and transparency on the part of researchers. YMMV tho. Here's an example: https://t.co/82nHhEwZS0 HT @SaraRiggare #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 T2:Speaking from my professional experience, IRBs can be a cumbersome process which can delay the initiation of a trial #patientchat |
| Kevin Freiert @K_SalemOaks T1 I think it does refelct some lake of forethought. However, I think it is more about being creatures of habit. No one ever brings it up. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| Kevin Freiert @K_SalemOaks uhh - spelling is not my thing today. #patientchat |
| Alan Brewington @abrewi3010 @mayanorthen @bbhomebody Interesting since we are supposed to be educated epatients. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @bbhomebody #patientchat https://t.co/ee6Xr8SYd8 |
| Barby Ingle Official @BarbyIngle T2. The IRB is important because it keeps us safe while going through #clinicaltrials They set parameters as 2 what is ethical & responsible to put trial subjects through. I think it's important that they also have at least 1 independent representative on their board #patientchat |
| EUPATI_CH @EUPATI_CH T2. We hope patients on IRB might catch research proposals that are dubious, unethical, or duplication of work already done. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @davidcnorrismd: @gratefull080504 OTOH, if the term ‘subject’ makes us uneasy, this might be a good thing. We should always feel uneasy about experiments involving people, and remain eternally vigilant for every possible ethical lapse we might make. #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T2. The IRB is important because it keeps us safe while going through #clinicaltrials They set parameters as 2 what is ethical & responsible to put trial subjects through. I think it's important that they also have at least 1 independent representative on their board #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T1: T1: IRB adds a layer of protection when they approve disapprove and require modifications. Helping us feel more safe to participate in the current research being done. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @anetto : Excellent point I am unclear how the patient voice is utilized Are researchers speaking for patients or are patients speaking for themselves? #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up...https://t.co/4dYAzaTGj3 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: Would love to hear @MyelomaTeacher on this. Cyndy, you got your ears on? What's your take on #IRB "experiences, learnings, and findings"? #patientchat |
| Kevin Freiert @K_SalemOaks I thought you were kidding Alan. IRBs are a critical step for anyone setting up a clinical trial and for the people involved. We need to look at ways to highlight this in our education. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T2. The IRB is important because it keeps us safe while going through #clinicaltrials They set parameters as 2 what is ethical & responsible to put trial subjects through. I think it's important that they also have at least 1 independent representative on their board #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T1: T1: IRB adds a layer of protection when they approve disapprove and require modifications. Helping us feel more safe to participate in the current research being done. #patientchat |
| Kevin Freiert @K_SalemOaks T2 The origins of IRBs go back to the holocaust and the trials at Nuremburg. The unapologetic non-consensual human experimentation that took place then is something we never want to see return. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| Patient Chat @patientchat T3: What do you think are the impacts, if any, of IRBs on clinical innovation? #patientchat https://t.co/jffMSxTAeS |
 | Richard Zhao @richardzhao #patientchat Sorry, I am still in a meeting now. I probably can’t make it to today’s chat. Thanks for the invitation. |
| Kevin Freiert @K_SalemOaks T2 IRBs are also hubs of experience with many clinical trials. This can lead to better application of accumulated knowledge that may otherwise just fade away. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @K_SalemOaks: T2 IRBs are also hubs of experience with many clinical trials. This can lead to better application of accumulated knowledge that may otherwise just fade away. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| Kevin Freiert @K_SalemOaks T3 Unfortunately, whenever you have checks and balances, and are talking about managing risk, such groups are bound to slow down innovation. They a reluctant to "try" new things. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| EUPATI_CH @EUPATI_CH Basic question: Is an IRB the same as a scientific advisory board? (Sorry, not in USA.) #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T2: Protection of the rights and welfare of human research subjects. Its important for us to feel like we are protected and undue harm will come from participating in the research being our personal health or our credibility when participating in other research. #patientchat |
