#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
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself #patientchat
Kevin Freiert @K_SalemOaks
Kevin Freiert from @salemoaks here in Connecticut. Looking forward to a lively discussion. #patientchat #patienteducation #pharma #patientengagement
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat
Barby Ingle 📣 @BarbyIngle
I am @BarbyIngle, best selling author on pain topics, #CheerleaderofHOPE, Pres. of International Pain Foundation (iPain) @powerofpain participating from sunny AZ today in #PatientChat... oh, and I love ellies! Glad to be here with you all! https://t.co/yfr0hkMijF
Patient Chat @patientchat
Please continue with intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
The Advocate Is In @TheAdvocateIsIn
Hi! Claire's here from DC. Just got back from #wcPatientCongress where involving patients in clinical research was a big topic. #patientchat
AutonomicRN© @AutonomicRN
Hey all, it's Kim. Joining from Wisconsin. #patientchat
Vera Rulon FAHIMA @vrulon
@patientchat Vera Rulon here. From NY. I'm an advocate, artist, and consultant. #patientchat
Mary MACK @MaryOCMack
Hello I'm Mary-- a patient/advocate for the Laminopathies. #patientchat
Patient Chat @patientchat
Today's #patientchat is solely informational and not a substitute for speaking with a doctor who's familiar w/your medical needs and history
AutonomicRN© @AutonomicRN
@BarbyIngle @powerofpain Hey Barby! #patientchat
AutonomicRN© @AutonomicRN
@TheAdvocateIsIn That sounds very exciting! #patientchat
Alan Brewington @abrewi3010
Alan here ready to share my Friday storytelling session. My #arthritis #rheum #mentalhealth #caregiving experiences shape my story. #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/99wmvHL0S2 #patientchat
Patient Empowerment @power4patients
@K_SalemOaks @SalemOaks Hi Kevin! It was great to meet you at #Patients2018 in Philly last week! We're happy you're joining us today. #patientchat
Vera Rulon FAHIMA @vrulon
@AutonomicRN @TheAdvocateIsIn Looking forward to learning more #patientchat
Heather McCullen @H_SalemOaks
Hi #patientchat checking in from Ann Arbor, MI. Also with @SalemOaks
Amanda @LAlupusLady
Amanda, living w/ Lupus, Osteoarthritis, Fibro and chronic pain. Hugs and smiles to all! Happy #patientchat
Beth Morton @beth_morton
Hello everyone! Beth, joining from Vermont. Looking forward to today's chat! #patientchat
Mighty Casey Quinlan @MightyCasey
Greetings, all! Mighty Casey here, #healthliteracy writer for @power4patients, science nerd, research maven, media producer, cancer warrior. #patientchat
AutonomicRN© @AutonomicRN
@abrewi3010 Hi Alan! #patientchat
Mighty Casey Quinlan @MightyCasey
RT @TheAdvocateIsIn: Hi! Claire's here from DC. Just got back from #wcPatientCongress where involving patients in clinical research was a b…
Patient Chat @patientchat
Today's #patientchat topic is Understanding Medical Research https://t.co/9TF218FlMj
Vera Rulon FAHIMA @vrulon
@LAlupusLady Hi there!! Looking forward to chatting!! #patientchat
Amanda @LAlupusLady
With a great smile! #patientchat https://t.co/oZnYLY3Lpv
AutonomicRN© @AutonomicRN
@LAlupusLady Hi Amanda! #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
Alan Brewington @abrewi3010
@AutonomicRN Hello and happy Friday! #PatientChat
Patient Empowerment @power4patients
RT @patientchat: Today's #patientchat topic is Understanding Medical Research https://t.co/9TF218FlMj
Kevin Freiert @K_SalemOaks
Hoping to add some insights to the discussion. #patientchat #patienteducation #pharma #patientengagement https://t.co/uZFwSEFvDd
Jamie Holloway, PhD @jamienholloway
Hi all-- Jamie here in the DC area, breast cancer researcher, patient, now advocate. #patientchat
Amanda @LAlupusLady
RT @patientchat: Today's #patientchat topic is Understanding Medical Research https://t.co/9TF218FlMj
Vera Rulon FAHIMA @vrulon
@LAlupusLady And with #bells on! :) #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: https://t.co/9TF218FlMj #patientchat
Nigel H @Crohnoid
Hi. Nigel from London UK. I'm PPI lead on a research study looking at the use of #MRI information in #IBD #patientchat
Mighty Casey Quinlan @MightyCasey
@TheAdvocateIsIn @power4patients And we'll actually SEE each other in a couple weeks!! #rightcare #patientchat
Amanda @LAlupusLady
@TheAdvocateIsIn Great Twitter name. #patientchat
Barby Ingle 📣 @BarbyIngle
Good morning everyone joining... like... @beth_morton @MightyCasey @H_SalemOaks @power4patients Looking forward to today's #patientchat
Patient Chat @patientchat
T1: Do you read medical research publications? Why or why not? #patientchat
Kevin Freiert @K_SalemOaks
A1: Yes. I have been in R&D for 30+ years and the scientific literature is the lifeblood. #patientchat #patienteducation #pharma #patientengagement @salemoaks https://t.co/Mxwt3UslEK
ShereeseM, MS/MBA @ShereesePubHlth
Hello all. I'm Shereese,@CitizenHealthio ambassador, fierce patient advocate, and HIT disruptor. I'm grabbing a coffee, BRB #patientchat https://t.co/cIjHfYhEo8
AutonomicRN© @AutonomicRN
Forgot to put that I’m a #raredisease and #patientjourney #advocate and health care experience and #chronicillness blogger. Living with multiple rare diseases and #dysautonomia #patientchat
Patient Empowerment @power4patients
RT @patientchat: T1: Do you read medical research publications? Why or why not? #patientchat
Amanda @LAlupusLady
RT @patientchat: T1: Do you read medical research publications? Why or why not? #patientchat
Your GPS Doc, LLC @yourgpsdoc
Sorry I'm a little late! Nicole Rochester from Maryland- physician, caregiver, and professional patient advocate. #patientchat
PatientOrator @PatientOrator
Hi all first time joining #patientchat | Kistein Monkhouse, NYC from @PatientOrator
Jeremy Murphy @jeremypmurphy
RT @patientchat: Today's #patientchat topic is Understanding Medical Research https://t.co/9TF218FlMj
Jeremy Murphy @jeremypmurphy
RT @patientchat: T1: Do you read medical research publications? Why or why not? #patientchat
Geeky Fox @TechKitsune
Yes! Both for work and for myself. Gives me insight in to new findings and advancements in medical. #patientchat
Nigel H @Crohnoid
T1: Yes I do but quite often only the abstracts because I don't have access to the full papers unless they are public domain #patientchat
Vera Rulon FAHIMA @vrulon
T1: Yes!! Read medical research all the time - provides insights (and yes questions) - can then discuss with Dr, innovators, connect dots #patientchat
The Advocate Is In @TheAdvocateIsIn
T1: Occasionally, when I am curious about a study quoted in an article I read or when I am trying to figure out why my body is doing something weird. #patientchat
Jamie Holloway, PhD @jamienholloway
T1: I read medical research publications to make sense of sensationalized headlines in big media outlets. #patientchat
Your GPS Doc, LLC @yourgpsdoc
I encourage patients to be familiar with medical research, but even as a physician it can be difficult to understand the terminology and statistical tests used to prove or disprove a theory in research articles. #patientchat https://t.co/eJhOxxczTM
Bingle @TheBingle
Bingle joining in from NY with PtExperience #patientchat
Mary MACK @MaryOCMack
T1. Yes, I read medical research to stay informed on the cardiolaminopathies. #patientchat
Amanda @LAlupusLady
@patientchat A1 Reading medical research papers and publications like @HealthITNews @MobiHealthNews as well as condition specific papers is a great way to stay informed. #patientchat
Ken Taylor @KenRayTaylor
T1: On some things i have an interest in or somebody brings it to my attn or an article headline will come across my readings. I do not subscribe to anything is the biggest reason. #patientchat https://t.co/03UVNpq8tR
Patient Empowerment @power4patients
@PatientOrator Welcome! We hope you enjoy the discussion. Please send us your feedback after the chat. It's always great to get a fresh, new perspective #patientchat
Mighty Casey Quinlan @MightyCasey
T1: I do, but am often frustrated by paywalls. Seems like the last bastion of the patriarchy, "you're just a citizen, you can't read this" #patientchat
Alan Brewington @abrewi3010
T1 sort of sometimes. I don’t have a scientific mind or ability to understand it. I understand patient stories so I usually wait for those. #patientchat
AutonomicRN© @AutonomicRN
T1: I read the publications to keep up on the new research but also if I'm looking at current treatments that I'm on. Multiple conditions makes it necessary for me to be looking into everything. Plus there's the whole being a #nurse thing too... #patientchat
Amanda @LAlupusLady
RT @vrulon: T1: Yes!! Read medical research all the time - provides insights (and yes questions) - can then discuss with Dr, innovators, co…
Kevin Freiert @K_SalemOaks
SO important. The news media squeezes every last syllable out of the 13 seconds they give research - and they hype it. #patientchat #patienteducation #pharma #patientengagement https://t.co/9e0dufy1uC
Barby Ingle 📣 @BarbyIngle
T1: I do read med journals, but find that many talk in theory. I like reality. I have also written a few articles for med journals & the style is so diff for their reqs, I feel that a lot gets left out that would be helpful to PTs & pros I like Pt media materials #PatientChat https://t.co/6gA68Mfj9Z
Vera Rulon FAHIMA @vrulon
@jamienholloway great answer - need to get past the hype to find what is true and what might work #patientchat
AutonomicRN© @AutonomicRN
@ShereesePubHlth @CitizenHealthio I'm hitting up some caffeine now too! Good to 'see' you! #patientchat
Beth Morton @beth_morton
T1: Yes! My background is in education #research. Now that I’m unable to work, I’m my own research project. I want to make sure I’m up to date on treatments. It can be hard not having full access to the literature, but even reading abstracts is useful. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@yourgpsdoc Hi Neighbor #patientchat #EasterShore https://t.co/j5eXKW9QAK
Kevin Freiert @K_SalemOaks
A1: I have always carried around a stack of "To Read Later" articles. #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Vera Rulon FAHIMA @vrulon
@yourgpsdoc good point - I always have more questions - helps create the dialogue and drive at the truth #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T1: I do read med journals, but find that many talk in theory. I like reality. I have also written a few articles for med j…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T1: I do read med journals, but find that many talk in theory. I like reality. I have also written a few articles for med j…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T1: I do read med journals, but find that many talk in theory. I like reality. I have also written a few articles for med j…
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T1: On some things i have an interest in or somebody brings it to my attn or an article headline will come across my read…
AutonomicRN© @AutonomicRN
This is a really big issue, so many publications aren't open access. #Patients shouldn't have to pay to look at research. #patientchat https://t.co/woAFSRnvMM
Your GPS Doc, LLC @yourgpsdoc
@MightyCasey Even docs don't have access to a lot of it unless you are a paid subscriber to the journal. #patientchat
Kevin Freiert @K_SalemOaks
A1: Keeping up with the literature, or researching older articles, helps me sharpen my critical thinking and stay aware of changing trends. #patientchat #patienteducation #pharma #patientengagement @SalemOaks https://t.co/avLEvL4Vak
Mighty Casey Quinlan @MightyCasey
T1: one of my goals with reading research is to translate it for non-scientist humans. BTW, wrote a post for @power4patients on how-to: https://t.co/aeeBhMPrys #science #patientchat
Anthony Leon @anthonynotleon
@LAlupusLady @patientchat @HealthITNews @MobiHealthNews I enjoy aggregaters like that so I can see what peaks my interest and dig in deeper if I like it. Although, Google is getting scary good at knowing my interests. When I bring up my mobile search bar, it highlights breaking articles on my topics which include HIT #patientchat
