4/28/2016 #JACR Healthcare Social Media Transcript http://embed.symplur.com/twitter/transcript?hashtag=JACR&fdate=04282016&shour=09&smin=00&tdate=04282016&thour=10&tmin=15 1/32 #JACR transcript Healthcare Social Media Transcript From: Thu Apr 28 9:00:00 PDT 2016 To: Thu Apr 28 10:15:00 PDT 2016 change time period What is #JACR? Who were the influencers during this time period? #JACR analytics Healthcare Conference Healthcare Tweet Chats Healthcare Analytics cibr_news RT @CIBR_Comm: On the @JACRJournal Patient Centered Care Tweet Chat @ Noon #JACR Want to hear how #patients can participate in developing i… Thu Apr 28 9:00:58 PDT 2016 ruthcarlosmd Welcome to #JACR tweet chat on increasing patient engagement. Thu Apr 28 9:02:09 PDT 2016 fsodagari Hi @JACRJournal , This is my first #JACR Tchat. Thu Apr 28 9:02:14 PDT 2016 cibr_news @ruthcarlosmd Glad to be here! #JACR Thu Apr 28 9:02:46 PDT 2016 pinkconcussions RT @ruthcarlosmd: Welcome to #JACR tweet chat on increasing patient engagement. Thu Apr 28 9:02:47 PDT 2016 ruthcarlosmd guest mod today @Jim_Rawson_MD chair of the new @RadiologyACR commission on patient and family centered care #JACR Thu Apr 28 9:02:56 PDT 2016 pfanderson RT @PinkConcussions: Join @PinkConcussions NOW for @JACRJournal Patient Centered Care Tweet Chat #JACR helping #patients have a voice in th… Thu Apr 28 9:03:01 PDT 2016 juliannaczummd @fsodagari So glad you can join us! @JACRJournal #JACR
Transcript
4/28/2016 #JACR Healthcare Social Media Transcript
cibr_news RT @CIBR_Comm: On the @JACRJournal Patient Centered Care Tweet Chat @Noon #JACR Want to hear how #patients can participate in developing i… Thu Apr 28 9:00:58 PDT 2016
ruthcarlosmd Welcome to #JACR tweet chat on increasing patient engagement. Thu Apr 28 9:02:09 PDT 2016
fsodagari Hi @JACRJournal, This is my first #JACR Tchat. Thu Apr 28 9:02:14 PDT 2016
cibr_news @ruthcarlosmd Glad to be here! #JACR Thu Apr 28 9:02:46 PDT 2016
pinkconcussions RT @ruthcarlosmd: Welcome to #JACR tweet chat on increasing patientengagement. Thu Apr 28 9:02:47 PDT 2016
ruthcarlosmd guest mod today @Jim_Rawson_MD chair of the new @RadiologyACR commissionon patient and family centered care #JACR Thu Apr 28 9:02:56 PDT 2016
pfanderson RT @PinkConcussions: Join @PinkConcussions NOW for @JACRJournal PatientCentered Care Tweet Chat #JACR helping #patients have a voice in th… Thu Apr 28 9:03:01 PDT 2016
juliannaczummd @fsodagari So glad you can join us! @JACRJournal #JACR
findlungcancer RT @ruthcarlosmd: guest mod today @Jim_Rawson_MD chair of the new@RadiologyACR commission on patient and family centered care #JACR Thu Apr 28 9:03:26 PDT 2016
pinkconcussions RT @ruthcarlosmd: guest mod today @Jim_Rawson_MD chair of the new@RadiologyACR commission on patient and family centered care #JACR Thu Apr 28 9:04:04 PDT 2016
pfanderson I can't say how delighted I am with the idea of increasing #patientengagement #ptexpin radiology! #s4pm @ePatientDave #JACR going on now Thu Apr 28 9:04:04 PDT 2016
ruthcarlosmd T1: How can patients participate in developing imaging trials? #jacr Thu Apr 28 9:05:09 PDT 2016
nxtstop1 NOW: #JACR chat on PatientCentered Care RE:Clinical Trial Recruitment,Yourwishes, Codesign,& Incl. Quality of Life as benchmark. Join us! Thu Apr 28 9:05:15 PDT 2016
ruthcarlosmd please introduce yourselves to our special guests: @jegail @stevenroberds@MelissaRVH, all patient advocates https://t.co/I0MXpaz5ej #JACR Thu Apr 28 9:05:22 PDT 2016
mightycasey Also, did you know that #patientsincluded has expanded to JOURNALS?https://t.co/HkE566923L #openscience #s4pm #jacr Thu Apr 28 9:07:35 PDT 2016
radsdoc82 Jonathan Flug, MSK radiologist out in Denver. Happy to be here. #JACR Thu Apr 28 9:07:42 PDT 2016
fsodagari I am Faezeh, Radiology research fellow @ Northwestern. Not a radiologist yet. But,have been a patient. #jacr Thu Apr 28 9:08:01 PDT 2016
cibr_comm @CIBR_Comm here, representing CIBR along with @CIBR_News &@CIBRPubPolicy all supporting the #JACR chat Thu Apr 28 9:08:04 PDT 2016
nxtstop1 Delighted to join the #JACR chat today on Patient Clinical Trial Recruitment (me:Bernadette Keefe MD Chapel Hill NC) Please Join Us~ Thu Apr 28 9:08:08 PDT 2016
jim_rawson_md Looking forward to a great discussion #JACR #PFCC Thu Apr 28 9:08:21 PDT 2016
juliannaczummd @ruthcarlosmd What would be the equivalent of upcoming #JACR hackathon, butinstead of app development, research protocol development? Thu Apr 28 9:08:45 PDT 2016
findlungcancer me too Gr8 to see U RT @MightyCasey: @findlungcancer <waving wildly> #jacr Thu Apr 28 9:08:57 PDT 2016
pfanderson RT @MightyCasey: Also, did you know that #patientsincluded has expanded toJOURNALS? https://t.co/HkE566923L #openscience #s4pm #jacr Thu Apr 28 9:09:00 PDT 2016
findlungcancer awesome RT @MightyCasey: did you know that #patientsincluded has expanded toJOURNALS? https://t.co/ySamdSniFP #openscience #s4pm #jacr Thu Apr 28 9:09:25 PDT 2016
tirathpatelmd RT @ruthcarlosmd: T1: How can patients participate in developing imaging trials?#jacr Thu Apr 28 9:09:36 PDT 2016
pfanderson Looks like a great crowd today! Patricia here from Michigan, medical librarian of manyhats #JACR Thu Apr 28 9:09:39 PDT 2016
fsodagari @ruthcarlosmd @jegail @stevenroberds @MelissaRVH Faezeh,a research fellow @Northwestern. Not a radiologist yet.Have been a patient. #jacr Thu Apr 28 9:09:39 PDT 2016
nxtstop1 RT @MightyCasey: Also, did you know that #patientsincluded has expanded toJOURNALS? https://t.co/HkE566923L #openscience #s4pm #jacr Thu Apr 28 9:10:16 PDT 2016
mightycasey @pfanderson <bows in general NNW direction> #jacr Thu Apr 28 9:10:19 PDT 2016
findlungcancer assemble patient team,get input via focus groups at start of design, review drafts,keep group engaged in full ashes to dust process #jacr Thu Apr 28 9:10:56 PDT 2016
mightycasey T1: Would love to hear from MDs/PhDs on where they NEED pt input on imagingscience ... #jacr Thu Apr 28 9:11:10 PDT 2016
findlungcancer T1 may need to provide compensation for patients to participate #jacr Thu Apr 28 9:11:23 PDT 2016
pfanderson Something #medlibs should be tracking. Thanks to @MightyCasey for sharing theinfo! #JACR https://t.co/nuun1WJdoA Thu Apr 28 9:11:24 PDT 2016
tirathpatelmd RT @findlungcancer: assemble patient team,get input via focus groups at start ofdesign, review drafts, keep group engaged in full ashes to… Thu Apr 28 9:11:37 PDT 2016
cibr_news @fsodagari @ruthcarlosmd @jegail @StevenRoberds @melissarvh Great point Ithink many #radiologists are also patients or caregivers #JACR Thu Apr 28 9:11:45 PDT 2016
stevenroberds Re T1: patient (or parent) input can guide protocol development: eg, time & frequencyof imaging procedures #jacr Thu Apr 28 9:11:48 PDT 2016
pfanderson @MightyCasey Made me snort through my nose. LOL! #jacr Thu Apr 28 9:11:49 PDT 2016
zaidirad RT @grebeccahaines: .@JACRJournal @RadiologyACR staff team here ready 2learn from #patients #JACR #PFCC Thu Apr 28 9:12:07 PDT 2016
pinkconcussions Katherine here from PINKconcussions female TBI @ruthcarlosmd@JuliannaCzumMD @StevenRoberds @melissarvh #JACRhttps://t.co/pHwUBN74ST Thu Apr 28 9:12:08 PDT 2016
tirathpatelmd RT @StevenRoberds: Re T1: patient (or parent) input can guide protocoldevelopment: eg, time & frequency of imaging procedures #jacr Thu Apr 28 9:12:22 PDT 2016
findlungcancer T1 patients need to be full team members, train on clinical trial process including IC,CITI training? #jacr Thu Apr 28 9:12:32 PDT 2016
grebeccahaines RT @MightyCasey: T1: Would love to hear from MDs/PhDs on where they NEED ptinput on imaging science ... #jacr Thu Apr 28 9:12:38 PDT 2016
tirathpatelmd RT @MightyCasey: Also, did you know that #patientsincluded has expanded toJOURNALS? https://t.co/HkE566923L #openscience #s4pm #jacr Thu Apr 28 9:12:40 PDT 2016
sumirpatelmd RT @StevenRoberds: Re T1: patient (or parent) input can guide protocoldevelopment: eg, time & frequency of imaging procedures #jacr Thu Apr 28 9:12:42 PDT 2016
mightycasey @pfanderson I'll keep doing it if you like remember, I'm #hcsm "Occupation Phool"when I'm not roaring with rage =) #jacr Thu Apr 28 9:13:06 PDT 2016
cibr_news RT @StevenRoberds: Re T1: patient (or parent) input can guide protocoldevelopment: eg, time & frequency of imaging procedures #jacr Thu Apr 28 9:13:11 PDT 2016
melissarvh T1 Patients can be proactive by increasing knowledge of trials & seeking to beactively involved; sharing info w/ patient communities. #jacr Thu Apr 28 9:13:21 PDT 2016
fsodagari T1 pts should know what a research can do for them. They don't know anything aboutour research and its direct effect on their lives. #jacr Thu Apr 28 9:13:29 PDT 2016
cibrpubpolicy #JACR the more educated the patient is the more empowered they are to engage intheir care educating them & empowered them is a shares one Thu Apr 28 9:13:32 PDT 2016
findlungcancer T1 patient input on informed consent document could make more readable & improverecruitment #jacr Thu Apr 28 9:13:33 PDT 2016
grebeccahaines Maybe ashes 2 dust process would b faster w #patients? 17 yrs 2 long 2 wait #jacrhttps://t.co/NWvvFS6yhn Thu Apr 28 9:14:02 PDT 2016
jim_rawson_md @MightyCasey T1 researchers need to know what is important to patients eg patientdefined outcomes #JACR Thu Apr 28 9:14:03 PDT 2016
mightycasey RT @findlungcancer: T1 patient input on informed consent could make morereadable & improve recruitment | viz: https://t.co/xsTE35bMAy #jacr Thu Apr 28 9:14:24 PDT 2016
findlungcancer RT @grebeccahaines: Maybe ashes 2 dust process would b faster w #patients? 17yrs 2 long 2 wait #jacr https://t.co/NWvvFS6yhn Thu Apr 28 9:14:32 PDT 2016