| Maya Northen Augelli @mayanorthen @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop I feel like I know the basics, but not enough to share knowledge that others wouldn't have. I think partly b/c I haven't had the chance to be involved in trials really. #patientchat |
| Beth Morton @beth_morton @gratefull080504 This is true of my experiences outside #clinicaltrials. I appreciate that the IRB process keeps studies safe/ethical, but often, approvals get tripped up by bureaucratic rules that truly don't affect either. #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T2: T2: Protection of the rights and welfare of human research subjects. Its important for us to feel like we are protected and undue harm will come from participating in the research being our personal health or our credibility when participating in other research. #patientchat |
| Annette McKinnon @anetto @gratefull080504 Credit goes to the researchers for engaging patients, but they aren’t looking at patients as partners and it is reflected in their submissions to the IRBs #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T2: T2: Protection of the rights and welfare of human research subjects. Its important for us to feel like we are protected and undue harm will come from participating in the research being our personal health or our credibility when participating in other research. #patientchat |
| Kevin Freiert @K_SalemOaks No. Actually in the EU, the Ethics Committees are very similar to IRBs. Same function and purpose. #patientchat |
| Alan Brewington @abrewi3010 @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop No I was not kidding. There is a lot of knowledge out there & somehow I missed this. #patientchat |
| Patient Chat @patientchat RT @KenRayTaylor: T2: T2: Protection of the rights and welfare of human research subjects. Its important for us to feel like we are protected and undue harm will come from participating in the research being our personal health or our credibility when participating in other research. #patientchat |
 | Claire Snyman @clairehsnyman RT @KenRayTaylor: T1: T1: IRB adds a layer of protection when they approve disapprove and require modifications. Helping us feel more safe to participate in the current research being done. #patientchat |
 | Deb Constien @debconstien RT @K_SalemOaks: T3 Unfortunately, whenever you have checks and balances, and are talking about managing risk, such groups are bound to slow down innovation. They a reluctant to "try" new things. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
 | Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What do you think are the impacts, if any, of IRBs on clinical innovation? #patientchat https://t.co/jffMSxTAeS |
| Alan Brewington @abrewi3010 A3 hopefully they are bridging the communication gap between us patients and clinical trial leaders. #patientchat |
| Kevin Freiert @K_SalemOaks @anetto @gratefull080504 I think that the IRBs are the ones who are trying to represent patients' perspectives. They are typically made up of healthcare professionals and lawyers. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd Surprisingly, perhaps, this ain’t ’necessarily’ so. In the particular case of phase 1 oncology dose-escalation designs, an IRB could *in theory* advance the state of methodology, by enforcing the #PrecautionaryCoherence principle. #patientchat |
| Jamie Roger @JamieRoger8 RT @EUPATI_CH: T2. We hope patients on IRB might catch research proposals that are dubious, unethical, or duplication of work already done. #patientchat |
| Patient Empowerment Network @power4patients RT @BarbyIngle: T2. The IRB is important because it keeps us safe while going through #clinicaltrials They set parameters as 2 what is ethical & responsible to put trial subjects through. I think it's important that they also have at least 1 independent representative on their board #patientchat |
| Patient Chat @patientchat #patientchat |
| Kevin Freiert @K_SalemOaks @abrewi3010 @hcldr @S4PM @SalemOaks @savvy_coop I am going to put IRB Education on my to do list. @SalemOaks #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @davidcnorrismd: Surprisingly, perhaps, this ain’t ’necessarily’ so. In the particular case of phase 1 oncology dose-escalation designs, an IRB could *in theory* advance the state of methodology, by enforcing the #PrecautionaryCoherence principle. #patientchat |