Alan Brewington @abrewi3010
T1 anyone that puts up a paywall to medical research publications should be jailed. Paywalls are just wrong. #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T1: On some things i have an interest in or somebody brings it to my attn or an article headline will come across my read…
Your GPS Doc, LLC @yourgpsdoc
@ShereesePubHlth HI Shereese! #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T1: On some things i have an interest in or somebody brings it to my attn or an article headline will come across my read…
Kevin Freiert @K_SalemOaks
You may be able to go to your local library or Community college to get academic access. #patientchat https://t.co/7Y6ZhijIgA
Jamie Holloway, PhD @jamienholloway
T1: also read research to help others understand it-- friends who need help making decisions #patientchat
AutonomicRN© @AutonomicRN
@beth_morton Abstracts can give a huge amount of information without having to comb through the whole publication to find what may be just a paragraph that you were looking for! #patientchat
Patient Empowerment @power4patients
RT @vrulon: @yourgpsdoc good point - I always have more questions - helps create the dialogue and drive at the truth #patientchat
Mighty Casey Quinlan @MightyCasey
RT @BarbyIngle: T1: I do read med journals, but find that many talk in theory. I like reality. I have also written a few articles for med j…
Patient Chat @patientchat
Topic 2 (T2:) coming up… https://t.co/9TF218FlMj #patientchat
Nigel H @Crohnoid
T1: I like to read the research that lies behind the sensationali headlines #patientchat
Mighty Casey Quinlan @MightyCasey
RT @vrulon: @jamienholloway great answer - need to get past the hype to find what is true and what might work #patientchat
Mighty Casey Quinlan @MightyCasey
RT @jamienholloway: T1: I read medical research publications to make sense of sensationalized headlines in big media outlets. #patientchat
Amanda @LAlupusLady
A1 wrote a commentary for @bmj_latest from POV of patient who uses Social Media to connect. Wish more publications had #PatientsIncluded #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @MightyCasey: T1: one of my goals with reading research is to translate it for non-scientist humans. BTW, wrote a post for @power4patien
Vera Rulon FAHIMA @vrulon
@yourgpsdoc @MightyCasey So true. Once I was no longer working for a large corporation access became an issue. Need transparency. #patientchat
Jamie Holloway, PhD @jamienholloway
@AutonomicRN I'm lucky as an alumnae I still get access to online medical journals. #patientchat
Kevin Freiert @K_SalemOaks
@AutonomicRN @beth_morton Good way to screen and see if reading the full article is worth your time. #patientchat
Bingle @TheBingle
@patientchat T1 Read what interests me. Sometimes even patients can find fascinating coincidences. #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T1 Often and very enthusiastically. I read some research for our weekly #HTReads chat but I also read 15 minutes each morning at a minimum to keep current. #patientchat https://t.co/b8VuyuHTIR
Mighty Casey Quinlan @MightyCasey
RT @AutonomicRN: @beth_morton Abstracts can give a huge amount of information without having to comb through the whole publication to find…
Your GPS Doc, LLC @yourgpsdoc
@MightyCasey @power4patients That's awesome. Will check out your post! #patientchat
Rheumatoid Patient @rheumpatient
Sorry I'm late. thought it was at 6pm UK time for some reason. #patientchat
Amanda @LAlupusLady
RT @anthonynotleon: @LAlupusLady @patientchat @HealthITNews @MobiHealthNews I enjoy aggregaters like that so I can see what peaks my intere…
Anne Polta @annepolta
@yourgpsdoc I agree it's challenging to know how to interpret the research. There's a tendency to either oversimplify or miss the point. #patientchat
Patient Chat @patientchat
T2: Beyond doctors, where can patients find reliable information on medical research? #patientchat
Bingle @TheBingle
@K_SalemOaks @SalemOaks Fascinating. #patientchat
Kevin Freiert @K_SalemOaks
A2: Journals and associated websites, newsletters. This is where your doctor should be going? #patientchat #patienteducation #pharma #patientengagement @SalemOaks https://t.co/E4RzhTRsMw
PatientOrator @PatientOrator
T1: Absolutely! Medical research publications acts as as a key to understanding and solving many of the problems we encounter in health care, from micro to macro level. #patientchat https://t.co/ukX3kyUpQG
Barby Ingle 📣 @BarbyIngle
T2: Pt's should be looking online at the actual data, where the articles are derived from. ex. I have seen people think that Vitamin C infusions are used to reduce spread based on an article they read and spread... truth is read the data, it doesn't say that. #PatientChat https://t.co/cYC9vOAT1k
Amanda @LAlupusLady
Vintage but https://t.co/WMRbuHGrbR #patientchat https://t.co/irxK5hScya
Bingle @TheBingle
@ShereesePubHlth @CitizenHealthio I'll find a Dr. to write an Rx..... #patientchat
Patient Empowerment @power4patients
T!: I met a woman yesterday who told me she's considered a "bad" patient because she reads & researches all she can before meeting with her Drs. I'm nominating her for Patient of the Year #patientchat
Vera Rulon FAHIMA @vrulon
@TheBingle @patientchat Coincidences are change and innovation lifeblood #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @BarbyIngle: T1: I do read med journals, but find that many talk in theory. I like reality. I have also written a few articles for med j…
Rheumatoid Patient @rheumpatient
T1: I do, but I have a science/healthcare background and luckily currently have institutional access. #patientchat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T2: Pt's should be looking online at the actual data, where the articles are derived from. ex. I have seen people think tha…
International Pain Foundation® @powerofpain
RT @BarbyIngle: T2: Pt's should be looking online at the actual data, where the articles are derived from. ex. I have seen people think tha…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T2: Pt's should be looking online at the actual data, where the articles are derived from. ex. I have seen people think tha…
Kevin Freiert @K_SalemOaks
A2: Patient Advocacy Organizations usually can guide you in the right direction. #patientchat #patienteducation #pharma #patientengagement @salemoaks
Alan Brewington @abrewi3010
T2 fellow patients are an excellent resource. Good research and info travels through communities quickly. #patientchat
Amanda @LAlupusLady
RT @patientchat: T2: Beyond doctors, where can patients find reliable information on medical research? #patientchat
AutonomicRN© @AutonomicRN
It may be worth also checking into the national organizations for your condition to see if perhaps they have any access to journals. I know that any studies @patientslikeme has their name on is required to be free. #patientchat
Anne Polta @annepolta
I highly recommend @HealthNewsRevu. I've learned a lot from this site. #patientchat
Your GPS Doc, LLC @yourgpsdoc
@power4patients This makes me very sad! I second your nomination. #patientchat
Mary MACK @MaryOCMack
T2. Pubmed/ ncbi nlm nih gov #patientchat
Jamie Holloway, PhD @jamienholloway
T2: For medical research info, patients need a RELIABLE scientific source. (not headlines!) Look for professional societies' patient sections. i.e., https://t.co/lqymou6N6o from @ASCO is excellent for cancer info #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T2: Beyond doctors, where can patients find reliable information on medical research? #patientchat
Becky Brandt RN @bbhomebody
Hi everyone, I'm late, reading posts at stop lights etc. HAPPY #PATIENTCHAT FRIDAY!
Patient Empowerment @power4patients
RT @patientchat: T2: Beyond doctors, where can patients find reliable information on medical research? #patientchat
Alan Brewington @abrewi3010
T2 conferences like #wtfix #medx #medxed are excellent sources of research. #patientchat
Geeky Fox @TechKitsune
T2: One of our #nurses wrote a great blog about finding credible info online. Things with HON on them, https://t.co/AFm9mXHWgl, healthy people, medline, some cms. There is a good amount out there I think we are still unaware of as patients. #patientchat
Nigel H @Crohnoid
T1: I do often question the value of some of the research when the outcome is blindingly obvious anyway #patientchat
The Advocate Is In @TheAdvocateIsIn
T2: Journals, publications from academic research centers and pharmaceutical companies, health and science articles from reputable journos, disease-centric non-profits, Center for Science in the Public Interest. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @abrewi3010: T2 conferences like #wtfix #medx #medxed are excellent sources of research. #patientchat
Kevin Freiert @K_SalemOaks
A2: Visit a pharma company or university you know is working in your disease area. Go deeper than what is on their website. #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Barby Ingle 📣 @BarbyIngle
T1: wow, my providers LOVE me for reading and researching and being an involved patient... I think it would be time to switch doctors if they thought that was bad. Its just good patient'ing #patientchat https://t.co/fMCXh8pdIg
Vera Rulon FAHIMA @vrulon
T2: That's tough given access isn't easy - and wonder if sites like WebMD include late breaking or new research timely - I always look at references to validate #patientchat
Beth Morton @beth_morton
T2: To find the latest research, I follow a bunch of #neurology & #migraine journals and advocacy/foundations on Twitter and subscribe to their newsletters; e.g., @MigraineRF and @HeadacheJournal #patientchat
Patient Empowerment @power4patients
RT @abrewi3010: T2 fellow patients are an excellent resource. Good research and info travels through communities quickly. #patientchat
AutonomicRN© @AutonomicRN
T2: I go online to multiple sources @RareDiseases @NIH @Medscape are all great sources for information. Also https://t.co/gw09aqar0G and of course @Clara_Health has a ton of info!!! #patientchat
Ken Taylor @KenRayTaylor
T2: NIH and FDA are good places to find research on most things. Disease specific NonPfrofits like to share research with patients to educate and offer HOPE. #patientchat https://t.co/sfKHCzmN9I
Patient Empowerment @power4patients
RT @MightyCasey: T1: one of my goals with reading research is to translate it for non-scientist humans. BTW, wrote a post for @power4patien
Amanda @LAlupusLady
@patientchat A2 Reading medical news and articles shared by my Twitter resources. @MMaxwellStroud @MandiBPro @JohnSharp @Colin_Hung @JoeBabaian and @nickisnpdx are a few respected friends who I trust. #patientchat
AutonomicRN© @AutonomicRN
RT @K_SalemOaks: A2: Visit a pharma company or university you know is working in your disease area. Go deeper than what is on their websit…
Mighty Casey Quinlan @MightyCasey
T2: Peer networks (condition related) have become a place where research intel gets shared. Key is to make sure there's science-minded moderation so woo-woo/Dr. Oz bushwa risk is minimized. #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T2: NIH and FDA are good places to find research on most things. Disease specific NonPfrofits like to share research with…
Mighty Casey Quinlan @MightyCasey
RT @KenRayTaylor: T2: NIH and FDA are good places to find research on most things. Disease specific NonPfrofits like to share research with…
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T2: NIH and FDA are good places to find research on most things. Disease specific NonPfrofits like to share research with…
Amanda @LAlupusLady
RT @power4patients: T!: I met a woman yesterday who told me she's considered a "bad" patient because she reads & researches all she can bef…
Vera Rulon FAHIMA @vrulon
T2: great thoughts folks! NIH, etc. Scientific - not headlines - growing tired of the slew of catch phrases and sensationalized language! #patientchat
AutonomicRN© @AutonomicRN
@bbhomebody Hey Becky! #patientchat
Kevin Freiert @K_SalemOaks
