#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
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 @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 @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 RN @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 Casey Quinlan @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 @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 📣 @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
Becky Brandt RN @bbhomebody
@JamieRoger8 @Cpnervecenter @lisadbudzinski Hi @JamieRoger8 . I'm Hanging in there-Fall is pretty but painful. #patientlife #patientchat
Open Science @_open_science_
RT @MightyCasey: HI, ALL! Mighty Casey here, #bcsm + #openscience + #opendata + #healthpolicy firestarter. Attending remotely (and a bit ro…
z 🦜 @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: At the heart of it in the soc sci world, IRBs weigh the risk and benefits of research, aiming to protect patients from…
Kevin J. Fowler @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 Co-op | #askpatients @savvy_coop
RT @K_SalemOaks: T1 IRBs are in place to ensure human research is ethical. #patientchat @hcldr @s4pm @SalemOaks @Savvy_coop #ptexp #Right
Becky Brandt RN @bbhomebody
@JamieRoger8 @Cpnervecenter @lisadbudzinski I Hope your day is amazing! Someday I'd love to see the Northeast Fall- Its On my bucket list! #patientchat
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
ShereeseM, MS/MBA @ShereesePubHlth
Hello all; I'll be lurking while working today. #patientchat https://t.co/aeLcbisrQ5
Barby Ingle 📣 @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
International Pain Foundation® @powerofpain
RT @BarbyIngle: T1: The IRB has the responsibility of reviewing prior to starting all research involving humans. The IRB is concerned w pro…
Patient Chat @patientchat
Topic 2 (T2:) coming up...https://t.co/4dYAzaTGj3 #patientchat
Patient Chat @patientchat
RT @BarbyIngle: T1: The IRB has the responsibility of reviewing prior to starting all research involving humans. The IRB is concerned w pro…
Patient Chat @patientchat
Why is an Institutional Review Board (IRB) important? Tell us about your experiences, learnings, and findings. #patientchat https://t.co/CLml3X0q5o
Becky Brandt RN @bbhomebody
@abrewi3010 Hi Alan. 🖐 LOL I'm sitting back & learning more about T1 too! #patientchat
Jamie Roger @JamieRoger8
@ShereesePubHlth Fancy seeing you here. #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T1: The IRB has the responsibility of reviewing prior to starting all research involving humans. The IRB is concerned w pro…
Mighty Casey Quinlan @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 @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 @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 RN @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: #IRB is the firewall between research and patients, looking to ensure safety for trial participants and transparency o…
Kevin J. Fowler @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
Becky Brandt RN @bbhomebody
GREAT DESCRIPTION!!! @MightyCasey #patientchat
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
ShereeseM, MS/MBA @ShereesePubHlth
@bbhomebody #patientchat https://t.co/ee6Xr8SYd8
Barby Ingle 📣 @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
ShereeseM, MS/MBA @ShereesePubHlth
RT @davidcnorrismd: @gratefull080504 OTOH, if the term ‘subject’ makes us uneasy, this might be a good thing. We should always feel uneasy…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T2. The IRB is important because it keeps us safe while going through #clinicaltrials They set parameters as 2 what is ethi…
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T1: IRB adds a layer of protection when they approve disapprove and require modifications. Helping us feel more safe to p…
Kevin J. Fowler @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 Casey Quinlan @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® @powerofpain
RT @BarbyIngle: T2. The IRB is important because it keeps us safe while going through #clinicaltrials They set parameters as 2 what is ethi…
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T1: IRB adds a layer of protection when they approve disapprove and require modifications. Helping us feel more safe to p…
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 @davidcnorrismd
RT @K_SalemOaks: T2 IRBs are also hubs of experience with many clinical trials. This can lead to better application of accumulated knowled…
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
Becky Brandt RN @bbhomebody
@abrewi3010 @mayanorthen LOL! Life's just one big classroom isn't it! Hopefully some good info will sink in today 😀 #patientchat
Ken Taylor @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® @powerofpain
RT @KenRayTaylor: T2: Protection of the rights and welfare of human research subjects. Its important for us to feel like we are protected a…
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
#patientchat I'm MalkaBeth having recently moved 1100 miles from my old area I'm now looking around for a new medical team. I'm an activist.