| Annette McKinnon @anetto T3 IRBs don’t seem to be innovation hubs. They are conservative and reflective. Even having patients sit on IRBs is fairly recent I think. #patientchat |
| Barby Ingle Official @BarbyIngle T3 I think that IRB's can sometimes hurt innovation. I do know some providers who do "innovative treatments" vs research studies so that they can get to the patients and try to help faster. This can be both positive an negative for safety. #patientchat |
 | Melissa VanHouten @melissarvh What impact does this have on #RareDisease patients? #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Current situation #patientchat https://t.co/RzsAPIYP9E |
| Patient Empowerment Network @power4patients RT @patientchat: Why is an Institutional Review Board (IRB) important? Tell us about your experiences, learnings, and findings. #patientchat https://t.co/CLml3X0q5o |
| Patient Chat @patientchat Topic 4 (T4:) coming up...https://t.co/4dYAzaTGj3 #patientchat https://t.co/rv5ZpLwhlY |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @patientchat: Topic 4 (T4:) coming up...https://t.co/4dYAzaTGj3 #patientchat https://t.co/rv5ZpLwhlY |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T3 I think that IRB's can sometimes hurt innovation. I do know some providers who do "innovative treatments" vs research studies so that they can get to the patients and try to help faster. This can be both positive an negative for safety. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T3 I think that IRB's can sometimes hurt innovation. I do know some providers who do "innovative treatments" vs research studies so that they can get to the patients and try to help faster. This can be both positive an negative for safety. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat This chat has stimulated my to research IRB design and the role of the #patientvoice |
| Alan Brewington @abrewi3010 @mayanorthen @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop I’ve been involved in a couple of trials but never came across the IRB. #patientchat |
| Patient Chat @patientchat T4: Should patients get involved in the IRB process? If so, how can they do so? #patientchat https://t.co/v3JTl20Cui |
| EUPATI_CH @EUPATI_CH T3. Patients on IRBs (thanks @K_SalemOaks) can spot heavy burden on patients in proposals + propose making them less onerous. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd More details on that concept here: #patientchat https://t.co/knHiLfGZWU |
| Kevin Freiert @K_SalemOaks True. I think that the oncology world may be more progressive in their innovation than some other areas. Do all Phase 1 studies have such innovative IRBs? #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @patientchat Do IRBs allow patients to be a participant in the design of IRBs? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @JamieRoger8 IN. SANE. Was at @cochranecollab #CochraneForAll in Edinburgh thru last Tues, brain still on WTF INPUT OVERLOAD. In London on vacation now. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @K_SalemOaks: True. I think that the oncology world may be more progressive in their innovation than some other areas. Do all Phase 1 studies have such innovative IRBs? #patientchat |
| Alan Brewington @abrewi3010 A4 patients should be involved in all aspects of the healthcare profession. Our experience and stories elevate the search for a higher QOL #patientchat |
| Annette McKinnon @anetto T4 Patients and caregivers can and should be members of IRBs. That may be the most direct way to be involved. #patientchat |
| Barby Ingle Official @BarbyIngle T4. I believe that a patient can be on an IRB board and would have a lot to offer from the patient perspective. Although I cant think of a time that it has been done, I hope it becomes common practice one day. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @BarbyIngle: T4. I believe that a patient can be on an IRB board and would have a lot to offer from the patient perspective. Although I cant think of a time that it has been done, I hope it becomes common practice one day. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: Here's where my YMMV (your mileage may vary) warning comes in. #IRB, like any other oversight tribe, can become too entrenched in "how we do things here" vs being open to new approaches. Why #PatientsIncluded is so ****ing important. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @bbhomebody Hey, I'm a writer, occasionally I have words 🙃🙃 #patientchat |
| Kevin Freiert @K_SalemOaks T4a Yes T4b That's a good question. Does anyone have experience getting involved on an IRB that we could spread to others? #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd @K_SalemOaks I regret I had to qualify my remark with “in theory”! This has not yet happened to my knowledge, but could very soon—especially with patient involvement and pressure. Wrote about this in THCB last week: https://t.co/WG6tpeyLYL #patientchat |