melissarvh T1 Patients can volunteer & share information about their illnesses, needs,expectations, desired outcomes, & burdens/obstacles. #jacr Thu Apr 28 9:14:33 PDT 2016
radiologyacr RT @CIBRPubPolicy: #JACR the more educated the patient is the more empoweredthey are to engage in their care educating them & empowered th… Thu Apr 28 9:14:37 PDT 2016
juliannaczummd #JACR T1: Can we create teams that incorporate patients to "burst innovate" at thetime of clinical trials protocol devmt? Thu Apr 28 9:14:45 PDT 2016
mightycasey Speaking of informedconsent protocol, new in JAMA: https://t.co/xsTE34UbbY(#openaccess) #jacr Thu Apr 28 9:14:51 PDT 2016
radiologyacr RT @fsodagari: T1 pts should know what a research can do for them. They don'tknow anything about our research and its direct effect on the… Thu Apr 28 9:14:56 PDT 2016
pfanderson @MightyCasey ROFL. Not necessary. I need to breathe. :) #jacr Thu Apr 28 9:14:58 PDT 2016
ruthcarlosmd T2: What is the role of patients and advocates in improving the care process? #JACR Thu Apr 28 9:15:11 PDT 2016
mightycasey RT @Jim_Rawson_MD: @MightyCasey T1 researchers need to know what isimportant to patients eg patient defined outcomes #JACR Thu Apr 28 9:15:20 PDT 2016
pinkconcussions T1 Concussion & TBI trials need to connect local medical providers within an hourdrive #JACR travel an issue for many Thu Apr 28 9:15:21 PDT 2016
stevenroberds T1 patients or parents should advise sponsor on acceptable risks, eg, sedation,radioactivity exposure, etc #JACR Thu Apr 28 9:15:22 PDT 2016
radsdoc82 t1 The “patient” needs to wear that hat alone and not a doc or other staff with “patientexperience.” Remove anecdotal experiences #JACR Thu Apr 28 9:15:32 PDT 2016
radiologyacr RT @melissarvh: T1 Patients can be proactive by increasing knowledge of trials &seeking to be actively involved; sharing info w/ patient c… Thu Apr 28 9:15:34 PDT 2016
zaidirad RT @grebeccahaines: Maybe ashes 2 dust process would b faster w #patients? 17yrs 2 long 2 wait #jacr https://t.co/NWvvFS6yhn Thu Apr 28 9:15:42 PDT 2016
pfanderson @findlungcancer I'd like to see variations of informed consent for different groups ofpatients. Let them choose which makes sense #JACR Thu Apr 28 9:15:56 PDT 2016
pfanderson RT @MightyCasey: Speaking of informedconsent protocol, new in JAMA:https://t.co/xsTE34UbbY (#openaccess) #jacr Thu Apr 28 9:16:03 PDT 2016
cibr_news @melissarvh How can we make that volunteer process easier on patients? #JACR Thu Apr 28 9:16:06 PDT 2016
grebeccahaines Let's put that in future research budget requests #JACR https://t.co/1t8SJFLyo4 Thu Apr 28 9:16:07 PDT 2016
mightycasey T2: ALL OF THE THINGS. IOW, if you don't ask people/patients what theywant/need/experience, HTF will shift happen? Asking for friend. #jacr Thu Apr 28 9:16:09 PDT 2016
tirathpatelmd RT @Radsdoc82: t1 The “patient” needs to wear that hat alone and not a doc or otherstaff with “patient experience.” Remove anecdotal exper… Thu Apr 28 9:16:31 PDT 2016
pfanderson @MightyCasey Informed consent is NOT a onesizefitsall process or concept#JACR Thu Apr 28 9:16:48 PDT 2016
jim_rawson_md T1#jacr @JuliannaCzumMD Shouldn't we include patients as part of clinical trialdevelopment teams? Researcher & patient defined outcomes Thu Apr 28 9:17:04 PDT 2016
grebeccahaines T2: @ center redesigning care #jacr Thu Apr 28 9:17:04 PDT 2016
ruthcarlosmd @MightyCasey ECOGACRIN stakeholder event w/ pts + MD/PhDs set researchpriorities in imaging. 5/13 in Boston https://t.co/FZO0jwzN2F #JACR Thu Apr 28 9:17:13 PDT 2016
stevenroberds T1 agree with @Radsdoc82 that patient groups/surveys are better guides thananecdotes, but anecdotes often start the conversation #JACR Thu Apr 28 9:17:14 PDT 2016
cibr_comm T1 Patients begin by knowing their perspective on conditions & outcomes is valuedby researchers & b empowered to share&get involved #jacr Thu Apr 28 9:17:32 PDT 2016
tirathpatelmd RT @Jim_Rawson_MD: T1#jacr @JuliannaCzumMD Shouldn't we include patientsas part of clinical trial development teams? Researcher & patient… Thu Apr 28 9:17:34 PDT 2016
findlungcancer need those different grps 2 help write MT @pfanderson: I'd like to see variations ofinformed consent 4 different groups of patients. #jacr Thu Apr 28 9:17:36 PDT 2016
pfanderson @Radsdoc82 Not sure what you mean by "remove anecdotal". Patients kind of liketheir anecdotes. Also, storytelling supports IC #JACR Thu Apr 28 9:17:36 PDT 2016
melissarvh @CIBR_News Patients often don't know how to get involved. Need info. Also, travel isoften an issue as well as time/hours involved. #jacr Thu Apr 28 9:17:36 PDT 2016
mightycasey T2: Current landscape = "build it, they will come" which is #fail 'cause people have noidea what/where "it" is. Let patients help. #jacr Thu Apr 28 9:17:41 PDT 2016
pinkconcussions T2 for brain injury patients and advocates, their key role is to share their experience toimprove future care for others #JACR Thu Apr 28 9:18:00 PDT 2016
findlungcancer RT @ruthcarlosmd: @MightyCasey ECOGACRIN stakeholder event w/ pts +MD/PhDs set research priorities in imaging. 5/13 in Boston https://t.c… Thu Apr 28 9:18:02 PDT 2016
mightycasey T2: all dx/tx protocol seems designed to lock out people/patient understanding andparticipation. Gotta address that in #science too. #jacr Thu Apr 28 9:18:20 PDT 2016
nxtstop1 T1 Just a point re:Clinical Trials:the absolute best way to have superb outcomes, highrecruitment, etc is >CODesign< them. #patients #jacr Thu Apr 28 9:18:33 PDT 2016
jim_rawson_md T1#jacr @findlungcancer Good thought. Big impact, low cost & replicable in multipleenvironments. Thu Apr 28 9:18:38 PDT 2016
sumirpatelmd T2: Have numerous patients detail their experience of the care process. Amalgamatedata and find common themes to fix #JACR Thu Apr 28 9:18:46 PDT 2016
melissarvh T2 Researchers should ask patients about desired outcomes & goals; seek input rewhat we find burdensome & what we see as progress. #jacr Thu Apr 28 9:18:47 PDT 2016
findlungcancer I'll be there @ruthcarlosmd @MightyCasey #jacr Thu Apr 28 9:18:52 PDT 2016
mightycasey RT @ruthcarlosmd: @MightyCasey ECOGACRIN stakeholder event w/ pts +MD/PhDs set research priorities in imaging. 5/13 in Boston https://t.c… Thu Apr 28 9:18:53 PDT 2016
pfanderson @findlungcancer Need to invite variety of patients to teams testing consent / outreach/ #healthliteracy options. #JACR Thu Apr 28 9:18:59 PDT 2016
kristinahoque Sorry to be joining late USC #radres here #JACR Thu Apr 28 9:19:00 PDT 2016
pfanderson RT @ruthcarlosmd: @MightyCasey ECOGACRIN stakeholder event w/ pts +MD/PhDs set research priorities in imaging. 5/13 in Boston https://t.c… Thu Apr 28 9:19:10 PDT 2016
grebeccahaines Hey @PCORI Gr8 tchat going on now #jacr re #patients & #research@Jim_Rawson_MD moderating Thu Apr 28 9:19:10 PDT 2016
mlsfleming2 RT @nxtstop1: T1 Just a point re:Clinical Trials:the absolute best way to have superboutcomes, high recruitment, etc is >CODesign< them.… Thu Apr 28 9:19:22 PDT 2016
points for improving process #JACR Thu Apr 28 9:19:29 PDT 2016
pfanderson RT @SumirPatelMD: T2: Have numerous patients detail their experience of the careprocess. Amalgamate data and find common themes to fix #JA… Thu Apr 28 9:19:35 PDT 2016
grebeccahaines RT @melissarvh: @CIBR_News Patients often don't know how to get involved. Needinfo. Also, travel is often an issue as well as time/hours i… Thu Apr 28 9:19:40 PDT 2016
pfanderson RT @melissarvh: T2 Researchers should ask patients about desired outcomes &goals; seek input re what we find burdensome & what we see as p… Thu Apr 28 9:19:43 PDT 2016
nxtstop1 T1, T2,....and by CODesign, thats from the ground up: the whys and the wherefors,goals, outcomes, data transparency, compensation #jacr Thu Apr 28 9:19:51 PDT 2016
mightycasey @pfanderson Read the article, says informed consent is #fail w/out shared decisionmaking. #jacr Thu Apr 28 9:19:59 PDT 2016
findlungcancer clinician view of burdensome VERY different from patient view @melissarvh same 4bothersome = not deadly to clinician #jacr Thu Apr 28 9:20:10 PDT 2016
kristinahoque I've found that having a high degree of cultural sensitivity allows for better recruitmentand retention. Stay ptcentered! #JACR Thu Apr 28 9:20:24 PDT 2016
grebeccahaines If it's important we should figure out how 2 pay 4 it. ROI is obvious #JACRhttps://t.co/kiOcuGFT3N Thu Apr 28 9:20:30 PDT 2016
juliannaczummd @ruthcarlosmd T2: Defining what "care" truly means to different people at differenttimes in different contexts. #JACR Thu Apr 28 9:20:46 PDT 2016
ruthcarlosmd @MightyCasey need informed consent for imaging care tootest false positive rate,radiation dose vs benefit, alternative testing. #JACR Thu Apr 28 9:20:46 PDT 2016
fsodagari T2: Radiologists should TALK to the patients. Most research studies do not need extratravel or tests. Just needs a direct dialogue #jacr Thu Apr 28 9:20:47 PDT 2016
mightycasey RT @findlungcancer: clinician view of burdensome VERY different fm patient view@melissarvh same 4 bothersome = not deadly 2 clinician #jacr Thu Apr 28 9:21:10 PDT 2016
sumirpatelmd RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:21:14 PDT 2016
nxtstop1 RT @JuliannaCzumMD: #JACR T1: Can we create teams that incorporate patients to"burst innovate" at the time of clinical trials protocol d… Thu Apr 28 9:21:17 PDT 2016
pfanderson Nice seeing these two side by side @melissarvh @SumirPatelMD #JACRhttps://t.co/BSdCuSF0Oz Thu Apr 28 9:21:20 PDT 2016