A2: Look for Review articles. These will help you understand a broad swath of research. #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Rheumatoid Patient @rheumpatient
@jamienholloway You can't rely on media reporting. In our recent study we found many sensationalised articles, and that research touted as offering hope' or 'breakthrough' had often only been done on mice! #patientchat https://t.co/9Ue5ps63My
nobism @nobismhealth
RT @AutonomicRN: Forgot to put that I’m a #raredisease and #patientjourney #advocate and health care experience and #chronicillness blogger…
Ken Taylor @KenRayTaylor
RT @KenRayTaylor: T2: NIH and FDA are good places to find research on most things. Disease specific NonPfrofits like to share research with…
Joe Babaian @JoeBabaian
RT @LAlupusLady: @patientchat A2 Reading medical news and articles shared by my Twitter resources. @MMaxwellStroud @MandiBPro @JohnSharp @C
Patient Empowerment @power4patients
RT @MightyCasey: T2: Peer networks (condition related) have become a place where research intel gets shared. Key is to make sure there's sc…
Vera Rulon FAHIMA @vrulon
@LAlupusLady @patientchat @MMaxwellStroud @MandiBPro @JohnSharp @Colin_Hung @JoeBabaian @nickisnpdx Great list! #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up… https://t.co/9TF218FlMj #patientchat
Kevin Freiert @K_SalemOaks
@rheumpatient @jamienholloway A2: Places to avoid – USA Today, Network or cable news, self-help magazines. They might give you a topic, but then do the research to go deeper. #patientchat #patienteducation #pharma #patientengagement @SalemOaks
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T2: NIH and FDA are good places to find research on most things. Disease specific NonPfrofits like to share research with…
Beth Morton @beth_morton
T2: Oh, yeah! Anytime there is a professional #heachache conference I tend to stalk #migraine doctors on Twitter and make note of what they are sharing/presenting. #patientchat https://t.co/7XX9qswpZu
Mighty Casey Quinlan @MightyCasey
T2: @BioMedCentral + @PLOS + @PLOSONE are great open access resources. @bmj_latest also has lots of open access articles. #patientchat
Nigel H @Crohnoid
T2: I hate the use of relative statistics by journalists. I want to know if the 50% increased risk is still a low number. I wish they would use absolute statistics, but then that doesn't make for a good headline. You need to read original research to make a judgement #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
T2 On-line research and peer-reviewed journal offer reliable information and if you're a research junky, citations for more research. Ex #Sage #ERIC ,etc. Here are more: https://t.co/vcWWsE71lv #patientchat https://t.co/pjWfAbYOCq
Your GPS Doc, LLC @yourgpsdoc
RT @K_SalemOaks: A2: Look for Review articles. These will help you understand a broad swath of research. #patientchat #patienteducation #…
Patient Chat @patientchat
T3: What are some of the questions to ask yourself when evaluating medical research? #patientchat
Joe Babaian @JoeBabaian
@LAlupusLady @patientchat @MMaxwellStroud @MandiBPro @JohnSharp @Colin_Hung @nickisnpdx Amanda! Humbled - quite a select group to be included with. In fact, it's you that motivates us! 💖 #patientchat
Kevin Freiert @K_SalemOaks
@patientchat A3: Does this make sense? If not, try to learn more to see if you need to change your mental model. If it still seems off, don’t accept it. Ask an expert to help you. #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Amanda @LAlupusLady
RT @JoeBabaian: @LAlupusLady @patientchat @MMaxwellStroud @MandiBPro @JohnSharp @Colin_Hung @nickisnpdx Amanda! Humbled - quite a select gr…
AutonomicRN© @AutonomicRN
So true! #patientchat https://t.co/PE85l9JNtv
Your GPS Doc, LLC @yourgpsdoc
RT @AutonomicRN: T2: I go online to multiple sources @RareDiseases @NIH @Medscape are all great sources for information. Also https://t.co/…
Mighty Casey Quinlan @MightyCasey
THIS. ALL. DAY. ⇓⇓⇓⇓ #patientchat #science #Healthliteracy https://t.co/LvlSaj19z3
Barby Ingle 📣 @BarbyIngle
T3: Did study ask a focused questions Does the ?s addressed by research pertain 2 PT pop needed Were appropriate inclusion criteria used Do results also include # of PTs that failed study or was their data removed? Will the results help PTs get better access IRL? #PatientChat https://t.co/HyFShJDEbM
PatientOrator @PatientOrator
T2: Beyond doctors, #patients can find reliable information on medical research from credible internet sources such as #NIH #SagePublication......etc #patientchat https://t.co/meCNma4pBq
AutonomicRN© @AutonomicRN
@beth_morton That really is a wonderful way to get insights. #patientchat
Bingle @TheBingle
@patientchat T2 Reliable is key word. Some Drs. are not reliable.Much info on diseases in "infancy" can be wrong. Even major Breaking News can be deceitful. Patient beware! Look up everything and trust yourself to decipher along w/real ethical professionals #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T3: Did study ask a focused questions Does the ?s addressed by research pertain 2 PT pop needed Were appropriate inclusion…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T3: Did study ask a focused questions Does the ?s addressed by research pertain 2 PT pop needed Were appropriate inclusion…
Dr. Dorrie Cooper @sittingpretty61
I am sliding in late here having some tech issues but will try to do my best. I am a psychologist, educator, and I have cartilage malformity. #patientchat
Nigel H @Crohnoid
T2 In the UK we have #NICE (National Institute for Clinical Excellence) and I usually turn to their website for good information on treatments and treatment pathways in the #NHS #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T3: Did study ask a focused questions Does the ?s addressed by research pertain 2 PT pop needed Were appropriate inclusion…
Patient Empowerment @power4patients
@rheumpatient @jamienholloway Agreed. Here are a few tips for "Reading Beyond the Headline" https://t.co/3aXalpgaZs @JBBC #patientchat
Kevin Freiert @K_SalemOaks
Yes. Studies that ask too many questions or are unfocused are unlikely to give you good info. #patientchat https://t.co/TDMUDnfsjX
Alan Brewington @abrewi3010
T2 asking chats like #patientchat #medx #wtfix #wegohealthchat. Leaders in these chats will know or have idea where to ask.
ShereeseM, MS/MBA @ShereesePubHlth
T3. Is it a reliable entity? Is it peer-reviewed? Has it been challenged by any other research? Does it apply to my situation #PrecisionMedicine #patientchat https://t.co/toOKsHtrEC
Geeky Fox @TechKitsune
Look for multiple sources with the same answer. Make sure they are reputable websites! As a #contentcreator it is my job to make sure it's as accurate as can be. But sometimes people fall in to opinions rather than facts! #patientchat
Jamie Holloway, PhD @jamienholloway
T3: Do the data support the conclusions? What is the impact of the research on patients? What is the next step? #patientchat
Your GPS Doc, LLC @yourgpsdoc
T3: Does this study apply to me? Do I share characteristics (and not just the disease) with those who were studied? Was this treatment compared to existing therapies or just a placebo? #patientchat https://t.co/oRqrPfIj44
Patient Empowerment @power4patients
RT @patientchat: T3: What are some of the questions to ask yourself when evaluating medical research? #patientchat
Ken Taylor @KenRayTaylor
T3: What stage is the research in? Who does it help the most? Can it help more than 1 disease? Who is funding it? Are there clinical trials? #patientchat https://t.co/E0pwRoZSV0
Barby Ingle 📣 @BarbyIngle
RT @K_SalemOaks: Yes. Studies that ask too many questions or are unfocused are unlikely to give you good info. #patientchat https://t.co/…
Amanda @LAlupusLady
T3 Who did the research? Who funded/paid for the research? How will this improve/change current treatment protocol? How big was the sample study? #patientchat https://t.co/KYULaEkJbs
Kevin Freiert @K_SalemOaks
A3: Did they pick the right population? Do the participants reflect your situation or condition? Does it apply to you? #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Nigel H @Crohnoid
@rheumpatient @jamienholloway ..and unfortunately sometimes this reporting is by the very charities that are there to help sufferers of a particular condition #patientchat
ChronicallyJess @chronicallyjess
A2: patients can typically also find research on websites for associations/foundations/groups related to their disease, like @CrohnsColitisFn , for example (sorry I’m late joining!) #patientchat https://t.co/bHma4KiUDb
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: @rheumpatient @jamienholloway Agreed. Here are a few tips for "Reading Beyond the Headline" https://t.co/3aXalpgaZs @JB
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T3: What stage is the research in? Who does it help the most? Can it help more than 1 disease? Who is funding it? Are the…
AutonomicRN© @AutonomicRN
T3: Is it biased especially if sponsored by #pharma? How current is it? Could this benefit me? Credible sources and accurate data with multiple study subjects #patientchat
Dr. Dorrie Cooper @sittingpretty61
I frequently read whatever I can that will improve my experience as a patient and consumer of health services. I am an advocate and challenges protocols before individual differences. #patientchat
The Advocate Is In @TheAdvocateIsIn
T3: Who conducted the research, were patients involved in the creation of the study (not just as subjects)? Dies it seek to address an actual problem or what researchers (not patients) perceive as a problem? #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T3: What stage is the research in? Who does it help the most? Can it help more than 1 disease? Who is funding it? Are the…
Beth Morton @beth_morton
T3: My big 3 are the design of the study – was it a randomized trial, for example. The sample size of patients that were included. And I not only want to know if they found statistically sig results, but the effect size or real-world implications of the effects. #patientchat
Bingle @TheBingle
@patientchat T3 Who, What, Where, When & How ... the answers can give clues. IMHO #patientchat
Alan Brewington @abrewi3010
T3 will this research raise my quality of life or the quality of life of my caregiving. #patientchat
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T3: What stage is the research in? Who does it help the most? Can it help more than 1 disease? Who is funding it? Are the…
Jamie Holloway, PhD @jamienholloway
T3: Also, if reading to validate something I've heard in a headline-- are the researcher's conclusions the same as the headline? When it's no, then I usually work to find how they got the headline based on the data so I can explain later. #patientchat
Kevin Freiert @K_SalemOaks
A3: Was there an adequate control? This means, did they compare the new treatment with something else (placebo or another medicine) to give you context? #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Amanda @LAlupusLady
RT @ChronicallyJess: A2: patients can typically also find research on websites for associations/foundations/groups related to their disease…
Mary MACK @MaryOCMack
T3 What was learned? #patientchat
AutonomicRN© @AutonomicRN
@ChronicallyJess @CrohnsColitisFn It's never too late to hop on! #patientchat
AutonomicRN© @AutonomicRN
@LAlupusLady I think we both are on the exact same train of thought! #patientchat
Kevin Freiert @K_SalemOaks
A3: If the study showed “statistical significance”, does the actual difference make a meaningful difference to the patient participants? #patientchat #patienteducation #pharma #patientengagement @SalemOaks https://t.co/nwb8dtKykr
Vera Rulon FAHIMA @vrulon
@K_SalemOaks @SalemOaks Great questions. It comes down to the individual - if the research relates and is applicable #patientchat
ChronicallyJess @chronicallyjess
A3: how did researchers define “success” in the outcomes? Is it self-reported or clinical markers? This is huge when evaluating small studies that make the rounds on the webs - often just small groups of self-reported “improvements” which may not be helpful at all. #patientchat https://t.co/1X5360LNpA