| Alan Brewington @abrewi3010 RT @MightyCasey: A3: A3: Here's where my YMMV (your mileage may vary) warning comes in. #IRB, like any other oversight tribe, can become too entrenched in "how we do things here" vs being open to new approaches. Why #PatientsIncluded is so ****ing important. #patientchat |
| Beth Morton @beth_morton @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop Yes! I would love to know *how* to get involved with IRBs (and research design development) as a patient. Wouldn't even know where to start. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd T4: #patientchat |
| Patient Chat @patientchat #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 IT4 think they should How do you initiate this process #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @JamieRoger8 @cochranecollab Oh yeah. I'm #ADHD for life, so more is better. Processing over vacay in London, one of my home towns and one of the greatest cities on the planet = #bonusround #patientchat |
| Kevin Freiert @K_SalemOaks T4 FDA has been trying to encourage more patient involvement. They now ask sponsor to submit "patient input" with their NDAs. We should lobby FDA to change the IRB regs to encourage patient membership. (encourage = mandate?) #patientchat @Salemoaks @S4PM |
| Alan Brewington @abrewi3010 @MightyCasey @bbhomebody Occasionally have words??? I’ve never seen you without your 2 cents 😜 #patientchat |
 | Swapnil Hiremath @hswapnil@bsky.social @hswapnil @anetto at least since 2014 in Canada (based on TCPS) https://t.co/h7yVj5JkhT #patientchat https://t.co/MBRSldckyp |
| Jamie Roger @JamieRoger8 @MightyCasey @cochranecollab glad you got to fit in a #bonusround #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up...https://t.co/4dYAzaTGj3 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @abrewi3010 @bbhomebody LOL you're on to me 😛 #patientchat https://t.co/9wPt1D4UTO |
| EUPATI_CH @EUPATI_CH T4. https://t.co/akhf9VHH3p (EUPATI starter kit for patient involvement in ethics committees) could be useful. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: SPEAK UP to your clinical team! Your oncologist, your radiologist, your orthopedist, your endocrinologist, your rheumatologist, your primary care doc. Tell 'em you want an invite to the #science party, and to SIGN. YOU. UP. #PatientsIncluded #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T3: Sometimes being safe will keep needed information from coming to the surface. Progress can slow to the point of discouragement to proceed. Research is needed to progress in the field of heath care, however many treatments can and should be continued without delay #patientchat |
| Annette McKinnon @anetto As a member of a cohort I am a 'subject' of research, and I had issues with the consent that was passed by ethics review. It seemed unethical but I had no way to discuss or get a change, beyond withdrawing #patientchat |
| Patient Chat @patientchat T5: What measures should be implemented to improve the IRB process? #patientchat https://t.co/aMYVs68R26 |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @anetto: As a member of a cohort I am a 'subject' of research, and I had issues with the consent that was passed by ethics review. It seemed unethical but I had no way to discuss or get a change, beyond withdrawing #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 Have to run #patientchat |
| Annette McKinnon @anetto RT @hswapnil: @anetto at least since 2014 in Canada (based on TCPS) https://t.co/h7yVj5JkhT #patientchat https://t.co/MBRSldckyp |
| Kevin Freiert @K_SalemOaks T5 Clearly we need to simply increase awareness and understanding of the IRB role, function, and authority. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| Alan Brewington @abrewi3010 RT @MightyCasey: A4: A4: SPEAK UP to your clinical team! Your oncologist, your radiologist, your orthopedist, your endocrinologist, your rheumatologist, your primary care doc. Tell 'em you want an invite to the #science party, and to SIGN. YOU. UP. #PatientsIncluded #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Gawd I love tweet chatting with a gin in my hand 🤡🤡🙃🙃 #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T4. I believe that a patient can be on an IRB board and would have a lot to offer from the patient perspective. Although I cant think of a time that it has been done, I hope it becomes common practice one day. #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T3: T3: Sometimes being safe will keep needed information from coming to the surface. Progress can slow to the point of discouragement to proceed. Research is needed to progress in the field of heath care, however many treatments can and should be continued without delay #patientchat |