grebeccahaines RT @KristinaHoque: I've found that having a high degree of cultural sensitivity allowsfor better recruitment and retention. Stay ptcenter… Thu Apr 28 9:21:28 PDT 2016
findlungcancer need to provide different levels/options for involvement @melissarvh @CIBR_Newsnot all patients want to be involved the same way #jacr Thu Apr 28 9:21:35 PDT 2016
radiologyacr RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:21:36 PDT 2016
mightycasey RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:21:40 PDT 2016
kristinahoque RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:21:45 PDT 2016
pfanderson @MightyCasey Of course it is. #JACR Thu Apr 28 9:21:52 PDT 2016
findlungcancer RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:22:03 PDT 2016
sumirpatelmd RT @melissarvh: T2 Researchers should ask patients about desired outcomes &goals; seek input re what we find burdensome & what we see as p… Thu Apr 28 9:22:07 PDT 2016
juliannaczummd @grebeccahaines Good point Becky. Clinical trials should budget for that. #JACR Thu Apr 28 9:22:09 PDT 2016
pinkconcussions T2: It can intimidating for a patient to share feedback & her experience with medicalproviders who may be currently saving her life #JACR Thu Apr 28 9:22:21 PDT 2016
pfanderson RT @ruthcarlosmd: @MightyCasey need informed consent for imaging care tootestfalse positive rate, radiation dose vs benefit, alternative… Thu Apr 28 9:22:26 PDT 2016
melissarvh T2 Patients must be open to discussing objections, recommending changes reprocedures. #jacr Thu Apr 28 9:22:33 PDT 2016
mightycasey @ruthcarlosmd I repeat: SHARED DECSIONMAKING, not informed consent. #SDMneeds to be new rule. https://t.co/xsTE34UbbY #JACR Thu Apr 28 9:22:40 PDT 2016
findlungcancer RT @MightyCasey: @ruthcarlosmd I repeat: SHARED DECSIONMAKING, notinformed consent. #SDM needs to be new rule. https://t.co/xsTE34UbbY #J… Thu Apr 28 9:23:13 PDT 2016
sumirpatelmd RT @MightyCasey: @ruthcarlosmd I repeat: SHARED DECSIONMAKING, notinformed consent. #SDM needs to be new rule. https://t.co/xsTE34UbbY #J… Thu Apr 28 9:23:26 PDT 2016
cibr_news Great point. Patients need to know they have the option for being involved in differentways #JACR https://t.co/9VpWGN4gcP Thu Apr 28 9:23:28 PDT 2016
ruthcarlosmd @MightyCasey eg. pt have hard time understanding state mandated dense breastreport https://t.co/HSfhto1spA ask pts help draft report. #JACR Thu Apr 28 9:23:31 PDT 2016
grebeccahaines RT @MightyCasey: @ruthcarlosmd I repeat: SHARED DECSIONMAKING, notinformed consent. #SDM needs to be new rule. https://t.co/xsTE34UbbY #J… Thu Apr 28 9:23:33 PDT 2016
melissarvh RT @findlungcancer: need to provide different levels/options for involvement@melissarvh @CIBR_News not all patients want to be involved th… Thu Apr 28 9:23:43 PDT 2016
kristinahoque Agree! We must create an environment where patients can ask questions andcontribute! #JACR Thu Apr 28 9:23:47 PDT 2016
melissarvh RT @pfanderson: Nice seeing these two side by side @melissarvh @SumirPatelMD#JACR https://t.co/BSdCuSF0Oz Thu Apr 28 9:23:53 PDT 2016
stevenroberds Agree @ruthcarlosmd without stories/anecdotes we don't know where to start, butthen get input from lots of patients #JACR Thu Apr 28 9:23:54 PDT 2016
pfanderson @melissarvh Some can do this. Some can't. All of us have times when we can't. HCsystem also needs supports, flexibility #JACR Thu Apr 28 9:23:58 PDT 2016
findlungcancer need 2make sure shared decision making includes decision aids w/ balancedinformation on risks & benefits @MightyCasey @ruthcarlosmd #jacr Thu Apr 28 9:24:12 PDT 2016
pfanderson RT @ruthcarlosmd: @MightyCasey eg. pt have hard time understanding statemandated dense breast report https://t.co/HSfhto1spA ask pts help… Thu Apr 28 9:24:15 PDT 2016
drgmcginty RT @MightyCasey: @ruthcarlosmd I repeat: SHARED DECSIONMAKING, notinformed consent. #SDM needs to be new rule. https://t.co/xsTE34UbbY #J… Thu Apr 28 9:24:17 PDT 2016
pfanderson RT @MightyCasey: @ruthcarlosmd I repeat: SHARED DECSIONMAKING, notinformed consent. #SDM needs to be new rule. https://t.co/xsTE34UbbY #J… Thu Apr 28 9:24:25 PDT 2016
cibr_news T2 @PinkConcussions good point. How can radiologists make this easier? #JACR Thu Apr 28 9:24:25 PDT 2016
stevenroberds RT @findlungcancer: need to provide different levels/options for involvement@melissarvh @CIBR_News not all patients want to be involved th… Thu Apr 28 9:24:27 PDT 2016
mightycasey RT @findlungcancer: need 2make sure shared decision making includes decisionaids w/ balanced information on risks & benefits @MightyCasey… Thu Apr 28 9:24:29 PDT 2016
nxtstop1 RT @findlungcancer: need 2make sure shared decision making includes decisionaids w/ balanced information on risks & benefits @MightyCasey… Thu Apr 28 9:24:56 PDT 2016
pfanderson @MightyCasey @ruthcarlosmd The emphasis on both parts is getting information in away patients can understand. #JACR Thu Apr 28 9:24:56 PDT 2016
jim_rawson_md T2 #jacr different people want different outcomes in diff ways. Need to be able to havepartnershippt, doc, family https://t.co/9eKMlNpUoN Thu Apr 28 9:25:16 PDT 2016
rogerengmd RT @KristinaHoque: Agree! We must create an environment where patients can askquestions and contribute! #JACR Thu Apr 28 9:25:20 PDT 2016
mlsfleming2 RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:25:20 PDT 2016
findlungcancer need to B considered full team members MT @KristinaHoque: We must createenvironment where patients can ask questions and contribute! #jacr Thu Apr 28 9:25:23 PDT 2016
mightycasey RT @pfanderson: @MightyCasey @ruthcarlosmd The emphasis on both parts isgetting information in a way patients can understand. #JACR Thu Apr 28 9:25:30 PDT 2016
jmhug T1: Remember not all patients are the same. Use multiple orgs & channels to promoteengagement in trials. Give a full seat @ table. #JACR Thu Apr 28 9:25:34 PDT 2016
mightycasey RT @findlungcancer: need to B considered full team members MT @KristinaHoque:We must create environment where patients can ask questions a… Thu Apr 28 9:25:39 PDT 2016
portogm RT @CIBRPubPolicy: #JACR the more educated the patient is the more empoweredthey are to engage in their care educating them & empowered th… Thu Apr 28 9:25:39 PDT 2016
pfanderson @MightyCasey @ruthcarlosmd I'm part of a project here to make patient comics forhigh risk / high need info. Wrap info in story #JACR Thu Apr 28 9:25:39 PDT 2016
pinkconcussions T2 speaking of... I still have not shared w/the radiology Dept my terrible experiencew/my breast cancer diagnosis #JACR 3 years later Thu Apr 28 9:25:49 PDT 2016
mightycasey RT @JMHug: T1: Remember not all patients are the same. Use multiple orgs &channels to promote engagement in trials. Give a full seat @ tab… Thu Apr 28 9:25:49 PDT 2016
findlungcancer can't have comments from docs/researchers that devalue patient input/contribution(straight jacket of patient involvement) #jacr Thu Apr 28 9:26:16 PDT 2016
mlsfleming2 RT @MightyCasey: RT @findlungcancer: clinician view of burdensome VERYdifferent fm patient view @melissarvh same 4 bothersome = not deadly… Thu Apr 28 9:26:24 PDT 2016
melissarvh T2 As advocate, make needs of community known 2 medical professionals,researchers, policy makers. Speak up 4 self & others re needs. #jacr Thu Apr 28 9:26:26 PDT 2016
sumirpatelmd RT @pfanderson: @MightyCasey @ruthcarlosmd I'm part of a project here to makepatient comics for high risk / high need info. Wrap info in s…
pfanderson Even the brightest patients have times when they are shocky, can't grasp info. Othertimes lowliteracy content obscures what ppl need #JACR Thu Apr 28 9:27:04 PDT 2016
mightycasey Uniformly, across medicine, #meded needs to add more robust COMMUNICATIONskillbuilding into syllabus, stop baking humanity out. #jacr Thu Apr 28 9:27:04 PDT 2016
kristinahoque @pfanderson sometimes the simple factor of speaking a different language can be abig hurdle how to get past this effectively? #JACR Thu Apr 28 9:27:04 PDT 2016
pfanderson RT @JMHug: T1: Remember not all patients are the same. Use multiple orgs &channels to promote engagement in trials. Give a full seat @ tab… Thu Apr 28 9:27:10 PDT 2016
sumirpatelmd @pfanderson @MightyCasey @ruthcarlosmd Love this idea! #JACR Thu Apr 28 9:27:13 PDT 2016
melissarvh RT @JMHug: T1: Remember not all patients are the same. Use multiple orgs &channels to promote engagement in trials. Give a full seat @ tab… Thu Apr 28 9:27:28 PDT 2016
nxtstop1 @PinkConcussions T2 I wish there were a way for you to do this..... it sounds like it leftan indelible (negative) imprint, so sorry:( #jacr Thu Apr 28 9:27:30 PDT 2016
cibr_news RT @JMHug: T1: Remember not all patients are the same. Use multiple orgs &channels to promote engagement in trials. Give a full seat @ tab… Thu Apr 28 9:27:30 PDT 2016
grebeccahaines Need to train researchers as well as patients @findlungcancer #jacr Thu Apr 28 9:27:41 PDT 2016
findlungcancer T2 full team members, expected to participate in care and provide feedback in anenvironment of mutual respect #jacr Thu Apr 28 9:27:44 PDT 2016
radiologyacr RT @KristinaHoque: @pfanderson sometimes the simple factor of speaking adifferent language can be a big hurdle how to get past this effec… Thu Apr 28 9:27:50 PDT 2016
fsodagari T2: a sample study on how to increase participation in research.https://t.co/yLqD1GexjR #jacr Thu Apr 28 9:27:52 PDT 2016
findlungcancer RT @MightyCasey: Uniformly, across medicine, #meded needs to add more robustCOMMUNICATION skillbuilding into syllabus, stop baking humani… Thu Apr 28 9:28:06 PDT 2016
mightycasey @pfanderson @ruthcarlosmd AWESOME!! Love the comic communication protocol,which is "ever'body gets this" #jacr Thu Apr 28 9:28:08 PDT 2016