ShereeseM, MS/MBA @ShereesePubHlth
@ebukstel of course but I don't want to seem obsessive, lol #htreads #patientchat
Dr. Dorrie Cooper @sittingpretty61
A2. Many conditions have publications and websites like @ArthritisFdn and disability organizations provide many facts regarding assistive devices. I like #WebMD very much for solid medical information.#patientchat
Rheumatoid Patient @rheumpatient
@abrewi3010 Journals charge for access. As a researcher you have to pay quite a lot to publish as 'open access' and the funding is not always there for this, especially difficult if you are self-funding your project. Some journals don't publish open access at all. #patientchat
Amanda @LAlupusLady
RT @AutonomicRN: @LAlupusLady I think we both are on the exact same train of thought! #patientchat
Dr. Dorrie Cooper @sittingpretty61
RT @BarbyIngle: I am @BarbyIngle, best selling author on pain topics, #CheerleaderofHOPE, Pres. of International Pain Foundation (iPain) @p
Vera Rulon FAHIMA @vrulon
@LAlupusLady Exactly - on same page! #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up… https://t.co/9TF218FlMj #patientchat
Kevin Freiert @K_SalemOaks
A3: One check - Did the author point out the weaknesses or potential concerns with their work (usually in the discussion)? #patientchat https://t.co/5e1snXCLfD
PatientOrator @PatientOrator
T3: Is the medical research from a credible source?Is it peer reviewed? 🗝️#patientchat https://t.co/TTVwrdAy0P
Amanda @LAlupusLady
RT @ChronicallyJess: A3: how did researchers define “success” in the outcomes? Is it self-reported or clinical markers? This is huge when…
Dr. Dorrie Cooper @sittingpretty61
@BarbyIngle @powerofpain I followed you and would love more information about what you do! #PatientChat
Amanda @LAlupusLady
RT @sittingpretty61: A2. Many conditions have publications and websites like @ArthritisFdn and disability organizations provide many facts…
Nigel H @Crohnoid
T3 Why was this research carried out? Was the result ever in doubt? Does it add anything to the body of knowledge? Don't want to sound cynical but - was this published simply so the author could see their name in print? #patientchat
Patient Chat @patientchat
RT @BarbyIngle: T3: Did study ask a focused questions Does the ?s addressed by research pertain 2 PT pop needed Were appropriate inclusion…
Kevin Freiert @K_SalemOaks
A3: What new questions does the research bring up? #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Dr. Dorrie Cooper @sittingpretty61
RT @patientchat: Join #patientchat Fri 3/23 1pmET as we discuss how to understand medical research https://t.co/Kg7qTs04nP https://t.co/Fri…
Patient Chat @patientchat
T4: What are the most important points to consider when reading medical research? #patientchat
Bingle @TheBingle
@vrulon @patientchat Change & Innovation does not always happen from "the researchers". It is exactly why patients should be included. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T4: What are the most important points to consider when reading medical research? #patientchat
Amanda @LAlupusLady
RT @patientchat: T4: What are the most important points to consider when reading medical research? #patientchat
Barby Ingle 📣 @BarbyIngle
Oh great, I followed you back! You can find more on my personal story and what I do at https://t.co/aBxf3J6RF6 and more on International Pain Foundation at https://t.co/sxETR2ejHa I will check you out after the chat :) #patientchat https://t.co/K7s2D9eKw9
Kevin Freiert @K_SalemOaks
A4: Remember the scientific method: Observation, Hypothesis, Experiment, Results, Conclusion (Repeat) #patientchat #patienteducation #pharma #patientengagement @SalemOaks https://t.co/F1iY11UjcW
Barby Ingle 📣 @BarbyIngle
T4: Who funded the research, could there be biases, were all who started the research included in the outcomes? Did they look at the right PT population? Are you reading the actual data or someone's interpretation in an article about the data? #PatientChat https://t.co/yBBF62g7bq
Kevin Freiert @K_SalemOaks
@SalemOaks A4: Articles follow a pattern: Introduction, Methods, Results, Discussion. Mirrors scientific method. #patientchat #patienteducation #pharma #patientengagement @SalemOaks
Nigel H @Crohnoid
T4 I always look at the number of participants. Sometimes results are based on ludicrously low numbers #patientchat
AutonomicRN© @AutonomicRN
At the end of the day all of the research in the world should come down to one thing #qualityoflife which is different for everyone. Spot on as usual, Alan! #patientchat https://t.co/yhoecxNYhB
Dr. Dorrie Cooper @sittingpretty61
A3. Publication validity and reliability. Scientific credentials Country of Origin What kind of study was it How many people participated What's the relevance for my cond'n #patientchat
Vera Rulon FAHIMA @vrulon
@TheBingle @patientchat YES!!! #patientchat
Geeky Fox @TechKitsune
T4: Did they show other studies and outcomes? What were they? Are they citing sources to their findings? What sources are they using? Is this just an opinion or is this factual somewhere? #patientchat
Grace Durbin @grace_durbin
RT @power4patients: T!: I met a woman yesterday who told me she's considered a "bad" patient because she reads & researches all she can bef…
Dr. Dorrie Cooper @sittingpretty61
RT @ShereesePubHlth: T2 On-line research and peer-reviewed journal offer reliable information and if you're a research junky, citations for…
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T4: Who funded the research, could there be biases, were all who started the research included in the outcomes? Did they lo…
Quin Turner @QuinlanTurner
@patientchat A3: Who's conducting the research and is the outcome the result of answering a question or is it fitting into a mold that best benefits those conducting the research #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: Oh great, I followed you back! You can find more on my personal story and what I do at https://t.co/aBxf3J6RF6 and more on…
Alan Brewington @abrewi3010
T4 is the research based on “how might we...” and not “what might we sell you?” #patientchat
Grace Durbin @grace_durbin
RT @patientchat: Today's #patientchat topic is Understanding Medical Research https://t.co/9TF218FlMj
Rheumatoid Patient @rheumpatient
@Crohnoid @jamienholloway 'Sufferer' is a word I dislike to describe myself. I know a lot of patients use it but it's not for me. #patientchat
Kevin Freiert @K_SalemOaks
A4: You do not need to know all the scientific mumbo-jumbo to make a difference. Read the Introduction, then the Discussion. Still have questions? Go back to details. #patientchat #patienteducation #pharma #patientengagement @salemoaks https://t.co/F1iY12bU4u
Amanda @LAlupusLady
A4 What is the research looking to find/discover? How can the quality of care be improved by this study? Does the research address a vital need that is missing? #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T4: Who funded the research, could there be biases, were all who started the research included in the outcomes? Did they lo…
PatientOrator @PatientOrator
@K_SalemOaks @SalemOaks Excellently stated! 👏 #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: Oh great, I followed you back! You can find more on my personal story and what I do at https://t.co/aBxf3J6RF6 and more on…
Lisa Davis Budzinski @lisadbudzinski
Please forgive my tardiness. Trying to catch up quickly #patientchat https://t.co/iVsSqUUFJq
Jamie Holloway, PhD @jamienholloway
T4: it's important look at things like model (cell culture, mouse, humans) and study size. Something that cures 10 mice isn't the magic bullet. #patientchat
Laurus @LaurusT001
RT @rheumpatient: @Crohnoid @jamienholloway 'Sufferer' is a word I dislike to describe myself. I know a lot of patients use it but it's not…
Nigel H @Crohnoid
T4 Most useful skill when reading a research paper is a healthy degree of scepticism. Question everything even if it has been "peer reviewed" #patientchat
Geeky Fox @TechKitsune
@BarbyIngle Did not think of funding! So important! #patientchat
Rheumatoid Patient @rheumpatient
T2: I find @medpagetoday quite good. #patientchat
Bingle @TheBingle
@Crohnoid I don't want to sound cynical but I do think it happens a lot simply to get Name in media. Or Idea??? Then Name..... #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
@jamienholloway Sample size is very important and often overlooked, sadly enough #patientchat
Ken Taylor @KenRayTaylor
T4: Reputation of the research co. How reliable is the study? How much participation was there? Who funded the research and what is the time line to completion. #patientchat https://t.co/7F1jXSDVWq
Rheumatoid Patient @rheumpatient
RT @power4patients: T!: I met a woman yesterday who told me she's considered a "bad" patient because she reads & researches all she can bef…
Mary MACK @MaryOCMack
T3 if it's an important study, should I assume my docs are current? or should I tell them what I've learned through my reading #patientchat
Heather McCullen @H_SalemOaks
A4 Context. It’s important to understand how the new information fits into the existing body of information. #patientchat
Your GPS Doc, LLC @yourgpsdoc
T4: Whether the findings are statistically significant, whether the study population includes patients like you, who paid for the study... #patientchat https://t.co/Lf7PcXHuzl
Vera Rulon FAHIMA @vrulon
@Crohnoid Couldn't agree more. Research the research. #patientchat
Alan Brewington @abrewi3010
@AutonomicRN Thank you 🙏 #patientchat
AutonomicRN© @AutonomicRN
T4: agree that scientific method must be the main ingredient with every study. Need to have a matching size control group to compare to the study group. But, also needs to have real-world applications (patients should be able to understand it without a dictionary) #patientchat
Kevin Freiert @K_SalemOaks
Open source articles are useful and usually sound – just be aware they may have skipped the peer-review hurdle. #patientchat #patienteducation #pharma #patientengagement @salemoaks https://t.co/FF0eiGOX0V
Your GPS Doc, LLC @yourgpsdoc
RT @Crohnoid: T4 Most useful skill when reading a research paper is a healthy degree of scepticism. Question everything even if it has been…
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T4: Reputation of the research co. How reliable is the study? How much participation was there? Who funded the research a…
Mighty Casey Quinlan @MightyCasey
RT @jamienholloway: T3: Do the data support the conclusions? What is the impact of the research on patients? What is the next step? #pati
Patient Empowerment @power4patients
T4: Check out this blog post that helps demystify scientific and medical & scientific papers https://t.co/3zuDmyXwih @JBBC #patientchat
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T4: Reputation of the research co. How reliable is the study? How much participation was there? Who funded the research a…
Jamie Holloway, PhD @jamienholloway
Ah yes! I tend to think I'm a born skeptic, but really, I'm probably an academically trained skeptic! Always question everything. Nothing is ever as good as the author wants you to believe! #patientchat https://t.co/XqYX2zqqJ5
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: Oh great, I followed you back! You can find more on my personal story and what I do at https://t.co/aBxf3J6RF6 and more on…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T4: Who funded the research, could there be biases, were all who started the research included in the outcomes? Did they lo…
Carly by Nature @SynceNerd_Carli
A4: It's important that the research has a significant impact on patients. Outcomes are important and if data can't be translated into something meaningful to patient lives, then it does a disservice to the population it's intending to help. #PatientChat
Alan Brewington @abrewi3010
T4 once again quality of life is the best place to start from when looking at medical research. #patientchat
The Advocate Is In @TheAdvocateIsIn
RT @power4patients: T4: Check out this blog post that helps demystify scientific and medical & scientific papers https://t.co/3zuDmyXwih @J
