#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
().
See #patientchat Influencers/Analytics.

Sign up for FREE Symplur Account and Get
  • Create Transcripts with Custom Dates
  • Get Custom Influencer Lists
  • 3x Hashtag Search Results
Sign Up Now
ProfileTweet
JB Ashtin @JBAshtin
RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/THpOrDxCDw https://t.co/HH1Zasoqeq
Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
Kim Emson @kimemson
#patientchat interested in today’s topics. Hi everyone! I’m an animator and I help healthcare organisations with the power of #animation https://t.co/0pzXylTGvF
Patient Empowerment @power4patients
RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat with @AMJohnston1315 here: https://t.co/THpOrDxCDw
Patient Empowerment @power4patients
RT @patientchat: Here’s some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #pat
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Salem Oaks @SalemOaks
#patientchat Kevin From Salem Oaks here. I's been a lean socmed summer for me but I am looking forward to this next hour. https://t.co/1sRKRjBEXQ
Patient Chat @patientchat
I’m Kara from @power4patients, and I’m looking forward to today’s #patientchat with @AMJohnston1315
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Carly Flumer @carlyflumer
@patientchat Hey there, it’s Carly! #Thyroidcancer #survivor and lover of patient #engagement and #empowerment 🤓 #patientchat
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat Hello! I’m Gina. I suffer from a severe sleep/chronic fatigue disorder that doesn’t fall into any neat category. As a result some of my interests are the politics and science of poorly understood illnesses and gender bias in patient care. #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat And who’s willing to listen to you and take you seriously. Sorry, I couldn’t help myself. 😈😜 #patientchat
Patient Chat @patientchat
Today's #patientchat topic is How to Read and Understand Scientific Research https://t.co/9EKCzQBB4E
Carly Flumer @carlyflumer
@GinaMcGalliard @patientchat You need to tell me how you became an ePatient scholar!! #patientchat
Robin Holmes @Majormac1
Hello Robin here from Tennessee. Advocate and caregiver of husband with metastatic breast cancer. #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
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
Hi! I'm Christie – a patient educator and trainer from NY. #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Patient Chat @patientchat
T1: What are scientific journal articles and how do I find them? #patientchat https://t.co/AeRuoxJCNs
Lisa Davis Budzinski @lisadbudzinski
Hi everyone! Lisa here from @Cpnervecenter Stroke & thyroid cancer survivor. We believe in the lived #PatientExperience #patientchat
Beth Morton @beth_morton
Hi #patientchat! I'm on the road to an appointment (not driving!) so will participate a bit now and then pop back later. I advocate for the #migraine. This topic is close to my heart!
Salem Oaks @SalemOaks
T1a: Scientific articles are the lifeblood of scientific progress. Each one is a report on an experiment. Each one gives us just a little bit more knowledge. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Patient Empowerment @power4patients
RT @patientchat: T1: What are scientific journal articles and how do I find them? #patientchat https://t.co/AeRuoxJCNs
Carly Flumer @carlyflumer
@patientchat T1: Scientific journals are done by professionals in the scientific industry. They cover a variety of topics in all aspects of health care, including clinical studies! You can find them on a variety of sites. I’ll list a few of them below: #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
RT @patientchat: T1: What are scientific journal articles and how do I find them? #patientchat https://t.co/AeRuoxJCNs
Beth Morton @beth_morton
*the #migraine community* (oops) #patientchat
Salem Oaks @SalemOaks
T1a: Review articles gather all the scientific articles around a topic and give an overview of the current state of knowledge. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Robin Holmes @Majormac1
@patientchat T-1 Peer reviewed studies & abstracts detailing recent research findings in medical journals for professionals. Online and shared, but miss a lot of valuable information without having a subscription #patientchat
Carly Flumer @carlyflumer
@patientchat T1: PubMed is great, so is Nature, and @TheLancet. You can find them online. You can even check out your local library where a librarian can help you locate them. Some libraries may even have hard copies. :) #patientchat
Salem Oaks @SalemOaks