nxtstop1 @KristinaHoque @pfanderson T2 Instead of fancy accoutrements & artwork, waterfountains, hospitals must hire more translators #scicomm #jacr Thu Apr 28 9:28:42 PDT 2016
pinkconcussions I use cartoons to do all my education on concussion and brain injury @pfanderson@MightyCasey @ruthcarlosmd #JACR Thu Apr 28 9:28:45 PDT 2016
pinkconcussions RT @pfanderson: @MightyCasey @ruthcarlosmd I'm part of a project here to makepatient comics for high risk / high need info. Wrap info in s… Thu Apr 28 9:28:53 PDT 2016
pfanderson @MightyCasey @ruthcarlosmd @SumirPatelMD Also, making comics B/W colorable,handson for more engagement/retention #JACR Thu Apr 28 9:29:10 PDT 2016
pfanderson @KristinaHoque That's where visual and media literacies come into play, yes? And,of course, translators. #JACR Thu Apr 28 9:29:40 PDT 2016
pfanderson RT @nxtstop1: @KristinaHoque @pfanderson T2 Instead of fancy accoutrements &artwork, water fountains, hospitals must hire more translators… Thu Apr 28 9:29:51 PDT 2016
pfanderson RT @PinkConcussions: I use cartoons to do all my education on concussion andbrain injury @pfanderson @MightyCasey @ruthcarlosmd #JACR Thu Apr 28 9:29:57 PDT 2016
findlungcancer T2 The rule, if the patient does not understand it is NOT the patient's fault the patientdoes not FAIL treatment #jacr Thu Apr 28 9:30:13 PDT 2016
ruthcarlosmd T3: What are the barriers to patient and advocate participation in designing trials andcare processes? #JACR Thu Apr 28 9:30:20 PDT 2016
juliannaczummd @findlungcancer We at @DartmouthHitch R lucky 2 have Center 4 SDM. Many othersdon't. How do they get started? #JACR https://t.co/te8zKSX1ef Thu Apr 28 9:30:20 PDT 2016
cibr_comm @pfanderson @PinkConcussions great to hear such interesting ideas on usingcreative content to educate and engage patients. #jacr Thu Apr 28 9:30:22 PDT 2016
pfanderson @PinkConcussions @MightyCasey @ruthcarlosmd Local lawyer doing the same forpolicy education around midwifery issues #JACR Thu Apr 28 9:30:23 PDT 2016
pfanderson RT @CIBR_Comm: @pfanderson @PinkConcussions great to hear such interestingideas on using creative content to educate and engage patients.… Thu Apr 28 9:30:33 PDT 2016
jim_rawson_md T1#jacr Our patients worked w our radiologists to design our Mammography lettershttps://t.co/To2Ydee3nV Thu Apr 28 9:30:46 PDT 2016
kristinahoque @pfanderson #JACR translators are great but we need to be careful that empathyand cultural nuances do not become lost in translation. Thu Apr 28 9:30:55 PDT 2016
findlungcancer T3 many researchers don't value patient input huge barrier #jacr Thu Apr 28 9:31:10 PDT 2016
nxtstop1 T2 Issue of simple literacy a barrier. Cancer can be a lifestyle disease>>theunderserved population at risk...have worst schools. #jacr Thu Apr 28 9:31:40 PDT 2016
pfanderson @KristinaHoque I know. It's so hard. And there are also personality differences intranslation just as in other types of communication #JACR Thu Apr 28 9:31:46 PDT 2016
mightycasey Hey @pfanderson I can't draw, but I can use tools #JACR https://t.co/fRDpT6H2R8 Thu Apr 28 9:31:52 PDT 2016
melissarvh T3 Lack of knowledge re opportunities 4 participation. Need researchers 2 seekpatient input & actively promote opportunities. #jacr Thu Apr 28 9:31:53 PDT 2016
findlungcancer T3 need to remember all us will be patients and we bring the expertise of our normallives to that experience #jacr Thu Apr 28 9:31:54 PDT 2016
zaidirad RT @grebeccahaines: If it's important we should figure out how 2 pay 4 it. ROI isobvious #JACR https://t.co/kiOcuGFT3N Thu Apr 28 9:32:01 PDT 2016
pinkconcussions T2 Radiologists saw cancer clearly but no doctor in the office to tell me @nxtstop1sent me home w/report w sad, worried faces on NYE #JACR Thu Apr 28 9:32:09 PDT 2016
cibr_news RT @findlungcancer: T3 need to remember all us will be patients and we bring theexpertise of our normal lives to that experience #jacr Thu Apr 28 9:32:12 PDT 2016
zaidirad RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:32:14 PDT 2016
mightycasey RT @PinkConcussions: I use cartoons to do all my education on concussion andbrain injury @pfanderson @MightyCasey @ruthcarlosmd #JACR Thu Apr 28 9:32:16 PDT 2016
findlungcancer RT @grebeccahaines: If it's important we should figure out how 2 pay 4 it. ROI isobvious #JACR https://t.co/kiOcuGFT3N Thu Apr 28 9:32:17 PDT 2016
stevenroberds Re T3 sponsors often feel patient engagement may slow the process, but it should bedone in parallel with medical KOLs #JACR Thu Apr 28 9:32:22 PDT 2016
melissarvh T3 Possible barriers burdensome travel requirements, costs, fear of treatment sideeffects or of having to stop current meds. #jacr Thu Apr 28 9:32:23 PDT 2016
pfanderson RT @MightyCasey: Hey @pfanderson I can't draw, but I can use tools #JACRhttps://t.co/fRDpT6H2R8 Thu Apr 28 9:32:33 PDT 2016
jmhug T2: Mutual respect is essential from all involved in care process. It's easy to complain.Pt role = respectfully suggest solutions. #JACR Thu Apr 28 9:32:41 PDT 2016
findlungcancer RT @melissarvh: T3 Possible barriers burdensome travel requirements, costs, fearof treatment sideeffects or of having to stop current m… Thu Apr 28 9:32:46 PDT 2016
sumirpatelmd T3: Many patients may not know that they can be so involved. How about asking themto participate in design during routine visits? #JACR Thu Apr 28 9:32:47 PDT 2016
juliannaczummd @Jim_Rawson_MD Fantastic! Would love 4 U to share what the process andoutcome was in #JACR article or blogpost. Thu Apr 28 9:32:48 PDT 2016
melissarvh T3 Accept patients as central in process, as genuine collaborators; truly considerrecommendations & concerns. Don’t assume you know. #jacr Thu Apr 28 9:33:02 PDT 2016
pfanderson @MightyCasey AWESOME!!! I'm using Second Life to "draw" my web comichttps://t.co/Dbu8CbbZls (sorely behind cuz of personal crises) #JACR Thu Apr 28 9:33:12 PDT 2016
findlungcancer RT @melissarvh: T3 Accept patients as central in process, as genuine collaborators;truly consider recommendations & concerns. Don’t assume… Thu Apr 28 9:33:14 PDT 2016
pfanderson RT @JMHug: T2: Mutual respect is essential from all involved in care process. It'seasy to complain. Pt role = respectfully suggest solutio… Thu Apr 28 9:33:29 PDT 2016
pfanderson RT @SumirPatelMD: T3: Many patients may not know that they can be so involved.How about asking them to participate in design during routin… Thu Apr 28 9:33:34 PDT 2016
iamokaynow RT @CIBRPubPolicy: #JACR the more educated the patient is the more empoweredthey are to engage in their care educating them & empowered th… Thu Apr 28 9:33:34 PDT 2016
fsodagari T3 docs: lack of fund, difficult coordination, IRB process, team inefficiency pts: lack ofknowledge, fear of risks, no motivation #jacr Thu Apr 28 9:33:40 PDT 2016
jenny_writer RT @SumirPatelMD: T3: Many patients may not know that they can be so involved.How about asking them to participate in design during routin… Thu Apr 28 9:33:47 PDT 2016
jim_rawson_md T3 #JACR Need to fund patient time, travel etc to participate in design of trials andinclude structure to make room for patients in design Thu Apr 28 9:34:06 PDT 2016
nxtstop1 @PinkConcussions @nxtstop1 Meaning your own doctor(non radiologist) notavailable or radiologist?? Was it an out pt screening center? #jacr Thu Apr 28 9:34:14 PDT 2016
melissarvh RT @Jim_Rawson_MD: T3 #JACR Need to fund patient time, travel etc to participatein design of trials and include structure to make room for… Thu Apr 28 9:34:22 PDT 2016
mightycasey RT @pfanderson: @MightyCasey AWESOME!!! I'm using Second Life to "draw" myweb comic https://t.co/Dbu8CbbZls (sorely behind cuz of personal… Thu Apr 28 9:34:33 PDT 2016
pfanderson @SumirPatelMD YES! Often patients feel pushed to be silent, see docs roll eyeswhen they ask ?s. All patients CAN contribute value #JACR Thu Apr 28 9:34:40 PDT 2016
nxtstop1 RT @JuliannaCzumMD: @findlungcancer We at @DartmouthHitch R lucky 2 haveCenter 4 SDM. Many others don't. How do they get started? #JACR ht… Thu Apr 28 9:34:41 PDT 2016
iamokaynow RT @melissarvh: T2 As advocate, make needs of community known 2 medicalprofessionals, researchers, policy makers. Speak up 4 self & others… Thu Apr 28 9:34:52 PDT 2016
nxtstop1 RT @findlungcancer: T3 need to remember all us will be patients and we bring theexpertise of our normal lives to that experience #jacr Thu Apr 28 9:35:23 PDT 2016
findlungcancer provider education is key for shared decision making @melissarvh many cliniciansdon't know how/uncomfortable with SDM #jacr Thu Apr 28 9:35:38 PDT 2016
tirathpatelmd @JuliannaCzumMD @Jim_Rawson_MD that's great! Difficulty is that some statesmandate specific language verbatim in the letter. #JACR Thu Apr 28 9:35:40 PDT 2016
jim_rawson_md RT @melissarvh: T3 Accept patients as central in process, as genuine collaborators;truly consider recommendations & concerns. Don’t assume… Thu Apr 28 9:35:44 PDT 2016
iamokaynow RT @JMHug: T1: Remember not all patients are the same. Use multiple orgs &channels to promote engagement in trials. Give a full seat @ tab… Thu Apr 28 9:35:52 PDT 2016
pfanderson RT @melissarvh: T3 Possible barriers burdensome travel requirements, costs, fearof treatment sideeffects or of having to stop current m… Thu Apr 28 9:35:55 PDT 2016
pfanderson RT @PinkConcussions: T2 Radiologists saw cancer clearly but no doctor in the officeto tell me @nxtstop1 sent me home w/report w sad, worri… Thu Apr 28 9:36:05 PDT 2016
cibr_news This is essential, fit into existing visit rather than requiring another appointment andadding to burden #JACR https://t.co/Ue1TKMaQHg Thu Apr 28 9:36:16 PDT 2016