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 Living Magazine @iPainFoundation
RT @KenRayTaylor: T2: Protection of the rights and welfare of human research subjects. Its important for us to feel like we are protected a…
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
Kevin Freiert @K_SalemOaks
No. Actually in the EU, the Ethics Committees are very similar to IRBs. Same function and purpose. #patientchat
Patient Chat @patientchat
RT @KenRayTaylor: T2: Protection of the rights and welfare of human research subjects. Its important for us to feel like we are protected a…
Claire @clairehsnyman
RT @KenRayTaylor: T1: IRB adds a layer of protection when they approve disapprove and require modifications. Helping us feel more safe to p…
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 slo…
Patient Empowerment @power4patients
RT @patientchat: 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 @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.…
Patient Empowerment @power4patients
RT @BarbyIngle: T2. The IRB is important because it keeps us safe while going through #clinicaltrials They set parameters as 2 what is ethi…
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
ShereeseM, MS/MBA @ShereesePubHlth
RT @davidcnorrismd: Surprisingly, perhaps, this ain’t ’necessarily’ so. In the particular case of phase 1 oncology dose-escalation designs,…
Becky Brandt RN @bbhomebody
T3 I suspect IRB's can dramatically slow the roll on many early innovations. And often send innovators back to square 1 or 2 to reassess things. #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 📣 @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 Casey Quinlan @MightyCasey
Current situation #patientchat https://t.co/RzsAPIYP9E
Patient Empowerment @power4patients
RT @patientchat: Why is an Institutional Review Board (IRB) important? Tell us about your experiences, learnings, and findings. #patientcha
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/4dYAzaTGj3 #patientchat https://t.co/rv5ZpLwhlY
ShereeseM, MS/MBA @ShereesePubHlth
RT @patientchat: Topic 4 (T4:) coming up...https://t.co/4dYAzaTGj3 #patientchat https://t.co/rv5ZpLwhlY
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T3 I think that IRB's can sometimes hurt innovation. I do know some providers who do "innovative treatments" vs research st…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T3 I think that IRB's can sometimes hurt innovation. I do know some providers who do "innovative treatments" vs research st…
Kevin J. Fowler @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 @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 @gratefull080504
@patientchat Do IRBs allow patients to be a participant in the design of IRBs? #patientchat
Mighty Casey Quinlan @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 @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…
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 📣 @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
ShereeseM, MS/MBA @ShereesePubHlth
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…
Mighty Casey Quinlan @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 Casey Quinlan @MightyCasey
@bbhomebody Hey, I'm a writer, occasionally I have words 🙃🙃 #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T4 #patientchat. Yes, so that the parameters of said studies can more accurately reflect what lives are like, in integrating treatment and the rest of life.
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 @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: Here's where my YMMV (your mileage may vary) warning comes in. #IRB, like any other oversight tribe, can become too en…
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 @davidcnorrismd
T4: #patientchat
Patient Chat @patientchat
#patientchat
Kevin J. Fowler @gratefull080504
IT4 think they should How do you initiate this process #patientchat
Mighty Casey Quinlan @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, MD, MPH @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 Casey Quinlan @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 Casey Quinlan @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 @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 @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 se…
Kevin J. Fowler @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: SPEAK UP to your clinical team! Your oncologist, your radiologist, your orthopedist, your endocrinologist, your rheuma…
Mighty Casey Quinlan @MightyCasey
Gawd I love tweet chatting with a gin in my hand 🤡🤡🙃🙃 #patientchat
International Pain Foundation® @powerofpain
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…
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T3: Sometimes being safe will keep needed information from coming to the surface. Progress can slow to the point of disco…
Patient Empowerment @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. Negrón @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 se…
Patient Chat @patientchat
@gratefull080504 Thanks for joining and sharing your thoughts Kevin! Have a good weekend! #patientchat
iPain Living Magazine @iPainFoundation
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…
J.B. Negrón @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…
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T3: Sometimes being safe will keep needed information from coming to the surface. Progress can slow to the point of disco…
J.B. Negrón @negronjb
RT @gratefull080504: @anetto : Excellent point I am unclear how the patient voice is utilized Are researchers speaking for patients or ar…
Patient Chat @patientchat
RT @K_SalemOaks: T5 Clearly we need to simply increase awareness and understanding of the IRB role, function, and authority. #patientchat
EUPATI_CH @EUPATI_CH