| Patient Empowerment Network @power4patients @beth_morton @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop Maybe this is a topic we (PEN) could explore further in one of the resource guides we're creating through the end of this year and into 2019. Anyone interested in giving us a hand getting it going? #patientchat |
 | J.B. et al., 🔭𓆏 🌊 @negronjb RT @anetto: As a member of a cohort I am a 'subject' of research, and I had issues with the consent that was passed by ethics review. It seemed unethical but I had no way to discuss or get a change, beyond withdrawing #patientchat |
| Patient Chat @patientchat @gratefull080504 Thanks for joining and sharing your thoughts Kevin! Have a good weekend! #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T4. I believe that a patient can be on an IRB board and would have a lot to offer from the patient perspective. Although I cant think of a time that it has been done, I hope it becomes common practice one day. #patientchat |
| J.B. et al., 🔭𓆏 🌊 @negronjb RT @anetto: @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop T1 The IRBs can also be very restrictive about the role of patients when they are partners on research projects. Could some of that be lack of forethought by the researchers? #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T3: T3: Sometimes being safe will keep needed information from coming to the surface. Progress can slow to the point of discouragement to proceed. Research is needed to progress in the field of heath care, however many treatments can and should be continued without delay #patientchat |
| J.B. et al., 🔭𓆏 🌊 @negronjb RT @gratefull080504: @anetto : @anetto : Excellent point I am unclear how the patient voice is utilized Are researchers speaking for patients or are patients speaking for themselves? #patientchat |
| Patient Chat @patientchat RT @K_SalemOaks: T5 Clearly we need to simply increase awareness and understanding of the IRB role, function, and authority. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| EUPATI_CH @EUPATI_CH T5. Patients need skills to do this, w clear roles & responsibilities. Please share guidelines + tools you know of. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T4: Yes I think it would be a good thing for patients to get involved. The patient voice is important to the process and also educates the patients. More education is always good on both sides. #patientchat |
| Jamie Roger @JamieRoger8 @abrewi3010 I agree. #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T4: T4: Yes I think it would be a good thing for patients to get involved. The patient voice is important to the process and also educates the patients. More education is always good on both sides. #patientchat |
| Kevin Freiert @K_SalemOaks @power4patients @beth_morton @hcldr @S4PM @SalemOaks @savvy_coop Absolutely. My mind is already sketching out the research needed to pull the materials together. #patientchat |
| Patient Chat @patientchat RT @EUPATI_CH: T5. Patients need skills to do this, w clear roles & responsibilities. Please share guidelines + tools you know of. #patientchat |
| Patient Empowerment Network @power4patients RT @K_SalemOaks: T5 Clearly we need to simply increase awareness and understanding of the IRB role, function, and authority. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T4: T4: Yes I think it would be a good thing for patients to get involved. The patient voice is important to the process and also educates the patients. More education is always good on both sides. #patientchat |
| Beth Morton @beth_morton A5: Is the IRB process as slow in #clinicaltrials as it is in the social science world? If so, anything that can encourage speed of review w/o sacrificing ethical standards. Pushing for innovation, patient involvement seem to be identified priorities. #patientchat |
| Patient Empowerment Network @power4patients @K_SalemOaks @beth_morton @hcldr @S4PM @SalemOaks @savvy_coop Sounds like a good opportunity to collaborate :) #patientchat |
| Kevin Freiert @K_SalemOaks @EUPATI_CH And therein lies the problem. I am not sure there is a great, easily digestible source for this info. Do know offhand if EUPATI has any content on Ethics Committees? #patientchat |
| Alan Brewington @abrewi3010 A5 Does the clinical trial follow a “how might we...?” Methodology. Does the trial raise a patients QOL? If the trial fails, what can be learned to move forward. #patientchat |
| Jamie Roger @JamieRoger8 RT @MightyCasey: A4: A4: SPEAK UP to your clinical team! Your oncologist, your radiologist, your orthopedist, your endocrinologist, your rheumatologist, your primary care doc. Tell 'em you want an invite to the #science party, and to SIGN. YOU. UP. #PatientsIncluded #patientchat |