melissarvh @Jim_Rawson_MD Also more than costs many are too sick to travel & find it highlyinconvenient. Schedule a factor @ times of illness. #jacr Thu Apr 28 9:36:16 PDT 2016
pinkconcussions T2 Awesome cartoon that I have lived with breast cancer @MightyCasey@pfanderson #JACR Thu Apr 28 9:36:16 PDT 2016
pinkconcussions RT @MightyCasey: Hey @pfanderson I can't draw, but I can use tools #JACRhttps://t.co/fRDpT6H2R8 Thu Apr 28 9:36:20 PDT 2016
radiologyacr RT @JMHug: T2: Mutual respect is essential from all involved in care process. It'seasy to complain. Pt role = respectfully suggest solutio… Thu Apr 28 9:36:24 PDT 2016
nxtstop1 RT @ruthcarlosmd: T3: What are the barriers to patient and advocate participation indesigning trials and care processes? #JACR Thu Apr 28 9:36:25 PDT 2016
tirathpatelmd RT @SumirPatelMD: T3: Many patients may not know that they can be so involved.How about asking them to participate in design during routin… Thu Apr 28 9:36:29 PDT 2016
tirathpatelmd RT @KristinaHoque: @pfanderson #JACR translators are great but we need to becareful that empathy and cultural nuances do not become lost i… Thu Apr 28 9:36:39 PDT 2016
cibrpubpolicy RT @findlungcancer: provider education is key for shared decision making@melissarvh many clinicians don't know how/uncomfortable with SDM… Thu Apr 28 9:36:42 PDT 2016
melissarvh RT @findlungcancer: provider education is key for shared decision making@melissarvh many clinicians don't know how/uncomfortable with SDM… Thu Apr 28 9:36:48 PDT 2016
cibrpubpolicy RT @TirathPatelMD: @JuliannaCzumMD @Jim_Rawson_MD that's great! Difficulty isthat some states mandate specific language verbatim in the le… Thu Apr 28 9:36:51 PDT 2016
jmhug T3: Awareness (by pt population) is a barrier. Also, try to avoid too many assumptionson behalf of pt. Engage early not afterthought #JACR Thu Apr 28 9:36:58 PDT 2016
jim_rawson_md T3 #jacr Hard to put the patient in the center of healthcare if we (docs) are standingthere ourselves #ptexp #PFCC Thu Apr 28 9:37:02 PDT 2016
findlungcancer RT @Jim_Rawson_MD: T3 #jacr Hard to put the patient in the center of healthcare ifwe (docs) are standing there ourselves #ptexp #PFCC Thu Apr 28 9:37:19 PDT 2016
cibr_news RT @melissarvh: @Jim_Rawson_MD Also more than costs many are too sick totravel & find it highly inconvenient. Schedule a factor @ times… Thu Apr 28 9:37:20 PDT 2016
juliannaczummd T3: How to incent clinical trials researchers to recruit & budget for patient teammembers? Should it be required for funding? #JACR Thu Apr 28 9:37:34 PDT 2016
stevenroberds Agreed @findlungcancer patients will participate in trial design if asked andrespected #JACR https://t.co/1c8gDFR5DO Thu Apr 28 9:37:35 PDT 2016
radiologyacr RT @Jim_Rawson_MD: T3 #jacr Hard to put the patient in the center of healthcare ifwe (docs) are standing there ourselves #ptexp #PFCC Thu Apr 28 9:38:11 PDT 2016
findlungcancer @culture change reqd for patient centered care Jim_Rawson_MD #1 is respect &value patient, not happening today #jacr Thu Apr 28 9:38:13 PDT 2016
jmhug @TirathPatelMD @JuliannaCzumMD @Jim_Rawson_MD Perhaps identify work withpolicy maker / regulators in states to improve language. #JACR Thu Apr 28 9:38:17 PDT 2016
juliannaczummd @CancerGeek You are missing #JACR tweetchat! Thu Apr 28 9:38:24 PDT 2016
tirathpatelmd RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 9:38:30 PDT 2016
mikeissatyson1 https://t.co/LDdL8w8gbU #PrayForUGA #BWTRC #NationalSuperheroDay#DearPeyton #JACR Match Game #RaceAndGunViolence #FelizJueves Thu Apr 28 9:38:30 PDT 2016
melissarvh T3 Tests themselves burdensome to some. Ex: Barium swallow for those w/#gastroparesis. Ever try to keep that down w/ nausea? #jacr Thu Apr 28 9:38:32 PDT 2016
mightycasey Boy howdy! => RT @Jim_Rawson_MD: T3 #jacr Hard to put patient in center ofhealthcare if we (docs) are standing there ourselves #ptexp #PFCC Thu Apr 28 9:38:37 PDT 2016
mightycasey RT @melissarvh: T3 Tests themselves burdensome to some. Ex: Barium swallow forthose w/ #gastroparesis. Ever try to keep that down w/ nause… Thu Apr 28 9:38:45 PDT 2016
grebeccahaines RT @JMHug: T3: Awareness (by pt population) is a barrier. Also, try to avoid toomany assumptions on behalf of pt. Engage early not afterth… Thu Apr 28 9:38:57 PDT 2016
tirathpatelmd RT @Jim_Rawson_MD: T3 #jacr Hard to put the patient in the center of healthcare ifwe (docs) are standing there ourselves #ptexp #PFCC Thu Apr 28 9:39:02 PDT 2016
lfordunc I agree. Talking directly can be effective and efficient #jacr https://t.co/sXKh0QuO5n Thu Apr 28 9:39:18 PDT 2016
pfanderson @Norm_Thomson_MD @SumirPatelMD We like to feel that we can also help others.Our lessons have purpose & meaning if they help #JACR Thu Apr 28 9:39:28 PDT 2016
cibrpubpolicy RT @JMHug: @TirathPatelMD @JuliannaCzumMD @Jim_Rawson_MD Perhapsidentify work with policy maker / regulators in states to improve langua… Thu Apr 28 9:39:41 PDT 2016
RT @MightyCasey: Boy howdy! => RT @Jim_Rawson_MD: T3 #jacr Hard to put
pfanderson patient in center of healthcare if we (docs) are standing there ours… Thu Apr 28 9:39:45 PDT 2016
fsodagari RT @LFordUNC: I agree. Talking directly can be effective and efficient #jacrhttps://t.co/sXKh0QuO5n Thu Apr 28 9:39:56 PDT 2016
pfanderson RT @Jim_Rawson_MD: T3 #jacr Hard to put the patient in the center of healthcare ifwe (docs) are standing there ourselves #ptexp #PFCC Thu Apr 28 9:39:56 PDT 2016
sumirpatelmd RT @TirathPatelMD: @JuliannaCzumMD @Jim_Rawson_MD that's great! Difficulty isthat some states mandate specific language verbatim in the le… Thu Apr 28 9:40:00 PDT 2016
grebeccahaines RT @LFordUNC: I agree. Talking directly can be effective and efficient #jacrhttps://t.co/sXKh0QuO5n Thu Apr 28 9:40:08 PDT 2016
pfanderson @Jim_Rawson_MD I like you. :) #JACR Thu Apr 28 9:40:16 PDT 2016
melissarvh T3 Patients would greatly appreciate laymanterms explanation of benefits & risks (tothemselves & others) of particular test/trial. #jacr Thu Apr 28 9:40:35 PDT 2016
findlungcancer T3 role play with physicians as patients and patients as physicians to reach betterunderstanding of each other #jacr Thu Apr 28 9:40:41 PDT 2016
stevenroberds T3 patients/parents should be required at trial design stage, small cost with big payoff#JACR https://t.co/YJwC7YrsRt Thu Apr 28 9:40:46 PDT 2016
nxtstop1 Practicing radiologists,esp in #mammography, might you address this patient'sexperience? What is your policy? #jacr https://t.co/snGSf4Zhd1 Thu Apr 28 9:41:00 PDT 2016
pinkconcussions Yes that 1 exactly @pfanderson @MightyCasey @ruthcarlosmd @SumirPatelMDgraphic novels are so helpful in communicating #JACR Thu Apr 28 9:41:03 PDT 2016
samuraiknitter RT @MightyCasey: Boy howdy! => RT @Jim_Rawson_MD: T3 #jacr Hard to putpatient in center of healthcare if we (docs) are standing there ours… Thu Apr 28 9:41:11 PDT 2016
akrishnarajmd RT @LFordUNC: I agree. Talking directly can be effective and efficient #jacrhttps://t.co/sXKh0QuO5n Thu Apr 28 9:41:18 PDT 2016
findlungcancer T3 information at multiple levels and via multiple media e.g. telenovelas #jacr Thu Apr 28 9:41:31 PDT 2016
jenny_writer T3 many pts feel rushed in appts., making engagement beyond appts. tough #JACR Thu Apr 28 9:41:35 PDT 2016
findlungcancer agree need to make time RT @Jenny_Writer: T3 many pts feel rushed in appts.,making engagement beyond appts. tough #JACR Thu Apr 28 9:41:54 PDT 2016
pfanderson RT @nxtstop1: Practicing radiologists,esp in #mammography, might you address thispatient's experience? What is your policy? #jacr https://… Thu Apr 28 9:42:02 PDT 2016
pinkconcussions RT @melissarvh: T3 Patients would greatly appreciate laymanterms explanation ofbenefits & risks (to themselves & others) of particular te… Thu Apr 28 9:42:07 PDT 2016
pfanderson RT @findlungcancer: T3 information at multiple levels and via multiple media e.g.telenovelas #jacr Thu Apr 28 9:42:23 PDT 2016
melissarvh RT @StevenRoberds: T3 patients/parents should be required at trial design stage,small cost with big payoff #JACR https://t.co/YJwC7YrsRt Thu Apr 28 9:42:24 PDT 2016
cibr_comm T3. Is there a stigma with being involved in a trial for patients? would starting w/moregeneral education on what a trial is help? #jacr Thu Apr 28 9:42:26 PDT 2016
pfanderson @findlungcancer And Youtube. And physical models / diagrams to manipulate. Infofor all senses. #JACR Thu Apr 28 9:42:55 PDT 2016
cibr_news RT @StevenRoberds: T3 patients/parents should be required at trial design stage,small cost with big payoff #JACR https://t.co/YJwC7YrsRt Thu Apr 28 9:43:00 PDT 2016
iamokaynow RT @Jim_Rawson_MD: T3 #jacr Hard to put the patient in the center of healthcare ifwe (docs) are standing there ourselves #ptexp #PFCC Thu Apr 28 9:43:02 PDT 2016
iamokaynow RT @MightyCasey: Boy howdy! => RT @Jim_Rawson_MD: T3 #jacr Hard to putpatient in center of healthcare if we (docs) are standing there ours… Thu Apr 28 9:43:24 PDT 2016
radiologyboy1 T3: Educating patients is key to engaging them in clinical trials. Patients should knowhow trials contribute to scholarly dialogue. #JACR Thu Apr 28 9:43:30 PDT 2016
findlungcancer T3 could make patient input a required part of IRB process #jacr Thu Apr 28 9:43:40 PDT 2016
fsodagari T3 We need public engagement sessions in our imaging facilities or waiting rooms oruse the monitors/TVs to show informative videos. #jacr Thu Apr 28 9:43:40 PDT 2016
ttmobile_us #JACR is now trending in USA, ranking 46 Thu Apr 28 9:43:54 PDT 2016