Heather McCullen @H_SalemOaks
RT @Crohnoid: T4 Most useful skill when reading a research paper is a healthy degree of scepticism. Question everything even if it has been…
ChronicallyJess @chronicallyjess
RT @AutonomicRN: T4: agree that scientific method must be the main ingredient with every study. Need to have a matching size control group…
Vera Rulon FAHIMA @vrulon
@SynceNerd_Carli Spot on #patientchat
Becky Brandt RN @bbhomebody
@abrewi3010 👏👏👏👏👏 Yes! #patientchat
AutonomicRN© @AutonomicRN
I've brought research with me to appointments or have sent them messages with links to the information that I think is pertinent. My research has helped my care, one doctor wasn't even going to mention other treatments from studies and I forced the issue. #patientchat https://t.co/h6IFjHnbyn
Mighty Casey Quinlan @MightyCasey
T3: One of the things I track regularly (I'm on their email list) is @RetractionWatch - best BS detection antenna array I know. #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up… https://t.co/9TF218FlMj #patientchat
ShereeseM, MS/MBA @ShereesePubHlth
RT @MightyCasey: T3: One of the things I track regularly (I'm on their email list) is @RetractionWatch - best BS detection antenna array I…
Your GPS Doc, LLC @yourgpsdoc
RT @MightyCasey: T3: One of the things I track regularly (I'm on their email list) is @RetractionWatch - best BS detection antenna array I…
Alan Brewington @abrewi3010
@bbhomebody 🙏🙏🙏🙏🙏🙏🙏 #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T4: Reputation of the research co. How reliable is the study? How much participation was there? Who funded the research a…
Dr. Dorrie Cooper @sittingpretty61
A4. Do these results relate to actual patients? Is there correlational condition between findings and results that is did they prove something and what were the conditions of the study? Are the findings plausible? #patientchat
Patient Chat @patientchat
T5: What are your tips for bringing up medical research with doctors? #patientchat
Patient Empowerment @power4patients
T4: Check out this blog post that helps demystify scientific & medical papers https://t.co/3zuDmyXwih @JBBC #patientchat
Dr. Dorrie Cooper @sittingpretty61
RT @rheumpatient: @jamienholloway You can't rely on media reporting. In our recent study we found many sensationalised articles, and that r…
Patient Empowerment @power4patients
RT @patientchat: T5: What are your tips for bringing up medical research with doctors? #patientchat
ChronicallyJess @chronicallyjess
@MaryOCMack Never assume docs are current - there is SO much out there for research. Consider yourself part of a doc/patient research team that brings information to the appointments jointly. Attacking solutions together. Two heads (or more) are better than one! #patientchat
Bingle @TheBingle
@Crohnoid T4 The most insulting thing in medicine is a Dr. calling a patient crazy bc they still insist something's wrong even when tests show nothing wrong. Question Drs. that don't listen & respect patients. And be skeptical! #patientchat
Mary MACK @MaryOCMack
T4. What is the pig picture and does it change or introduce a new management plan for my and my family's health issue #patientchat
Barby Ingle 📣 @BarbyIngle
T5: I bring a copy of actual data highlighted w ?s & comments, Ask provider 2 look it over & then bring it up again at next appt after they have chance to look at it 30days should be enough 4 them to eval & look into sim studies, ask other providers & PT's as needed #PatientChat https://t.co/Rf6SWJztGj
Dr. Dorrie Cooper @sittingpretty61
RT @AutonomicRN: T4: agree that scientific method must be the main ingredient with every study. Need to have a matching size control group…
AutonomicRN© @AutonomicRN
@lisadbudzinski I wondered where you were! Glad you're here! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @AutonomicRN: I've brought research with me to appointments or have sent them messages with links to the information that I think is per…
Vera Rulon FAHIMA @vrulon
@AutonomicRN That's key. Our doctor's can't know everything that is out there. We have a vested interest in knowing and learning about all our options. #patientchat
Geeky Fox @TechKitsune
T5: This can be hard depending on the doctor. Bring your research and say you found this and would like an opinion. A great doctor will not tell you you're dumb, instead they may explain the why and why not. Your care is important to them! #patientchat
Nigel H @Crohnoid
@SynceNerd_Carli PPI is now a crucial part of any research project and in UK, funding will be difficult to raise unless you can show how #PPI is being implemented #patientchat
Jamie Holloway, PhD @jamienholloway
T5: Email ahead of the visit: I read this article, wanted to talk about whether it applies to me... Gives them time to look at it and be prepared to discuss. #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @power4patients: T4: Check out this blog post that helps demystify scientific & medical papers https://t.co/3zuDmyXwih @JBBC #patientchat
Kevin Freiert @K_SalemOaks
A5: Respect their professionalism (until proved otherwise). Ask what latest research they are reading this week. Show interest. #patientchat #patienteducation #pharma #patientengagement @SalemOaks https://t.co/CaPOL23wiY
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T5: I bring a copy of actual data highlighted w ?s & comments, Ask provider 2 look it over & then bring it up again at next…
Heather McCullen @H_SalemOaks
@SynceNerd_Carli I have some pushback on that. Sometimes, most of the time, important changes happen in baby steps. Even if the conclusions seem small it’s still important. #patientchat
ChronicallyJess @chronicallyjess
RT @LAlupusLady: A4 What is the research looking to find/discover? How can the quality of care be improved by this study? Does the research…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T5: I bring a copy of actual data highlighted w ?s & comments, Ask provider 2 look it over & then bring it up again at next…
Vera Rulon FAHIMA @vrulon
@power4patients @JBBC Link isn't working for me... :( #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T5: I bring a copy of actual data highlighted w ?s & comments, Ask provider 2 look it over & then bring it up again at next…
Lisa Davis Budzinski @lisadbudzinski
@AutonomicRN Had a minor emergency to take care of ✨ #patientchat
AutonomicRN© @AutonomicRN
@vrulon Exactly, they already have so much on their plates! #patientchat
Alan Brewington @abrewi3010
T5 talk to doctors like you would want to be talked too. Doctors are experts too which means communication is key #patientchat
Carly by Nature @SynceNerd_Carli
A2: Patients can often access Journal articles online (and even by mail if you subscribe to them via membership in some orgs.) The biggest issue is access. A lot of articles are not open source and are behind a pay wall. I'd love to see this change #PatientChat
Kevin Freiert @K_SalemOaks
@SalemOaks A5: Take baby steps into their waters. Ask them about literature. Show them literature and ask for an opinion. Bring them new literature. #patientchat
Dr. Yasmin 🌴 @doctoryasmin
RT @patientchat: T5: What are your tips for bringing up medical research with doctors? #patientchat
Rheumatoid Patient @rheumpatient
T3: After reading the abstract, if I've decided it's worth reading on, I usually jump to the end to read about funding and conflicts of interest. Helps me then put the rest of the article into context. #patientchat
AutonomicRN© @AutonomicRN
@lisadbudzinski Hope everything is okay #patientchat
Bingle @TheBingle
@abrewi3010 T4 Great point! #patientchat
Amanda @LAlupusLady
A5 whether I bring it w/ me to an appointment or email my Drs. so they can read on their time, it is esp. cool when the Dr sends me an email w/ a research link. #patientchat https://t.co/QGoYridohe
Vera Rulon FAHIMA @vrulon
@patientchat T5: First and foremost - develop an open relationship with your doctor #patientchat
Kevin Freiert @K_SalemOaks
A5: Ask them to teach you – and then show you are the best student they have ever had. #patientchat https://t.co/CaPOL23wiY
The Advocate Is In @TheAdvocateIsIn
T5: I usually don't. 90% of my providers are st teaching hospitals. If I see something pertinent I will ask and trust them to tell me if it's BS, but more often than not, they bring new research to me. #patientchat
Becky Brandt RN @bbhomebody
@jamienholloway Great idea! #patientchat
Becky Brandt RN @bbhomebody
RT @jamienholloway: T5: Email ahead of the visit: I read this article, wanted to talk about whether it applies to me... Gives them time to…
Your GPS Doc, LLC @yourgpsdoc
T5: Patients should always feel comfortable talking with their doctors about everything, including research. A nice lead-in is, "I saw this study and thought it was pertinent to my condition. I would love to discuss it with you." #patientchat https://t.co/XC2bfhvzXo
Beth Morton @beth_morton
T5.A: This has been tricky for me in the past. I’ve had to find ways to do it so that my doctors don’t feel I’m stepping on their toes. I often explain my research background and how I’ve really turned my interest inwards. #patientchat
Beth Morton @beth_morton
T5.B: Like others have said, I've learned not to assume doctors have time to stay up to date on research. I buffer the convo by saying I just want to be sure I’m leaving no stone unturned when it comes to my own treatment plan. #patientchat
Beth Morton @beth_morton
T5.C: I will often print out an article or abstract and bring it with me, highlight the main points in a sentence or two, and then have my main “ask” for my doctor ready. #patientchat
Patient Empowerment @power4patients
@vrulon @JBBC Hope this works for you... https://t.co/vhzriZpMPC #patientchat
Your GPS Doc, LLC @yourgpsdoc
@K_SalemOaks I love this approach! #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 Yes, because it’s like the legal field; you need to locate the expert findings to use in citations for credibility #patientchat https://t.co/KhxyUF1E11
Vera Rulon FAHIMA @vrulon
@power4patients @JBBC Yes! This link works!! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @vrulon: @patientchat T5: First and foremost - develop an open relationship with your doctor #patientchat
Alan Brewington @abrewi3010
RT @vrulon: @patientchat T5: First and foremost - develop an open relationship with your doctor #patientchat
Amanda @LAlupusLady
A5 most patients should tread carefully as some Drs. may not be open to having ePatients share, but I know sharing is important. #patientchat
AutonomicRN© @AutonomicRN
T5: Sometimes I'll ask if they've heard of it. If not then I will give information. My PCP is phenomenal in this area. He always does research at night! #patientchat
Dr. Dorrie Cooper @sittingpretty61
A4. If you don't understand the study then ask your doctor or specialist to explain the study and inquire about new methods of treatment, new medications, and final results. Demand info about side effects of treatment protocols. #patientchat
Ken Taylor @KenRayTaylor
T5: I ask the Dr if he has any knowledge with the specific research. I think its good for both parties so its on the radar the next time it comes up there will be a reason to obtain the information and become more knowledgeable. #patientchat https://t.co/h0wbwG6PbB
Dr. Dorrie Cooper @sittingpretty61
RT @rheumpatient: T3: After reading the abstract, if I've decided it's worth reading on, I usually jump to the end to read about funding an…
The Advocate Is In @TheAdvocateIsIn
T5: For me, providers keeping up with the latest research is keeping up their end of the bargain. #patientchat
Quin Turner @QuinlanTurner
@patientchat A5: Never hesitate to open a discussion on research. Your doc may not be able to to get into a 3 hour convo about it but they should at least provide their thoughts. Using research to challenge one of their ideas is also ok just be sure not to be too aggressive #patientchat
AutonomicRN© @AutonomicRN
@jamienholloway great idea #patientchat
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T5: I ask the Dr if he has any knowledge with the specific research. I think its good for both parties so its on the rada…