| Patient Chat @patientchat Final topic coming up...https://t.co/4dYAzaTGj3 #patientchat |
| Barby Ingle Official @BarbyIngle T5. Streamlining the IRB processes could help improve flexibility in the regulations. This could help reduce trial burdens, while protecting participants at the same time #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Update on current situation.... #patientchat https://t.co/OqNpcJoGd5 |
| EUPATI_CH @EUPATI_CH T4 How do patients typically find out about IRB opportunities? Our local hospital puts out occasional appeals. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T5. Streamlining the IRB processes could help improve flexibility in the regulations. This could help reduce trial burdens, while protecting participants at the same time #PatientChat |
| Patient Chat @patientchat BONUS: Do you think that n-of-1 trials need IRB review? #patientchat https://t.co/GoVM85opls |
| Ken Taylor, RPIC @KenRayTaylor T5: A single IRB of record for multiple site studies could help provide more input for the success of the research. Also more input will add another layer of protection at the same time could speed up the progress of the research. #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T5. Streamlining the IRB processes could help improve flexibility in the regulations. This could help reduce trial burdens, while protecting participants at the same time #PatientChat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T5: T5: A single IRB of record for multiple site studies could help provide more input for the success of the research. Also more input will add another layer of protection at the same time could speed up the progress of the research. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @power4patients I vas dere, Cholly. (Take to Google to get that one.) #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T5: T5: A single IRB of record for multiple site studies could help provide more input for the success of the research. Also more input will add another layer of protection at the same time could speed up the progress of the research. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: Oh, this is an easy one! LET PATIENTS HELP. #PatientsIncluded #codesign #patientchat cc @ePatientDave @SaraRiggare @corrie_painter |
| Jamie Roger @JamieRoger8 @bbhomebody SO cute! and I feel like she(?) is already bigger than the last time you posted a pic. #patientchat #puppy #puppylove |
| Kevin Freiert @K_SalemOaks BONUS Trick question? Isn't every visit to your physician an experiment? They create a hypothesis, offer treatment and wait for results. Is the intent treatment or research? Objectives are not the same. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| Alan Brewington @abrewi3010 Yes, let patients help! #patientchat #everyoneincluded |
| Barby Ingle Official @BarbyIngle Bonus: I dont think a N:1 trial needs IRB review board. But it would be good if the researcher did follow a good trial protocol for the study so that outcome could be more valid, but if long-term harm is possible outcome, then that needs to be shared for sure! #PatientChat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @K_SalemOaks: BONUS Trick question? Isn't every visit to your physician an experiment? They create a hypothesis, offer treatment and wait for results. Is the intent treatment or research? Objectives are not the same. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #RightToTry |
| 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Bonus round: #nof1 should definitely work with #irb *IF* IRB is #woke to #patientsincluded. It'll take time, but we gotta start banging on the doors. Right @SaraRiggare #PatientChat |
| Patient Empowerment Network @power4patients RT @patientchat: BONUS: BONUS: Do you think that n-of-1 trials need IRB review? #patientchat https://t.co/GoVM85opls |
| Jamie Roger @JamieRoger8 @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop True. My surgeon said he has never tried two specific (and intended) procedures at once but he thinks it will be the most effective route. Experiment, maybe... worth being an n=1 guinea big, yes. #patientchat |
| EUPATI_CH @EUPATI_CH CT: We'd love to see more tools, checklists, guidelines to help patients navigate this task. #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd @K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop This goes full circle back to our earlier discussion around ‘patient’ vs ‘subject’. #patientchat |
| Barby Ingle Official @BarbyIngle CT: Everyone have an amazing weekend... and keep HOPE alive #PatientChat #ChronicPainAwarenessMonth #clinicaltrials #GenerationP |