pinkconcussions T3 patients w/concussion & TBI are in a sudden, unexpected trauma #JACR socialworkers aren't part of the mix yet to help Thu Apr 28 9:44:00 PDT 2016
akrishnarajmd RT @RadiologyBoy1: T3: Educating patients is key to engaging them in clinical trials.Patients should know how trials contribute to scholar… Thu Apr 28 9:44:04 PDT 2016
iamokaynow RT @Jenny_Writer: T3 many pts feel rushed in appts., making engagement beyondappts. tough #JACR Thu Apr 28 9:44:13 PDT 2016
sumirpatelmd @findlungcancer @Jenny_Writer Need more *dedicated* staff & funding to makeappts less rushed & improve experience. or >24 hrs in day. #JACR Thu Apr 28 9:44:13 PDT 2016
findlungcancer interesting @RadiologyBoy1 many patients don't care about scholarly dialogue; careabout cures & helping others #jacr
melissarvh @CIBR_Comm Maybe. There is fear fear that you will get placebo, be forced to stopcurrent meds, get worse during trial. #jacr Thu Apr 28 9:44:37 PDT 2016
mightycasey True across entire care continuum => RT @Jenny_Writer: T3 many pts feel rushed inappts., making engagement beyond appts. tough #JACR Thu Apr 28 9:44:45 PDT 2016
nxtstop1 T3 R all free standing mammography centers, academic or otherwise, staffed at alltimes by radiologist >to communicate the diagnosis? #jacr Thu Apr 28 9:44:52 PDT 2016
sumirpatelmd RT @melissarvh: @CIBR_Comm Maybe. There is fear fear that you will get placebo,be forced to stop current meds, get worse during trial. #… Thu Apr 28 9:45:06 PDT 2016
findlungcancer RT @nxtstop1: T3 R all free standing mammography centers, academic or otherwise,staffed at all times by radiologist >to communicate the di… Thu Apr 28 9:45:07 PDT 2016
jenny_writer T3 Start w/making patients feel valued, respected at point of care #JACR Thu Apr 28 9:45:08 PDT 2016
juliannaczummd @Jenny_Writer Good point Jenny. What would motivate/incent patients & researchersto make time to work together on clinical trials? #JACR Thu Apr 28 9:45:09 PDT 2016
ruthcarlosmd T4: How can social media be used to increase participation and disseminateinformation? #JACR Thu Apr 28 9:45:11 PDT 2016
cibr_news @pfanderson @findlungcancer and apps websites where all that information can befound in one place and patients can look from home! #JACR Thu Apr 28 9:45:40 PDT 2016
sumirpatelmd @melissarvh @CIBR_Comm Agree; fear, is a big barrier #JACR Thu Apr 28 9:45:48 PDT 2016
pfanderson @CIBR_Comm Something like this? https://t.co/j3O9dVIALv #JACR#graphicmedicine #clinicaltrials
pfanderson RT @findlungcancer: interesting @RadiologyBoy1 many patients don't care aboutscholarly dialogue; care about cures & helping others #jacr Thu Apr 28 9:46:19 PDT 2016
pinkconcussions T3 I tried to help recruit concussion & TBI patient for imagining trial in 48 hrs for NYChospital but patients = deer in headlights #JACR Thu Apr 28 9:46:23 PDT 2016
mightycasey T4: I say "NIKE" i.e. "just do it." Share widely, enlist engagement of large ptcommunities (#lcsm #hcsm #medx #s4pm), SPREAD WORD. #jacr Thu Apr 28 9:46:28 PDT 2016
pfanderson RT @melissarvh: @CIBR_Comm Maybe. There is fear fear that you will get placebo,be forced to stop current meds, get worse during trial. #… Thu Apr 28 9:46:28 PDT 2016
mightycasey RT @CIBR_News: Love the idea of info sessions in #imaging facilities esp if they canbe webcast #JACR https://t.co/0hIRkD0xvV Thu Apr 28 9:47:13 PDT 2016
melissarvh T4 Patients can use #SocialMedia 2 spread word of opportunities. Great potential 2increase participation by sharing w/ support groups #jacr Thu Apr 28 9:47:13 PDT 2016
pfanderson RT @CIBR_News: @pfanderson @findlungcancer and apps websites where all thatinformation can be found in one place and patients can look fro… Thu Apr 28 9:47:25 PDT 2016
radiologyboy1 @findlungcancer I'm sure you are right. I guess I'm thinking of scholarly dialogue asmeans to find a cure/ improve care #jacr Thu Apr 28 9:47:32 PDT 2016
juliannaczummd @RadiologyBoy1 ...or perhaps how researchers use that dialogue to figure out thebest approaches to achieve ptdesired outcomes. #JACR Thu Apr 28 9:47:41 PDT 2016
melissarvh T4 Researchers can share info on their #SocialMedia sites. Can hold Q & A sessions,chats, post requirements, etc. Engage w/patients. #jacr Thu Apr 28 9:47:50 PDT 2016
pfanderson @CIBR_News @findlungcancer And PLEASE put ALL patient handouts given in thepatient PORTAL since paper gets lost! #JACR Thu Apr 28 9:47:56 PDT 2016
findlungcancer T4 we have live tweets of operations, we could live tweet a clinical trial consentprocess #jacr Thu Apr 28 9:48:00 PDT 2016
jim_rawson_md T4 #jacr #hcsm is opportunity for conversation between pts,#physicians & otherstakeholders. Chance to listen and hear. Thu Apr 28 9:48:06 PDT 2016
mightycasey RT @pfanderson: @CIBR_News @findlungcancer And PLEASE put ALL patienthandouts given in the patient PORTAL since paper gets lost! #JACR Thu Apr 28 9:48:14 PDT 2016
melissarvh RT @Jim_Rawson_MD: T4 #jacr #hcsm is opportunity for conversation betweenpts,#physicians & other stakeholders. Chance to listen and hear. Thu Apr 28 9:48:22 PDT 2016
stevenroberds T4 sharing on social media is especially effective from patienttopatient or parenttoparent #JACR Thu Apr 28 9:48:25 PDT 2016
sumirpatelmd T4 @nxtstop1 @twitter @ruthcarlosmd Love the idea of clinical trials having their own#hashtag! communication can be archived #JACR Thu Apr 28 9:48:25 PDT 2016
melissarvh RT @SumirPatelMD: T4 @nxtstop1 @twitter @ruthcarlosmd Love the idea of clinicaltrials having their own #hashtag! communication can be ar… Thu Apr 28 9:48:41 PDT 2016
katherine_deane RT @nxtstop1: T1 Just a point re:Clinical Trials:the absolute best way to have superboutcomes, high recruitment, etc is >CODesign< them.… Thu Apr 28 9:48:49 PDT 2016
nxtstop1 RT @SumirPatelMD: T4 @nxtstop1 @twitter @ruthcarlosmd Love the idea of clinicaltrials having their own #hashtag! communication can be ar… Thu Apr 28 9:48:50 PDT 2016
findlungcancer RT @SumirPatelMD: T4 @nxtstop1 @twitter @ruthcarlosmd Love the idea of clinicaltrials having their own #hashtag! communication can be ar… Thu Apr 28 9:48:53 PDT 2016
mightycasey Clinical trial are an area where utter disconnection of medical system is most visible.Just sayin' ... #jacr Thu Apr 28 9:48:55 PDT 2016
ruthcarlosmd @Jim_Rawson_MD what's your patient experience in understanding the report afterrollout? #JACR Thu Apr 28 9:48:58 PDT 2016
cibr_news T4 @ruthcarlosmd patients in trial use social media to talk about their experience withothers. Trial docs should hold tweet chat too #JACR Thu Apr 28 9:49:12 PDT 2016
akrishnarajmd T4: Make patients aware that the resources exist for them and that communicationthrough them is acceptable. #JACR Thu Apr 28 9:49:34 PDT 2016
Improving readability while not losing nuance is key. https://t.co/5YCzZzhnGM… Thu Apr 28 9:50:05 PDT 2016
melissarvh @ruthcarlosmd @Jim_Rawson_MD This reminds me... patients would LOVE to seeresults of trial (w/explanation) after completion. #jacr Thu Apr 28 9:50:13 PDT 2016
cibr_news RT @pfanderson: @CIBR_News @findlungcancer And PLEASE put ALL patienthandouts given in the patient PORTAL since paper gets lost! #JACR Thu Apr 28 9:50:22 PDT 2016
nxtstop1 @SumirPatelMD @twitter @ruthcarlosmd yes! World/ #patients are on @Twitter It'sthe modern day public square. "Meet in the square" #jacr Thu Apr 28 9:50:32 PDT 2016
findlungcancer RT @pfanderson: @CIBR_News @findlungcancer And PLEASE put ALL patienthandouts given in the patient PORTAL since paper gets lost! #JACR Thu Apr 28 9:50:39 PDT 2016
juliannaczummd @SumirPatelMD @nxtstop1 @ruthcarlosmd Yes!w/ a continuallyupdated publishedcentralized hashtag ontology for active clinical trials. #JACR Thu Apr 28 9:50:43 PDT 2016
melissarvh RT @pfanderson: @CIBR_News @findlungcancer And PLEASE put ALL patienthandouts given in the patient PORTAL since paper gets lost! #JACR Thu Apr 28 9:50:53 PDT 2016
nxtstop1 RT @JuliannaCzumMD: @SumirPatelMD @nxtstop1 @ruthcarlosmd Yes!w/ acontinuallyupdated published centralized hashtag ontology for active c… Thu Apr 28 9:51:04 PDT 2016
pfanderson RT @CIBR_Comm: T3. opted against trial option w/father. seemd like fightinglosingbattle turning him in2 subject w/out cognitive ability 2… Thu Apr 28 9:51:05 PDT 2016
stevenroberds T4 don't assume you know: ask patients what is most likely to encourage them tolearn more about a clinical trial opportunity #JACR Thu Apr 28 9:51:13 PDT 2016
findlungcancer T4 and we MUST have Open Notes for all doc patient encounters #jacr Thu Apr 28 9:51:14 PDT 2016
jim_rawson_md RT @nxtstop1: @SumirPatelMD @twitter @ruthcarlosmd yes! World/ #patients are on@Twitter It's the modern day public square. "Meet in the… Thu Apr 28 9:51:17 PDT 2016
cibrpubpolicy RT @AKrishnarajMD: T4: Make patients aware that the resources exist for them andthat communication through them is acceptable. #JACR Thu Apr 28 9:51:18 PDT 2016
pfanderson @CIBR_Comm Compassion needs to be included in the decision. Always. #JACR
melissarvh RT @AKrishnarajMD: T4: Make patients aware that the resources exist for them andthat communication through them is acceptable. #JACR Thu Apr 28 9:51:36 PDT 2016
pfanderson TRANSPARENCY NEEDED in healthcare and especially in research! #JACRhttps://t.co/G1EPtWgCHO Thu Apr 28 9:51:49 PDT 2016
pfanderson RT @findlungcancer: T4 and we MUST have Open Notes for all doc patientencounters #jacr Thu Apr 28 9:52:00 PDT 2016
melissarvh RT @pfanderson: TRANSPARENCY NEEDED in healthcare and especially inresearch! #JACR https://t.co/G1EPtWgCHO Thu Apr 28 9:52:12 PDT 2016
pinkconcussions T4 Use SM to share the faces behind stats #JACR just some of the boys who diedfrom brain injury playing football https://t.co/DaBdpYxYkd Thu Apr 28 9:52:17 PDT 2016