Carly by Nature @SynceNerd_Carli
A1: I absolutely read medical research pubs. It's important to me to stay abreast of the latest research related to my illness. My care is a collaborative effort. All members of my team, including me, need to be current on the latest data. #PatientChat
PatientOrator @PatientOrator
T4: Some important points to consider when reading medical research are; sample size, year research was conducted, population studied, and that results of a study may not be applicable to all as each patient's condition is unique and diseases, illnesses may differ. #Patientchat https://t.co/2Dt356QFaf
International Pain Foundation® @powerofpain
RT @KenRayTaylor: T5: I ask the Dr if he has any knowledge with the specific research. I think its good for both parties so its on the rada…
Patient Empowerment @power4patients
RT @vrulon: @AutonomicRN That's key. Our doctor's can't know everything that is out there. We have a vested interest in knowing and learnin…
Kevin Freiert @K_SalemOaks
@sittingpretty61 Curiosity is the antidote to animosity and conflict #patientchat
ChronicallyJess @chronicallyjess
A5: we shouldn’t have to, but mindful approach is key. I preface convo by saying “I love being part of a team approach to care, so I wanted to contribute a few thoughts”. I thoroughly read the study first + come prepared to discuss main Qs or reasons it may help me. #patientchat https://t.co/jchxdW67r6
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T5: I ask the Dr if he has any knowledge with the specific research. I think its good for both parties so its on the rada…
Vera Rulon FAHIMA @vrulon
@sittingpretty61 So agree re: #sideffects #patientchat
Rheumatoid Patient @rheumpatient
RT @TheAdvocateIsIn: T3: Who conducted the research, were patients involved in the creation of the study (not just as subjects)? Dies it se…
Mighty Casey Quinlan @MightyCasey
T4: Author credentials; did they ask AND ANSWER a question that matters; did they move the cheese (the dreaded surrogate end points syndrome). #patientchat
Bingle @TheBingle
@patientchat T5 Know who to trust. I trust my dentist. I trust my heart Dr. etc. But in spite of that then do your own research! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @abrewi3010: T5 talk to doctors like you would want to be talked too. Doctors are experts too which means communication is key #patientc
Abhay Gupta @imabhaygupta
RT @patientchat: T5: What are your tips for bringing up medical research with doctors? #patientchat
Mary MACK @MaryOCMack
T5. I've emailed my docs studies. #patientchat
Patient Chat @patientchat
Topic 6 (T6:) coming up… https://t.co/9TF218FlMj #patientchat
Amanda @LAlupusLady
RT @ChronicallyJess: A5: we shouldn’t have to, but mindful approach is key. I preface convo by saying “I love being part of a team approach…
Nigel H @Crohnoid
T5 One way is to use those magic words "Can you help me?" Then ask if they can help you to understand this research you've been reading. That way the HCP doesn't feel threatened and you are asking for their expert advice! #patientchat
Kevin Freiert @K_SalemOaks
A5: Think like a doctor. What options are best for this patient? Ask for comparisons – and the literature behind them. #patientchat #doctorposes https://t.co/CaPOL23wiY
Carly by Nature @SynceNerd_Carli
A1: I'm also a Science nerd (peep the twitter handle 🙂) so I read up stuff not related to my own illness for kicks and giggles. Plus, I love learning new things. #PatientChat
Heather McCullen @H_SalemOaks
RT @K_SalemOaks: @sittingpretty61 Curiosity is the antidote to animosity and conflict #patientchat
AutonomicRN© @AutonomicRN
That for sure has to be the priority, if there isn't a good relationship, then chances are there will be resistance #patientchat https://t.co/RTKUBrYNz2
Lisa Davis Budzinski @lisadbudzinski
T2 Google Scholar, plus many twitter chats such as #hcldr #PWChat There are far more places nowadays than in prior years #patientchat https://t.co/kSq56qrlXI
ChronicallyJess @chronicallyjess
RT @vrulon: @AutonomicRN That's key. Our doctor's can't know everything that is out there. We have a vested interest in knowing and learnin…
Dr. Dorrie Cooper @sittingpretty61
A5. Speak It! Print It! Ask It! What publications do they subscribe to for their updates? Tweet It Research! Research! Research! #patientchat
Patient Chat @patientchat
T6: Other than enrolling in research, what other ways can empowered patients get involved with research? #patientchat
Rheumatoid Patient @rheumpatient
@bottomline_ibd @Crohnoid @jamienholloway Yes, I prefer being called a 'patient' but then some say we should be called 'service users' which is another term I'm not so keen on.#patientchat
Patient Empowerment @power4patients
RT @ChronicallyJess: A5: we shouldn’t have to, but mindful approach is key. I preface convo by saying “I love being part of a team approach…
Kevin Freiert @K_SalemOaks
@SynceNerd_Carli A1: While I too focus on medical journals, sometimes Science or Nature has something interesting on other topics. #patientchat
Vera Rulon FAHIMA @vrulon
@AutonomicRN Exactly. #patientchat if can't build a relationship for whatever reason - seek a new doctor if you can #patientchat
Mighty Casey Quinlan @MightyCasey
T5: I bring up my research bent early and often with my clinical team(s). Primary care in partic; specialty as necessary; all in service of communicating my outcome preference for [whatever]. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T6: Other than enrolling in research, what other ways can empowered patients get involved with research? #patientchat
PatientOrator @PatientOrator
T5: Open dialogue is key.Patients should be able to converse about alternative treatments or medical findings to their care provider with ease #patientchat https://t.co/ORpsCUvugp
Ken Taylor @KenRayTaylor
T7: Clinical trials are a great way for empowered patients to get involved because it makes them a part of the research. #patientchat https://t.co/BRmLCaQ25X
Barby Ingle 📣 @BarbyIngle
T6: Patients can also be empowered by speaking with their providers to see if any new options at health conferences have come up that may help the PT live better daily lives. There are also some great apps, advocacy groups and volunteer efforts that be helpful! #PatientChat https://t.co/J4Stz2I2Gf
FrancieGrace @FrancieGrace
RT @LAlupusLady: T3 Who did the research? Who funded/paid for the research? How will this improve/change current treatment protocol? How bi…
Kevin Freiert @K_SalemOaks
A6: Learn the medicines development process and never stop learning. #patientchat #patienteducation #pharma #patientengagement @SalemOaks https://t.co/5aJdLM3RP6
Rheumatoid Patient @rheumpatient
RT @K_SalemOaks: A3: If the study showed “statistical significance”, does the actual difference make a meaningful difference to the patient…
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: T7: Clinical trials are a great way for empowered patients to get involved because it makes them a part of the research.…
FrancieGrace @FrancieGrace
RT @power4patients: T!: I met a woman yesterday who told me she's considered a "bad" patient because she reads & researches all she can bef…
Your GPS Doc, LLC @yourgpsdoc
@ChronicallyJess I disagree. Not all patients are open to or interested in discussing medical research, so it's not necessarily the norm for doctors to include this in routine conversations with patients. Of course, there are situations where the doctor should bring it up. #patientchat
Ken Taylor @KenRayTaylor
RT @BarbyIngle: T6: Patients can also be empowered by speaking with their providers to see if any new options at health conferences have co…
Jamie Holloway, PhD @jamienholloway
T6: Find organizations that work in research advocacy-- some at research institutions. Also look for programs that include advocates in the research review process. (DOD CDMRP includes advocates in funding decisions) #patientchat
Ken Taylor @KenRayTaylor
T6: Clinical trials are a great way for empowered patients to get involved because it makes them a part of the research. #patientchat https://t.co/BRmLCaQ25X
Bingle @TheBingle
@patientchat T6 They can do their own research & find answers. #patientchat
AutonomicRN© @AutonomicRN
T6: just keeping up on current treatments and recommendations is a very involved process #patientchat
International Pain Foundation® @powerofpain
RT @BarbyIngle: T6: Patients can also be empowered by speaking with their providers to see if any new options at health conferences have co…
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: T6: Patients can also be empowered by speaking with their providers to see if any new options at health conferences have co…
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T6: Clinical trials are a great way for empowered patients to get involved because it makes them a part of the research.…
Amanda @LAlupusLady
A6 Clinical trials. Clinical trials. Clinical trials. Patients are the keys to research and clinical trials are the keys to research. Unlock the potential of the patient in healthcare. #patientchat https://t.co/1eJs9Kb4Lj
Carly by Nature @SynceNerd_Carli
A5: ProTip: Just do it! If you find time during your consult, ask if they've read the recent publication on "XYZ". I've found that openly discussing your interest in related med research opens the door for better collaborative care & communication. #PatientChat
Vera Rulon FAHIMA @vrulon
T6: Participate in study design - research should be based on real life experience e.g. #beyondthepill #patientchat
Margaret Fleming @mlsfleming2
RT @MightyCasey: T1: I do, but am often frustrated by paywalls. Seems like the last bastion of the patriarchy, "you're just a citizen, you…
The Advocate Is In @TheAdvocateIsIn
T6: be involved with the conception and execution of the study. At every step, really, maybe even in the earliest planning stages. Researchers can't address our priorities if they don't know them. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T3 Analyze each section carefully; was it random, how many studies, how many people; double blind study, and so much more #patientchat https://t.co/RVwjUIRuZj
Dr. Dorrie Cooper @sittingpretty61
I can so relate to this because I work and I have a disability. My disability is a full-time job, most people have no idea! #PatientChat #Research #MedicalLiteracy https://t.co/1avpglDcvq
Beth Morton @beth_morton
T6: Advocate. Work with some of the foundations for our particular diseases to try to find ways to inform their policy and research agendas, especially if they award research grants. Get involved in advocacy days on Capitol Hill, etc., asking for greater funding. #patientchat
Becky Brandt RN @bbhomebody
@Crohnoid Agreed! Starting from a place of mutual respect. 👍 #patientchat
Becky Brandt RN @bbhomebody
RT @Crohnoid: T5 One way is to use those magic words "Can you help me?" Then ask if they can help you to understand this research you've be…
Mighty Casey Quinlan @MightyCasey
[sidebar] GEEK ALERT: This just in from Natl Institute of Standards & Technology https://t.co/YmblFBXP6a #patientchat
AutonomicRN© @AutonomicRN
@rheumpatient @bottomline_ibd @Crohnoid @jamienholloway Service users kind of makes us sound like somebody sitting at a desk or utilizing a service. I'm not really keen on that either. #patientchat
Kevin Freiert @K_SalemOaks
A6: Connect with a pharma company and volunteer to meet with or even join their drug development team and offer your insights. Funny enough, they may not know where to find you. #patientchat https://t.co/5aJdLM3RP6
Mary MACK @MaryOCMack
T6 create a large patient group with the same condition and share an idea with a Biotech Company for a clinical trial. #patientchat
Heather McCullen @H_SalemOaks
@vrulon @AutonomicRN Sometimes this is easier said than done. I wish it was possible for everyone to fire their doctor if they weren’t receiving the relationship they deserve. #patientchat
Nigel H @Crohnoid