| Ken Taylor, RPIC @KenRayTaylor Bonus: Depends largely on if the research can cause harm to the patient and how easy it is for the patient to understand the research. Much research is helpful to the public and not invasive to the subject that would not need an IRB overview. #patientchat |
| Heather McCullen @H_SalemOaks RT @EUPATI_CH: CT: CT: We'd love to see more tools, checklists, guidelines to help patients navigate this task. #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: Bonus: Bonus: I dont think a N:1 trial needs IRB review board. But it would be good if the researcher did follow a good trial protocol for the study so that outcome could be more valid, but if long-term harm is possible outcome, then that needs to be shared for sure! #PatientChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: CT: CT: Everyone have an amazing weekend... and keep HOPE alive #PatientChat #ChronicPainAwarenessMonth #clinicaltrials #GenerationP |
 | Salem Oaks @SalemOaks RT @power4patients: @K_SalemOaks @beth_morton @hcldr @S4PM @SalemOaks @savvy_coop Sounds like a good opportunity to collaborate :) #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: Bonus: Bonus: Depends largely on if the research can cause harm to the patient and how easy it is for the patient to understand the research. Much research is helpful to the public and not invasive to the subject that would not need an IRB overview. #patientchat |
 | Dave deBronkart @ePatientDave @MightyCasey @SaraRiggare @corrie_painter TFW you stumble across a tchat you didn't know was happening that quotes you and you're like "WHAT??" and wish you had @MightyCasey 's arsenal of GIFs. #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: Bonus: Bonus: Depends largely on if the research can cause harm to the patient and how easy it is for the patient to understand the research. Much research is helpful to the public and not invasive to the subject that would not need an IRB overview. #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: Bonus: Bonus: I dont think a N:1 trial needs IRB review board. But it would be good if the researcher did follow a good trial protocol for the study so that outcome could be more valid, but if long-term harm is possible outcome, then that needs to be shared for sure! #PatientChat |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: CT: CT: Everyone have an amazing weekend... and keep HOPE alive #PatientChat #ChronicPainAwarenessMonth #clinicaltrials #GenerationP |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ePatientDave @SaraRiggare @corrie_painter DUDE,YOU DO! Just hit that GIF icon and PARTY. DOWN. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor CT: Keep the research going and be safe! New discoveries are always needed. Have a great weekend. #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat today! I will tweet out the transcript about 15 minutes past the hour |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: CT: CT: Keep the research going and be safe! New discoveries are always needed. Have a great weekend. #patientchat |
| Kevin Freiert @K_SalemOaks CT: This was a very stimulating hour. Thanks everyone for the input and openness. Have a great weekend! #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: CT: CT: Keep the research going and be safe! New discoveries are always needed. Have a great weekend. #patientchat |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, Oct 5th at 1pm ET | 10am PT https://t.co/nZ51Hy3wn6 Hope to see you there! |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd CT: Ethical oversight need not be an obstacle or drag on innovation. Properly done, it can even spur innovation. Definition of “properly done”? … #PatientsIncluded! #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Jamie Roger @JamieRoger8 @BarbyIngle @powerofpain You too! #patientchat |
| David C. Norris, MD moved to Mastodon 🦣 @davidcnorrismd RT @patientchat: The next Empowered #patientchat will be Friday, Oct 5th at 1pm ET | 10am PT https://t.co/nZ51Hy3wn6 Hope to see you there! |
| Jamie Roger @JamieRoger8 Great hour, it was very informative and engaging. Hope everyone has a great close to their weeks. #patientchat |
| Barby Ingle Official @BarbyIngle Top Influencers of #patientchat 9/21/2018 👉 @S4PM @patientchat @SalemOaks @hcldr @savvy_coop @K_SalemOaks @BarbyIngle @KenRayTaylor @power4patients @bbhomebody https://t.co/pa6lz85XHt via @symplur |
| Jamie Roger @JamieRoger8 RT @BarbyIngle: Top Influencers of #patientchat 9/21/2018 👉 @S4PM @patientchat @SalemOaks @hcldr @savvy_coop @K_SalemOaks @BarbyIngle @KenRayTaylor @power4patients @bbhomebody https://t.co/pa6lz85XHt via @symplur |
| Patient Empowerment Network @power4patients RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: The next Empowered #patientchat will be Friday, Oct 5th at 1pm ET | 10am PT https://t.co/nZ51Hy3wn6 Hope to see you there! |
#patientchat content from Twitter.