fsodagari I recommended adding a halfday patients session to RSNA meeting. Got noresponse :D #jacr Thu Apr 28 9:52:33 PDT 2016
findlungcancer T4 need to address any concerns with social media sharing and potential unblindingof the trial #jacr Thu Apr 28 9:52:35 PDT 2016
cibr_news @pfanderson Yes, very cool. As long as proper patient consent #JACR Thu Apr 28 9:52:41 PDT 2016
mightycasey T4: It's a sin that research= siloed. Great interview w/Biden re his alarm at lack ofinterop in #SCIENCE: https://t.co/rtg9MfZaSF #jacr Thu Apr 28 9:52:42 PDT 2016
pinkconcussions RT @pfanderson: @CIBR_News @findlungcancer And PLEASE put ALL patienthandouts given in the patient PORTAL since paper gets lost! #JACR Thu Apr 28 9:53:15 PDT 2016
cibr_news RT @melissarvh: @ruthcarlosmd @Jim_Rawson_MD This reminds me... patientswould LOVE to see results of trial (w/explanation) after completio… Thu Apr 28 9:53:17 PDT 2016
connect2nicu RT @StevenRoberds: Re T1: patient (or parent) input can guide protocoldevelopment: eg, time & frequency of imaging procedures #jacr Thu Apr 28 9:53:22 PDT 2016
findlungcancer how about including patients in all sessions @fsodagari don't make them feel 2ndclass #jacr Thu Apr 28 9:53:26 PDT 2016
pfanderson #JACR is burning the wires up today! Trending here. https://t.co/sPXZNKhiw5 Thu Apr 28 9:53:28 PDT 2016
pfanderson RT @MightyCasey: T4: It's a sin that research= siloed. Great interview w/Biden re hisalarm at lack of interop in #SCIENCE: https://t.co/rt… Thu Apr 28 9:53:46 PDT 2016
pinkconcussions RT @pfanderson: @CIBR_News Like the livetweeted / livestreamed surgeries fromHenry Ford? https://t.co/rqGzJhvkxG #JACR Thu Apr 28 9:53:49 PDT 2016
findlungcancer RT @MightyCasey: T4: It's a sin that research= siloed. Great interview w/Biden re hisalarm at lack of interop in #SCIENCE: https://t.co/rt… Thu Apr 28 9:54:01 PDT 2016
nxtstop1 RT @MightyCasey: T4: It's a sin that research= siloed. Great interview w/Biden re hisalarm at lack of interop in #SCIENCE: https://t.co/rt… Thu Apr 28 9:54:05 PDT 2016
pfanderson @MightyCasey I think I'd use a stronger word than "alarm" for that facial expression. ;)#JACR Thu Apr 28 9:54:15 PDT 2016
jim_rawson_md RT @pfanderson: #JACR is burning the wires up today! Trending here.https://t.co/sPXZNKhiw5 Thu Apr 28 9:54:28 PDT 2016
nxtstop1 RT @findlungcancer: T4 need to address any concerns with social media sharingand potential unblinding of the trial #jacr Thu Apr 28 9:54:29 PDT 2016
cibr_comm Looking forward to @JACRJournal hackathon and addressing patient access toresearch #jacr Thu Apr 28 9:54:31 PDT 2016
nxtstop1 RT @fsodagari: I recommended adding a halfday patients session to RSNA meeting.Got no response :D #jacr Thu Apr 28 9:54:38 PDT 2016
pfanderson @CIBR_News Oh, always. And they are very careful about that. #JACR Thu Apr 28 9:54:49 PDT 2016
jim_rawson_md RT @CIBR_Comm: Looking forward to @JACRJournal hackathon and addressingpatient access to research #jacr Thu Apr 28 9:55:01 PDT 2016
ruthcarlosmd CC: Without pts, there is no need for medical research or clinical care. Need to put#pts back in the center. #JACR https://t.co/meJy31IrtQ Thu Apr 28 9:55:08 PDT 2016
ruthcarlosmd Time for closing thoughts on patient engagement in research and clinical practice.#JACR Thu Apr 28 9:55:08 PDT 2016
findlungcancer me 2 need more patients; join us RT @CIBR_Comm: Looking forward to@JACRJournal hackathon and addressing patient access to research #jacr Thu Apr 28 9:55:11 PDT 2016
jenny_writer RT @CIBR_Comm: Looking forward to @JACRJournal hackathon and addressingpatient access to research #jacr Thu Apr 28 9:55:18 PDT 2016
tirathpatelmd RT @ruthcarlosmd: CC: Without pts, there is no need for medical research or clinicalcare. Need to put #pts back in the center. #JACR http… Thu Apr 28 9:55:59 PDT 2016
cibr_news RT @pfanderson: #JACR is burning the wires up today! Trending here.https://t.co/sPXZNKhiw5 Thu Apr 28 9:56:05 PDT 2016
radiologyacr RT @StevenRoberds: T4 don't assume you know: ask patients what is most likely toencourage them to learn more about a clinical trial opport… Thu Apr 28 9:56:09 PDT 2016
jim_rawson_md RT @ruthcarlosmd: Time for closing thoughts on patient engagement in research andclinical practice. #JACR Thu Apr 28 9:56:13 PDT 2016
findlungcancer CT Truly value patients as equal team members and the they will come #jacr Thu Apr 28 9:56:26 PDT 2016
pfanderson RT @ruthcarlosmd: CC: Without pts, there is no need for medical research or clinicalcare. Need to put #pts back in the center. #JACR http… Thu Apr 28 9:56:38 PDT 2016
connect2nicu @fsodagari I completely agree! Also need to show the normalization of imaging andhow it is applicable in every day life. #JACR Thu Apr 28 9:56:45 PDT 2016
melissarvh Patients want to feel significant, as if they matter as person & not just as "subject."Trials, for some, seen as last hope. Scared. #jacr Thu Apr 28 9:56:45 PDT 2016
radiologyacr RT @AKrishnarajMD: T4: Make patients aware that the resources exist for them andthat communication through them is acceptable. #JACR Thu Apr 28 9:56:46 PDT 2016
ruthcarlosmd Come 2 #JACR hackathon 5/14 in DChelp redesign how #pts access med litmeet@MightyCasey @findlungcancer @CancerGeek https://t.co/uqmp7TPRHo Thu Apr 28 9:56:54 PDT 2016
pinkconcussions T4 Twitter creates a global community =I have contacts all over the from tweetingfrom #IOCprev2014 #JACR now starting for @IOCprev2017 Thu Apr 28 9:56:55 PDT 2016
findlungcancer RT @ruthcarlosmd: CC: Without pts, there is no need for medical research or clinicalcare. Need to put #pts back in the center. #JACR http… Thu Apr 28 9:57:07 PDT 2016
pinkconcussions RT @CIBR_Comm: Looking forward to @JACRJournal hackathon and addressingpatient access to research #jacr Thu Apr 28 9:57:09 PDT 2016
nxtstop1 Hashtag= #JACRHack May 1415 (Open)Access 2JournalsMT @CIBR_Comm: to@JACRJournal hackathon and addressing patient access to research #jacr Thu Apr 28 9:57:12 PDT 2016
connect2nicu RT @melissarvh: @Jim_Rawson_MD Also more than costs many are too sick totravel & find it highly inconvenient. Schedule a factor @ times… Thu Apr 28 9:57:23 PDT 2016
jim_rawson_md CT #jacr More #ptengagement in research question design will lead to improvedpatient outcomes & #ptexp Thu Apr 28 9:57:27 PDT 2016
findlungcancer RT @nxtstop1: Hashtag= #JACRHack May 1415 (Open)Access 2JournalsMT@CIBR_Comm: to @JACRJournal hackathon and addressing patient access to… Thu Apr 28 9:57:31 PDT 2016
pfanderson "Patients in the center" is hype until patients are partnering in teaching, research &publications as well as clinical care #JACR Thu Apr 28 9:57:37 PDT 2016
cibrpubpolicy At a senate briefing today clinical trials came the main point was meeting patientswhere they are being efficient & educating them #jacr Thu Apr 28 9:57:42 PDT 2016
connect2nicu RT @findlungcancer: T3 need to remember all us will be patients and we bring theexpertise of our normal lives to that experience #jacr Thu Apr 28 9:57:43 PDT 2016
pfanderson RT @melissarvh: Patients want to feel significant, as if they matter as person & notjust as "subject." Trials, for some, seen as last hope… Thu Apr 28 9:57:46 PDT 2016
pfanderson RT @ruthcarlosmd: Come 2 #JACR hackathon 5/14 in DChelp redesign how #ptsaccess med lit meet@MightyCasey @findlungcancer @CancerGeek http… Thu Apr 28 9:57:55 PDT 2016
connect2nicu RT @JMHug: T1: Remember not all patients are the same. Use multiple orgs &channels to promote engagement in trials. Give a full seat @ tab… Thu Apr 28 9:57:56 PDT 2016
cibr_news RT @ruthcarlosmd: Come 2 #JACR hackathon 5/14 in DChelp redesign how #ptsaccess med lit meet@MightyCasey @findlungcancer @CancerGeek http… Thu Apr 28 9:57:57 PDT 2016
fsodagari @findlungcancer Not sure attending scientific sessions without medical backgroundcan help. need practical, understandable info. #jacr Thu Apr 28 9:58:03 PDT 2016
jenny_writer The real trick is including all types of pts., from all socioeconomic backgrounds#JACR Thu Apr 28 9:58:09 PDT 2016
pfanderson RT @nxtstop1: Hashtag= #JACRHack May 1415 (Open)Access 2JournalsMT@CIBR_Comm: to @JACRJournal hackathon and addressing patient access to… Thu Apr 28 9:58:09 PDT 2016
cibr_news Great point #JACR https://t.co/Opp5Sz2v2C Thu Apr 28 9:58:20 PDT 2016
findlungcancer true team members RT @pfanderson: "Patients in the center" is hype until patientsare partnering in teaching, research & publications #jacr Thu Apr 28 9:58:27 PDT 2016
melissarvh Thank you so much for giving me the opportunity to participate in today's mostinformative and enjoyable chat! Kudos to the hosts! #jacr Thu Apr 28 9:58:31 PDT 2016
pinkconcussions RT @CIBRPubPolicy: At a senate briefing today clinical trials came the main pointwas meeting patients where they are being efficient & edu… Thu Apr 28 9:58:51 PDT 2016
nxtstop1 Final thought: Remove the term "subject" from clinical trial language. It's people, justplain people, individuals, person etc #jacr Thu Apr 28 9:59:01 PDT 2016
pinkconcussions RT @findlungcancer: true team members RT @pfanderson: "Patients in the center" ishype until patients are partnering in teaching, research… Thu Apr 28 9:59:02 PDT 2016
lfordunc T2 Need to continue to invite and engage patients in improving experience inradiology #jacr Thu Apr 28 9:59:08 PDT 2016
jmhug T4: Look beyond traditional partners or you may miss an important part of thepopulation. Find champions w/in orgs to help spread word #JACR Thu Apr 28 9:59:14 PDT 2016