T6 The #PPI (Patient and Public Involvement) role is great for getting involved in research projects if you don't want to physically take part in the trial. It provides a patient input to clinical team #patientchat
Vera Rulon FAHIMA @vrulon
@LAlupusLady And more and more people are discussing trials - the traditional clinical trial is changing - blinding?!?!? #patientchat
FrancieGrace @FrancieGrace
RT @MightyCasey: T1: one of my goals with reading research is to translate it for non-scientist humans. BTW, wrote a post for @power4patien
Alan Brewington @abrewi3010
T6 use your own platform to pass on opportunities that might cross your path. I have no problem with learning about a research opportunity from a cancer patient for example. No silos, we are all here together #patientchat
Geeky Fox @TechKitsune
T6: Sometimes testing yourself and bringing results in can help. Test your theories against theirs (research) and bring it to your DR. for comparison and analysis! Do this WITH your DR under their supervision. #patientchat
The Advocate Is In @TheAdvocateIsIn
RT @MightyCasey: [sidebar] GEEK ALERT: This just in from Natl Institute of Standards & Technology https://t.co/YmblFBXP6a #patientchat
Rheumatoid Patient @rheumpatient
@Crohnoid I used to be on a research ethics committee. Sometimes we would see the same old recycled studies for students to do to get their masters and we would say this is not adding anything new, it is unethical to waste participants' time or worse take blood samples, etc. #patientchat
Carly by Nature @SynceNerd_Carli
A6: Reach out to companies, universities & facilities doing the research. Discuss if they have patient partners. If not, propose leading the way. If so, inquire about joining to give feedback. We should be included in every step of the research process. #PatientChat
Bingle @TheBingle
@PatientOrator T5 Quite honestly many Alternate Treatments may be frowned upon by your Dr. . They feel threatened IMHO. Not all but some will ignore/discourage any mention. #patientchat
Carly by Nature @SynceNerd_Carli
RT @rheumpatient: @Crohnoid I used to be on a research ethics committee. Sometimes we would see the same old recycled studies for students…
FrancieGrace @FrancieGrace
RT @TheAdvocateIsIn: T3: Who conducted the research, were patients involved in the creation of the study (not just as subjects)? Dies it se…
Your GPS Doc, LLC @yourgpsdoc
@ChronicallyJess Oh, sorry! You said “we shouldn’t have to...” Maybe I misunderstood? #patientchat
AutonomicRN© @AutonomicRN
@Crohnoid I kept thinking Proton Pump Inhibitor for PPI and I knew that wasn't right :) #patientchat
Carly by Nature @SynceNerd_Carli
RT @abrewi3010: T6 use your own platform to pass on opportunities that might cross your path. I have no problem with learning about a resea…
Dr. Dorrie Cooper @sittingpretty61
A6. I ask Doc's if they know of any research programs and teaching hospitals have clinical trials ocurring constantly. The @ArthritisFdn offers information as well as The American Cancer Society. #MedicalSleuth #Patientchat
Bingle @TheBingle
RT @vrulon: @AutonomicRN Exactly. #patientchat if can't build a relationship for whatever reason - seek a new doctor if you can #patientchat
Carly by Nature @SynceNerd_Carli
RT @Crohnoid: T6 The #PPI (Patient and Public Involvement) role is great for getting involved in research projects if you don't want to phy…
Rheumatoid Patient @rheumpatient
RT @AutonomicRN: @rheumpatient @bottomline_ibd @Crohnoid @jamienholloway Service users kind of makes us sound like somebody sitting at a de…
Dr. Dorrie Cooper @sittingpretty61
RT @jamienholloway: T6: Find organizations that work in research advocacy-- some at research institutions. Also look for programs that incl…
Becky Brandt RN @bbhomebody
@sittingpretty61 So true! It's hard to understand the depth of a disability without living it. #patientchat
Quin Turner @QuinlanTurner
@patientchat T6: Know what studies are taking place and how they may impact your health. As someone who has run through most available meds, I have to plan 2-3 moves ahead in the event my current meds stop working. My doc and I keep this convo going to best track trial results #patientchat
Your GPS Doc, LLC @yourgpsdoc
@ChronicallyJess So true! I agree 100% #patientchat
Carly by Nature @SynceNerd_Carli
RT @beth_morton: T6: Advocate. Work with some of the foundations for our particular diseases to try to find ways to inform their policy an…
FrancieGrace @FrancieGrace
RT @KenRayTaylor: T2: NIH and FDA are good places to find research on most things. Disease specific NonPfrofits like to share research with…
Vera Rulon FAHIMA @vrulon
@H_SalemOaks @AutonomicRN True - that's why "if you can" - are there instances where a doctor fires a patient? Just curious. Read an article that included a "Dr. Patient" letter from a doctor (reimbursement based on outcomes)... but I digress.... #patientchat
Rheumatoid Patient @rheumpatient
RT @TheBingle: @vrulon @patientchat Change & Innovation does not always happen from "the researchers". It is exactly why patients should be…
Carly by Nature @SynceNerd_Carli
RT @K_SalemOaks: Open source articles are useful and usually sound – just be aware they may have skipped the peer-review hurdle. #patientc
Carly by Nature @SynceNerd_Carli
RT @yourgpsdoc: T4: Whether the findings are statistically significant, whether the study population includes patients like you, who paid f…
Carly by Nature @SynceNerd_Carli
RT @KenRayTaylor: T4: Reputation of the research co. How reliable is the study? How much participation was there? Who funded the research a…
Alan Brewington @abrewi3010
T6 organize with nonprofit orgs involved in research. Will work hard for free usually but their is more than one type of reward. #patientchat
Beth Morton @beth_morton
@SynceNerd_Carli Love this idea. Have you done this? Had any success? I've been thinking about this myself. #patientchat
Dr. Dorrie Cooper @sittingpretty61
RT @MightyCasey: [sidebar] GEEK ALERT: This just in from Natl Institute of Standards & Technology https://t.co/YmblFBXP6a #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Mighty Casey Quinlan @MightyCasey
T6: Highly encourage folx to check out Patient Powered Research Networks (PPRNs) + Clinical Data Research Networks (CDRNs), both @PCORI efforts. #patientchat
AutonomicRN© @AutonomicRN
Getting involved with advocacy groups for clinical trials like @brkthrough_crew @antidote_me @CureClickTrials are really good starting places. Also @savvy_coop has opportunities for a lot of insight as well. #patientchat
FrancieGrace @FrancieGrace
RT @MightyCasey: [sidebar] GEEK ALERT: This just in from Natl Institute of Standards & Technology https://t.co/YmblFBXP6a #patientchat
Patient Empowerment @power4patients
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
ChronicallyJess @chronicallyjess
A6: stay current in developing research and get involved with legislation or advocacy to advance important work that may help further treat your illness. #patientchat https://t.co/g7FkMwQVFW
Barby Ingle 📣 @BarbyIngle
CT: Communication in research, patient engagement, and leadership is the key to better research, reimbursements, care coordination & improvements in chronic care #PatientChat https://t.co/s5UQCHK3tV
Nigel H @Crohnoid
@AutonomicRN @rheumpatient @bottomline_ibd @jamienholloway I don't like "service user". I'll go for "equal partner in managing my health" #patientchat
Patient Empowerment @power4patients
RT @sittingpretty61: A5. Speak It! Print It! Ask It! What publications do they subscribe to for their updates? Tweet It Research! Research…
Your GPS Doc, LLC @yourgpsdoc
https://t.co/hwoEGyGTv2 #patientchat https://t.co/vlea8akw4J
International Pain Foundation® @powerofpain
RT @BarbyIngle: CT: Communication in research, patient engagement, and leadership is the key to better research, reimbursements, care coord…
PatientOrator @PatientOrator
T6: Empowered #patients can get involved with research by; staying aware of new trends in research, keeping up to date with whats happening/ being in the know, social media sharing of data, advocating for underfunded researches around illnesse & diseases #patientchat https://t.co/doZ52vfyAw
Mighty Casey Quinlan @MightyCasey
@vrulon @H_SalemOaks @AutonomicRN I've heard numerous tales of "MD fires patient" stuff from autoimmune/rheum communities, partic when patient(s) try self-hacks based on their own research, or ask for tx approaches based on their own research. #patientchat
Bingle @TheBingle
@SynceNerd_Carli T6 A Caveat about Feedback..... People sometimes will take because they feel they're entitled. Esp if you are "just" a patient. #patientchat PS- The medical pro is a moron to think you can take PtExp away from the patient!
Dr. Dorrie Cooper @sittingpretty61
RT @BarbyIngle: CT: Communication in research, patient engagement, and leadership is the key to better research, reimbursements, care coord…
Rheumatoid Patient @rheumpatient
@Crohnoid It does depend on if the research is quantitative or qualitative. Sample size more important for the former than latter. You can still get meaningful data from fewer participants in a qual study. #patientchat
AutonomicRN© @AutonomicRN
@vrulon @H_SalemOaks I wouldn't think that a doctor would fire a patient over bringing up clinical trials or research. Honestly if they had that attitude, I probably would have fired them first. After all, it's my life and my treatment so I should have a say in what goes on. #patientchat
Becky Brandt RN @bbhomebody
T6 Patients can direct other patients to trials, research, good doctors, advocacy info & volunteer work etc. And on Twitter it happens SOOOOOO quickly. It's a huge bonus to have access to all these bright patient minds. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T4 Was the key point answered in the headline, does it support with scientific research, a surgical trial without controls, are there comparison groups #patientchat https://t.co/aRaT94JIxf
Ken Taylor @KenRayTaylor
RT @BarbyIngle: CT: Communication in research, patient engagement, and leadership is the key to better research, reimbursements, care coord…
Patient Empowerment @power4patients
RT @ChronicallyJess: A6: stay current in developing research and get involved with legislation or advocacy to advance important work that m…
ChronicallyJess @chronicallyjess
@yourgpsdoc So glad that you pointed out this discrepancy! 😊 #patientchat #conversationiskey
Patient Empowerment @power4patients
RT @MightyCasey: T6: Highly encourage folx to check out Patient Powered Research Networks (PPRNs) + Clinical Data Research Networks (CDRNs)…
AutonomicRN© @AutonomicRN
@Crohnoid @rheumpatient @bottomline_ibd @jamienholloway Love it! #patientchat
Bingle @TheBingle
RT @MightyCasey: T6: Highly encourage folx to check out Patient Powered Research Networks (PPRNs) + Clinical Data Research Networks (CDRNs)…
Becky Brandt RN @bbhomebody
@AutonomicRN @Crohnoid Lol. Me too Kim😀 #patientchat
Carly by Nature @SynceNerd_Carli
@beth_morton I have. Browsing sites is the first step. If you don't find any info, don't get discouraged, they may not list patient partnerships but may have them. If this is the case, have them consider making it known. Most ppl want to play an active role in improving care #PatientChat
iPain Living Magazine @iPainFoundation
RT @BarbyIngle: CT: Communication in research, patient engagement, and leadership is the key to better research, reimbursements, care coord…
Your GPS Doc, LLC @yourgpsdoc
@H_SalemOaks @vrulon @AutonomicRN I posted the link to a blog article I wrote on this topic, "5 Signs It May Be Time to Dump Your Doctor". I agree it can be very difficult. #patientchat
Ken Taylor @KenRayTaylor
CT: Research makes the world a better place. Research! Research! Research! Have a great day :) #patientchat https://t.co/FuCOtN15C9
Rheumatoid Patient @rheumpatient
@sittingpretty61 Not sure about country of origin. Plenty of good studies originate from outside the UK and USA. #patientchat
Autoimmune Diseases @autoimmune_re
RT @AutonomicRN: T3: Is it biased especially if sponsored by #pharma? How current is it? Could this benefit me? Credible sources and accura…
Bingle @TheBingle