T5. Patients need skills to do this, w clear roles & responsibilities. Please share guidelines + tools you know of. #patientchat
Becky Brandt RN @bbhomebody
RT @K_SalemOaks: T5 Clearly we need to simply increase awareness and understanding of the IRB role, function, and authority. #patientchat
Ken Taylor @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 Living Magazine @iPainFoundation
RT @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…
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. #patient
Patient Empowerment @power4patients
RT @K_SalemOaks: T5 Clearly we need to simply increase awareness and understanding of the IRB role, function, and authority. #patientchat
International Pain Foundation® @powerofpain
RT @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…
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 @power4patients
@K_SalemOaks @beth_morton @hcldr @S4PM @SalemOaks @savvy_coop Sounds like a good opportunity to collaborate :) #patientchat
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @K_SalemOaks: T5 Clearly we need to simply increase awareness and understanding of the IRB role, function, and authority. #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: SPEAK UP to your clinical team! Your oncologist, your radiologist, your orthopedist, your endocrinologist, your rheuma…
Becky Brandt RN @bbhomebody
Thanks for the great info everyone! Gotta run-my new doggy needs a potty break. #patientchat https://t.co/Rv68ULQdM8
Patient Chat @patientchat
Final topic coming up...https://t.co/4dYAzaTGj3 #patientchat
Barby Ingle 📣 @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 Casey Quinlan @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® @powerofpain
RT @BarbyIngle: T5. Streamlining the IRB processes could help improve flexibility in the regulations. This could help reduce trial burdens,…
Trazy @TrazyPain
RT @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…
Patient Chat @patientchat
BONUS: Do you think that n-of-1 trials need IRB review? #patientchat https://t.co/GoVM85opls
Ken Taylor @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 Living Magazine @iPainFoundation
RT @BarbyIngle: T5. Streamlining the IRB processes could help improve flexibility in the regulations. This could help reduce trial burdens,…
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T5: A single IRB of record for multiple site studies could help provide more input for the success of the research. Also…
Mighty Casey Quinlan @MightyCasey
@power4patients I vas dere, Cholly. (Take to Google to get that one.) #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T5: A single IRB of record for multiple site studies could help provide more input for the success of the research. Also…
Mighty Casey Quinlan @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 📣 @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 @davidcnorrismd
RT @K_SalemOaks: BONUS Trick question? Isn't every visit to your physician an experiment? They create a hypothesis, offer treatment and w…
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 Casey Quinlan @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 @power4patients
RT @patientchat: 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 @davidcnorrismd
@K_SalemOaks @hcldr @S4PM @SalemOaks @savvy_coop This goes full circle back to our earlier discussion around ‘patient’ vs ‘subject’. #patientchat
Barby Ingle 📣 @BarbyIngle
CT: Everyone have an amazing weekend... and keep HOPE alive #PatientChat #ChronicPainAwarenessMonth #clinicaltrials #GenerationP
Ken Taylor @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: We'd love to see more tools, checklists, guidelines to help patients navigate this task. #patientchat
International Pain Foundation® @powerofpain
RT @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 prot…
International Pain Foundation® @powerofpain
RT @BarbyIngle: CT: Everyone have an amazing weekend... and keep HOPE alive #PatientChat #ChronicPainAwarenessMonth #clinicaltrials #Genera
Salem Oaks @SalemOaks
RT @power4patients: @K_SalemOaks @beth_morton @hcldr @S4PM @SalemOaks @savvy_coop Sounds like a good opportunity to collaborate :) #patient
International Pain Foundation® @powerofpain
RT @KenRayTaylor: Bonus: Depends largely on if the research can cause harm to the patient and how easy it is for the patient to understand…
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 Living Magazine @iPainFoundation
RT @KenRayTaylor: Bonus: Depends largely on if the research can cause harm to the patient and how easy it is for the patient to understand…
iPain Living Magazine @iPainFoundation
RT @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 prot…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: CT: Everyone have an amazing weekend... and keep HOPE alive #PatientChat #ChronicPainAwarenessMonth #clinicaltrials #Genera
Mighty Casey Quinlan @MightyCasey
@ePatientDave @SaraRiggare @corrie_painter DUDE,YOU DO! Just hit that GIF icon and PARTY. DOWN. #patientchat
Ken Taylor @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® @powerofpain
RT @KenRayTaylor: CT: Keep the research going and be safe! New discoveries are always needed. Have a great weekend. #patientchat https://t.…
Kevin Freiert @K_SalemOaks
CT: This was a very stimulating hour. Thanks everyone for the input and openness. Have a great weekend! #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: CT: Keep the research going and be safe! New discoveries are always needed. Have a great weekend. #patientchat https://t.…
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 @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 @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 📣 @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 @KenR
Patient Empowerment @power4patients
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Patient Empowerment @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.