juliannaczummd Closing thought on #JACR tweetchat re:#ptexp in research trials: So glad we areengaging in this critical conversation. It's time has come. Thu Apr 28 9:59:16 PDT 2016
cibr_news CT @ruthcarlosmd Patient engagement is different for different diseases ages typesof trialshave to be flexible #JACR Thu Apr 28 9:59:16 PDT 2016
fsodagari RT @melissarvh: Patients want to feel significant, as if they matter as person & notjust as "subject." Trials, for some, seen as last hope… Thu Apr 28 9:59:19 PDT 2016
cibr_comm Agreed. are there any patient perspective article types in the literature? that may go along way! @pfanderson what do you think? #jacr Thu Apr 28 9:59:21 PDT 2016
jenny_writer RT @melissarvh: Patients want to feel significant, as if they matter as person & notjust as "subject." Trials, for some, seen as last hope… Thu Apr 28 9:59:33 PDT 2016
jim_rawson_md RT @nxtstop1: Hashtag= #JACRHack May 1415 (Open)Access 2JournalsMT@CIBR_Comm: to @JACRJournal hackathon and addressing patient access to… Thu Apr 28 9:59:43 PDT 2016
cibrpubpolicy RT @nxtstop1: Final thought: Remove the term "subject" from clinical trial language.It's people, just plain people, individuals, person et… Thu Apr 28 9:59:44 PDT 2016
pfanderson @betsyrolland @MightyCasey @dylanlscott The system AND the culture. Which iswhy convos like this matter. #JACR Thu Apr 28 9:59:52 PDT 2016
sumirpatelmd RT @JMHug: T4: Look beyond traditional partners or you may miss an important partof the population. Find champions w/in orgs to help sprea… Thu Apr 28 9:59:54 PDT 2016
cibr_news RT @pfanderson: "Patients in the center" is hype until patients are partnering inteaching, research & publications as well as clinical car… Thu Apr 28 9:59:55 PDT 2016
ruthcarlosmd thanks to @Jim_Rawson_MD @jegail @stevenroberds @MelissaRVH, guest modand special guests #JACR Thu Apr 28 10:00:02 PDT 2016
stevenroberds CT #jacr Seems we're on the same page: patient engagement has large value, smallbarriers. Make it happen. Thanks everyone! Thu Apr 28 10:00:06 PDT 2016
melissarvh RT @pfanderson: "Patients in the center" is hype until patients are partnering inteaching, research & publications as well as clinical car… Thu Apr 28 10:00:06 PDT 2016
ladonnamchalff2 RT @StevenRoberds: CT #jacr Seems we're on the same page: patient engagementhas large value, small barriers. Make it happen. Thanks everyo… Thu Apr 28 10:00:07 PDT 2016
findlungcancer patients self select 2 attend will have skill set req'd & start to gain acceptance bydocs/researchers @fsodagari @findlungcancer #jacr Thu Apr 28 10:00:23 PDT 2016
melissarvh RT @StevenRoberds: CT #jacr Seems we're on the same page: patient engagementhas large value, small barriers. Make it happen. Thanks everyo…
jim_rawson_md RT @LFordUNC: T2 Need to continue to invite and engage patients in improvingexperience in radiology #jacr Thu Apr 28 10:00:29 PDT 2016
pfanderson @CIBR_Comm I've been asking journals to include a column in each issue w/ patientcase studies from the pt POV. #JACR Thu Apr 28 10:00:35 PDT 2016
fsodagari RT @nxtstop1: Final thought: Remove the term "subject" from clinical trial language.It's people, just plain people, individuals, person et… Thu Apr 28 10:00:41 PDT 2016
bbethjo #JACR @BBethJo patient advocate joining late. Hi all. Thu Apr 28 10:00:41 PDT 2016
findlungcancer RT @nxtstop1: Final thought: Remove the term "subject" from clinical trial language.It's people, just plain people, individuals, person et… Thu Apr 28 10:00:58 PDT 2016
bbethjo RT @nxtstop1: Final thought: Remove the term "subject" from clinical trial language.It's people, just plain people, individuals, person et… Thu Apr 28 10:01:03 PDT 2016
cibr_news Thanks everyone for a great chat! #JACR https://t.co/9Gew98JS9y Thu Apr 28 10:01:09 PDT 2016
findlungcancer RT @ruthcarlosmd: thanks to @Jim_Rawson_MD @jegail @stevenroberds@MelissaRVH, guest mod and special guests #JACR Thu Apr 28 10:01:14 PDT 2016
cibr_comm patient created content/commentary in the journal shifts the lens the other way, in aformat that researchers are accustomed to! #jacr Thu Apr 28 10:01:19 PDT 2016
akrishnarajmd RT @nxtstop1: Hashtag= #JACRHack May 1415 (Open)Access 2JournalsMT@CIBR_Comm: to @JACRJournal hackathon and addressing patient access to… Thu Apr 28 10:01:21 PDT 2016
pfanderson @CIBR_Comm There are a FEW examples of articles like this, but hard to find. NoMeSH heading I know of for "bypatient" #JACR #MEDLIBS Thu Apr 28 10:02:06 PDT 2016
bbethjo @melissarvh I saw trials as best first hope. #JACR Thu Apr 28 10:02:06 PDT 2016
cibr_news @BBethJo HI Beth thanks for joining! Not too late to give your thoughts #JACR Thu Apr 28 10:02:12 PDT 2016
findlungcancer RT @ruthcarlosmd: Come 2 #JACR hackathon 5/14 in DChelp redesign how #ptsaccess med lit meet@MightyCasey @findlungcancer @CancerGeek http… Thu Apr 28 10:02:28 PDT 2016
pfanderson @betsyrolland @MightyCasey @dylanlscott Hyperbole and blame createdefensiveness instead of collaboration & partnership #JACR Thu Apr 28 10:02:37 PDT 2016
pinkconcussions T4 social media allows me to share the three best videos (2 cartoons) and my fav appwith just this link https://t.co/VdDoq2ccUM #JACR Thu Apr 28 10:02:41 PDT 2016
pfanderson RT @nxtstop1: Final thought: Remove the term "subject" from clinical trial language.It's people, just plain people, individuals, person et… Thu Apr 28 10:02:56 PDT 2016
pfanderson RT @JMHug: T4: Look beyond traditional partners or you may miss an important partof the population. Find champions w/in orgs to help sprea… Thu Apr 28 10:03:05 PDT 2016
cibr_comm Librarian's perspectives are soooo useful! we should all listen up #jacrhttps://t.co/p6LY2ZFKhG Thu Apr 28 10:03:06 PDT 2016
pfanderson RT @ruthcarlosmd: thanks to @Jim_Rawson_MD @jegail @stevenroberds@MelissaRVH, guest mod and special guests #JACR Thu Apr 28 10:03:37 PDT 2016
nxtstop1 Will Storify this important chat ~ thanks to @ruthcarlosmd and @Jim_Rawson_MDand each one of you 4 your invaluable insights... #jacr Thu Apr 28 10:03:44 PDT 2016
connect2nicu #JACR provided parents understanding of benefits & risk if their child participates. Asa parent I will to say no, is not benefit > risk Thu Apr 28 10:04:06 PDT 2016
findlungcancer RT @nxtstop1: Will Storify this important chat ~ thanks to @ruthcarlosmd and@Jim_Rawson_MD and each one of you 4 your invaluable insights.… Thu Apr 28 10:04:47 PDT 2016
mightycasey @betsyrolland @pfanderson @dylanlscott Agreed, but from a patient POV, it seemsreally random/impenetrable. #openscience #jacr Thu Apr 28 10:05:04 PDT 2016
connect2nicu #JACR I am founder of Connect2nicu app that provides support for parents who havebabies in the NICU Thu Apr 28 10:05:29 PDT 2016
pfanderson @CIBR_Comm I go to #MLAnet16 , walk exhibit hall, ask journals to require#plainlang summary OPEN for all papers, & patient POV column #JACR Thu Apr 28 10:05:30 PDT 2016
pfanderson @CIBR_Comm What if DOCS walked the exhibit halls talking to publishers asking forthe same? #JACR Thu Apr 28 10:05:57 PDT 2016
fsodagari Thanks @ruthcarlosmd, @JACRJournal and every body for this fantastic Tcaht. Ienjoyed and learned a lot. Look forward to future ones. #jacr Thu Apr 28 10:05:59 PDT 2016
pinkconcussions RT @nxtstop1: Will Storify this important chat ~ thanks to @ruthcarlosmd and@Jim_Rawson_MD and each one of you 4 your invaluable insights.… Thu Apr 28 10:06:40 PDT 2016
jmhug Thanks for such an engaging chat and warm welcome. It was my firstever chat & Iloved every minute. Hope to join more in the future. #JACR Thu Apr 28 10:07:19 PDT 2016
pfanderson @nxtstop1 @ruthcarlosmd @Jim_Rawson_MD Let me know when done? I wanted toStorify, but don't have time. Thrilled you are doing it! #JACR Thu Apr 28 10:07:35 PDT 2016
pfanderson RT @MightyCasey: @betsyrolland @pfanderson @dylanlscott Agreed, but from apatient POV, it seems really random/impenetrable. #openscience #… Thu Apr 28 10:08:05 PDT 2016
pinkconcussions Every time I join a tweet chat I meet cool people who I call & try to meet in personbuild real connections @ruthcarlosmd @JACRJournal #JACR Thu Apr 28 10:08:55 PDT 2016
bbethjo RT @findlungcancer: T3 could make patient input a required part of IRB process #jacrThu Apr 28 10:09:12 PDT 2016
kristinahoque So sorry got pulled away to discuss a procedure w/ patient on a trial with a phonetranslator! What clinical correlation! Thanx all! #JACR Thu Apr 28 10:09:12 PDT 2016
fsodagari RT @connect2nicu: @fsodagari I completely agree! Also need to show thenormalization of imaging and how it is applicable in every day life… Thu Apr 28 10:09:26 PDT 2016
pinkconcussions T4 Making stats into real people Hard to shrug off twenty or so boys who die eachyear when you see their faces & who we lost #JACR Thu Apr 28 10:11:03 PDT 2016
fckboobiecancer RT @BBethJo: #JACR @BBethJo patient advocate joining late. Hi all. Thu Apr 28 10:11:33 PDT 2016
bbethjo RT @SumirPatelMD: T3: Many patients may not know that they can be so involved.How about asking them to participate in design during routin… Thu Apr 28 10:11:43 PDT 2016
bbethjo RT @findlungcancer: T2 The rule, if the patient does not understand it is NOT thepatient's fault the patient does not FAIL treatment #j… Thu Apr 28 10:12:52 PDT 2016
bbethjo RT @MightyCasey: RT @findlungcancer: clinician view of burdensome VERYdifferent fm patient view @melissarvh same 4 bothersome = not deadly… Thu Apr 28 10:14:24 PDT 2016
bbethjo RT @fsodagari: T2: Radiologists should TALK to the patients. Most research studiesdo not need extra travel or tests. Just needs a direct d… Thu Apr 28 10:14:31 PDT 2016
bbethjo RT @ruthcarlosmd: @MightyCasey need informed consent for imaging care tootest