Any disease/disability.... #patientchat https://t.co/2ZJ40yC1rM
Alan Brewington @abrewi3010
CT like in love, communication is key. We get more done and design better with how might we... vs a me vs the World approach. #patientchat
Vera Rulon FAHIMA @vrulon
@AutonomicRN @H_SalemOaks see @MightyCasey response #patientchat
PatientOrator @PatientOrator
@TheBingle Which unfortunately is not very #patientcentered #patientchat
Carly by Nature @SynceNerd_Carli
@K_SalemOaks Oh yes! I forgot to include. I subscribe to a few Sci pubs as well. #PatientChat
Barby Ingle 📣 @BarbyIngle
RT @KenRayTaylor: CT: Research makes the world a better place. Research! Research! Research! Have a great day :) #patientchat https://t.co/…
Rheumatoid Patient @rheumpatient
RT @QuinlanTurner: @patientchat A3: Who's conducting the research and is the outcome the result of answering a question or is it fitting in…
Alan Brewington @abrewi3010
RT @bbhomebody: T6 Patients can direct other patients to trials, research, good doctors, advocacy info & volunteer work etc. And on Twitte…
The Advocate Is In @TheAdvocateIsIn
RT @KenRayTaylor: CT: Research makes the world a better place. Research! Research! Research! Have a great day :) #patientchat https://t.co/…
Your GPS Doc, LLC @yourgpsdoc
RT @TechKitsune: T5: This can be hard depending on the doctor. Bring your research and say you found this and would like an opinion. A grea…
Lisa Davis Budzinski @lisadbudzinski
Please also see: https://t.co/RHeovXCDwh #patientchat
International Pain Foundation® @powerofpain
RT @KenRayTaylor: CT: Research makes the world a better place. Research! Research! Research! Have a great day :) #patientchat https://t.co/…
Amanda @LAlupusLady
CT Patients play an important role in healthcare research. We need to explore how each of us can share and participate in clinical trials. #patientchat impacting change. https://t.co/1TmXPDlQNH
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: CT: Research makes the world a better place. Research! Research! Research! Have a great day :) #patientchat https://t.co/…
Evan Ehrenberg @EvanEhrenberg
RT @KenRayTaylor: T4: Reputation of the research co. How reliable is the study? How much participation was there? Who funded the research a…
Patient Chat @patientchat
#patientchat is your community. Thanks for joining in today, please reach out to @power4patients or @patientchat anytime
Vera Rulon FAHIMA @vrulon
CT: people (patients) need to be at the heart of research - #participants #codesign #patientchat
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour #patientchat
AutonomicRN© @AutonomicRN
It isn't necessarily asking for tx approaches, sometimes it's just the casual "hey what do you think about this, is it something we could look into." I really think it depends on the provider and how it is brought up. Also the relationship is VERY key here. #patientchat https://t.co/QD5i1mzj43
Alan Brewington @abrewi3010
Ct there is no such thing as a bad/stupid question. Questions save lives and raise quality of life. #patientchat
Mighty Casey Quinlan @MightyCasey
@TheAdvocateIsIn @vrulon @H_SalemOaks @AutonomicRN Biggest issue there tho is that often the patient is stuck, partic if they live in an area without a lot of MD options in the specialty they need. #patientchat
Rheumatoid Patient @rheumpatient
@Crohnoid @AutonomicRN @bottomline_ibd @jamienholloway EPMH? Could catch on. #patientchat
Vera Rulon FAHIMA @vrulon
@LAlupusLady Again... same page ;) #patientchat
Your GPS Doc, LLC @yourgpsdoc
CT: Patients can and should be involved in reviewing medical research. Approach your doctors with respect but don't be afraid to bring studies to the appointment to launch important conversations. Also don't be afraid to ask questions about what you've read. #patientchat https://t.co/YksfcgilOB
Bingle @TheBingle
@AutonomicRN @vrulon @H_SalemOaks #1 answer.... Great point.... #patientchat
Alan Brewington @abrewi3010
RT @vrulon: CT: people (patients) need to be at the heart of research - #participants #codesign #patientchat
Lisa Davis Budzinski @lisadbudzinski
T5 First know your condition/conditions thoroughly so that you can speak with your healthcare team intelligently. So that when you bring up research you have that trust built in #patientchat https://t.co/UXWlPVcnlu
Becky Brandt RN @bbhomebody
@TheBingle Absolutely! I've become far more empathetic as a patient than I was before as a nurse. (But I was always kind 😉) #patientchat
Your GPS Doc, LLC @yourgpsdoc
@patientchat Thanks for hosting another wonderful #patientchat!
kevin bryant @educated_change
RT @beth_morton: T2: To find the latest research, I follow a bunch of #neurology & #migraine journals and advocacy/foundations on Twitter and subscribe to their newsletters; e.g., @MigraineRF and @HeadacheJournal #patientchat
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, April 6th at 10amPT | 1pmPT. Hope to see you there! https://t.co/n9wgI38yV9
Vera Rulon FAHIMA @vrulon
@MightyCasey @TheAdvocateIsIn @H_SalemOaks @AutonomicRN Sad. Any chance remote, virtual care might solve some of the problem? #patientchat
AutonomicRN© @AutonomicRN
CT: Really great discussion today about medical research and how to disseminate it. Also how to bring up or address with care team. Everyone has great ideas and responses! Can't wait for the next chat! As always, thanks everyone! #patientchat
Rheumatoid Patient @rheumpatient
@MaryOCMack Depends on their ego. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T5 (2) You haven’t much time so be helpful in highlighting areas of the research for the Dr to peruse & then read later. Also explain why you feel it pertains to your situation #patientchat https://t.co/UXWlPVcnlu
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Jamie Holloway, PhD @jamienholloway
Thanks to the #patientchat crew for a great discussion on medical research today!
Alan Brewington @abrewi3010
Ct doctors, providers, healthcare, patients are hurting, tired, scared. Knowledge combats all of this. So cut us some slack if our communication isn’t always the best please! #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @patientchat: The next Empowered #patientchat will be Friday, April 6th at 10amPT | 1pmPT. Hope to see you there! https://t.co/n9wgI38yV9
Beth Morton @beth_morton
CT: I hope doctors realize that many patients have moved far beyond the stereotyped "Dr. Google" research. That we really do follow the latest developments and can have an important role in its development. #patientchat
Vera Rulon FAHIMA @vrulon
@patientchat Singing off. Great chat!! Looking forward to the summary. #patientchat
Human Fertility @fertility_an
RT @AutonomicRN: T3: Is it biased especially if sponsored by #pharma? How current is it? Could this benefit me? Credible sources and accura…
Bingle @TheBingle
CT: There are many great people to learn from in chat rooms on Twitter. That goes for HCP's & patients. Much to decipher in research but keep pluggin' away! Thanks for chat! #patientchat
Alan Brewington @abrewi3010
RT @beth_morton: T2: Oh, yeah! Anytime there is a professional #heachache conference I tend to stalk #migraine doctors on Twitter and make…
Your GPS Doc, LLC @yourgpsdoc
RT @beth_morton: CT: I hope doctors realize that many patients have moved far beyond the stereotyped "Dr. Google" research. That we really…
AutonomicRN© @AutonomicRN
@MightyCasey @TheAdvocateIsIn @vrulon @H_SalemOaks I agree and there is a line that we walk. This definitely wouldn’t be anything that I would bring up in the first few visits while you are establishing trust and strengthening the relationship. #patientchat
Rheumatoid Patient @rheumpatient
@MaryOCMack I know it's a typo but 😂. #patientchat
Alan Brewington @abrewi3010
@beth_morton Twitter is a great equalizer. Titles don’t matter, ideas, conversation, and empathy do. #patientchat
Laurus @LaurusT001
RT @rheumpatient: @MaryOCMack I know it's a typo but 😂. #patientchat
Dr. Dorrie Cooper @sittingpretty61
RT @AutonomicRN: CT: Really great discussion today about medical research and how to disseminate it. Also how to bring up or address with c…
AutonomicRN© @AutonomicRN
@Crohnoid @rheumpatient @bottomline_ibd @jamienholloway Yeah, definitely try it! Let us know next time!! #patientchat
Carly by Nature @SynceNerd_Carli
@H_SalemOaks Yes, Absolutely."Impact" incl. large & small steps. My point is, if the investigator publishes data that doesn't move anything forward & results don't have some impact, it isn't useful to me as a patient. It's not their fault, of course, just the nature of science. #PatientChat
Quin Turner @QuinlanTurner
@patientchat CT: Reminded of the Mongersen trial. People had all of their hopes there. Research is incredibly important but patients need to make sure that, no matter what a doc may say, trials OFTEN fail. Pay attention but don't commit every ounce of hope on one thing #patientchat
Bingle @TheBingle
@bbhomebody I was going to ask if you were a Good Nurse or a Bad Nurse and now I know you're a Great Nurse! 😀 #patientchat
Rheumatoid Patient @rheumpatient
@Crohnoid @SynceNerd_Carli The problem is when researchers say they will involve patients just to get the funding and then either don't or not in a meaningful way. #patientchat
Beth Morton @beth_morton
@AutonomicRN @MightyCasey @TheAdvocateIsIn @vrulon @H_SalemOaks I can so relate to this thread. The careful balancing act I've played with docs because they are the one specialist for miles, yet don't appreciate a collaborative approach. #patientchat
Carly by Nature @SynceNerd_Carli
@rheumpatient @Crohnoid Yes! Must be meaningful engagement. #PatientChat
Rheumatoid Patient @rheumpatient
@jamienholloway I honestly don't think any of my docs would have the time to read it. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T6: https://t.co/MFwmnjmYxY I’ll list another reference since some of these may be paid subscriptions #patientchat https://t.co/XtVKRGgsNd
Rheumatoid Patient @rheumpatient
RT @vrulon: @patientchat T5: First and foremost - develop an open relationship with your doctor #patientchat
Lisa Davis Budzinski @lisadbudzinski
T6 (2) https://t.co/gtUIpjsP36 #patientchat https://t.co/XtVKRGgsNd
Lisa Davis Budzinski @lisadbudzinski
Everyone enjoy your weekend no matter where you are ✨ #patientchat
Heather McCullen @H_SalemOaks
RT @QuinlanTurner: @patientchat CT: Reminded of the Mongersen trial. People had all of their hopes there. Research is incredibly important…
Your GPS Doc, LLC @yourgpsdoc
@rheumpatient @jamienholloway This is a sad reality. :-( #patientchat
Rheumatoid Patient @rheumpatient
@Crohnoid I like this psychology! #patientchat
Jewelry On Amazon @jewelryonamazon
Menton Ezil "Spiritual Guidance" Swarovski Crystal Rose Gold Bangle Bracelet Love Designed Adjustable Jewelry https://t.co/lTNXECnc2J #femalefilmmakerfriday #patientchat #CliffhangerFriday
Rheumatoid Patient @rheumpatient
RT @SynceNerd_Carli: A1: I'm also a Science nerd (peep the twitter handle 🙂) so I read up stuff not related to my own illness for kicks and…
Heather McCullen @H_SalemOaks
Thanks everyone. I didn’t get to participate as much as I hoped because I was in an area without wifi. I’m going to have to read through everything tonight. #patientchat
Heather McCullen @H_SalemOaks
@yourgpsdoc @rheumpatient @jamienholloway Too true. The sadder reality is that a lot of patients will think it’s because they don’t care. #patientchat
Rheumatoid Patient @rheumpatient
@TheBingle @patientchat That's what I do as a Patient Researcher. #patientchat
Dr Andrea Graham @asgfootcare
RT @power4patients: T!: I met a woman yesterday who told me she's considered a "bad" patient because she reads & researches all she can bef…
Barby Ingle 📣 @BarbyIngle
Top Influencers of #patientchat 👉 3/23/2018 @patientchat @autonomicrn @barbyingle @salemoaks @kenraytaylor @jamienholloway @mightycasey @crohnoid @vrulon @power4patients https://t.co/SFqrlYLipM via @symplur
Scientific Method @scientific_me
RT @beth_morton: T2: To find the latest research, I follow a bunch of #neurology & #migraine journals and advocacy/foundations on Twitter a…
#patientchat content from Twitter.