T1b: Where? Ask your healthcare professional what they have read about your interest lately. Ask for a copy. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Beth Morton @beth_morton
@Majormac1 @patientchat Yes, unless open access, so much is inaccessible to patients and advocates. #patientchat
Patient Empowerment @power4patients
RT @carlyflumer: @patientchat T1: PubMed is great, so is Nature, and @TheLancet. You can find them online. You can even check out your loca…
Robin Holmes @Majormac1
RT @beth_morton: @Majormac1 @patientchat Yes, unless open access, so much is inaccessible to patients and advocates. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 A research article is peer-reviewed and presents a complete description of a new research finding #Patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up.. https://t.co/tmKUhC00x1 #patientchat
Lisa Davis Budzinski @lisadbudzinski
2) A 2nd type is a review. A review compiles the results of many different studies on a topic into an overview of that field. Some journals are dedicated exclusively to publishing review articles #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@beth_morton @Majormac1 @patientchat Transparency is a huge issue in this, especially since you have stigmatized illnesses often have poor quality research that can harm patients. The PACE trial is the ultimate example of this. #patientchat
Patient Chat @patientchat
T2: Do you think being able to read and understand a scientific paper is important for patients and advocates? #patientchat https://t.co/WQDANKiC3Z
Patient Empowerment @power4patients
RT @lisadbudzinski: 2) A 2nd type is a review. A review compiles the results of many different studies on a topic into an overview of that…
Patient Empowerment @power4patients
RT @lisadbudzinski: T1 A research article is peer-reviewed and presents a complete description of a new research finding #Patientchat https…
Patient Empowerment @power4patients
RT @patientchat: T2: Do you think being able to read and understand a scientific paper is important for patients and advocates? #patientcha
ISurvivor Lisa Deck @lbdeck
Hi everyone! I’m Lisa- stroke, Moyamoya and raredisease patient, advocate and speaker from Mass. #patientchat
Jeremy Murphy @jeremypmurphy
RT @patientchat: T2: Do you think being able to read and understand a scientific paper is important for patients and advocates? #patientcha
Carly Flumer @carlyflumer
@patientchat T2: Yes, absolutely! You have to do your research and be updated on the latest findings, especially if you’re advocating for a specific disease, such as #chronic or #rare. #patientchat @_OurOdyssey_
Jeremy Murphy @jeremypmurphy
RT @patientchat: T1: What are scientific journal articles and how do I find them? #patientchat https://t.co/AeRuoxJCNs
Salem Oaks @SalemOaks
T2: Yes but Patients+ do not need feel obligated to become experts in every technical aspect. The trick is deciding how deep to go. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Patient Empowerment @power4patients
@patientchat 100% YES! And we have some tools and tips to help: https://t.co/23CbI0Zv2b #healthliteracy #empowered #patientchat
Nora Helfand @nhelfand
@patientchat T2 It's interesting how with the legal system, we have a whole system of advocates (lawyers) because it's assumed that the layperson will not understand this system. I'm not aware of a counterpart for navigating the medical system except in specific circumstances #patientchat
BMM on Health and Tech @datadrivencare
RT @lisadbudzinski: Hi everyone! Lisa here from @Cpnervecenter Stroke & thyroid cancer survivor. We believe in the lived #PatientExperience
Beth Morton @beth_morton
A1. I find articles by following the leading journals in the disease area of my interest (here, on Twitter). I also follow #migraine researchers. Some will send papers if they are not open access. #patientchat
Carly Flumer @carlyflumer
@SalemOaks @S4PM Yes! I have somewhat of a scientific background, and it can be hard to set boundaries on what to learn! #patientchat
Nora Helfand @nhelfand
@patientchat T2 I think it is important for patients to understand data and risk but we haven't implemented the tools to make that happen. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
Yes! However, I think many patients think that they are too complex. Starting with the abstract and intro, then skip to the conclusions for will help to summarize the findings. #patientchat
Kristina Wolfe @tunaturns
@patientchat I guess I should use the hashtag #patientchat
#DigitalHealth Futurist 👨‍💻 @ManeeshJuneja
RT @patientchat: T2: Do you think being able to read and understand a scientific paper is important for patients and advocates? #patientcha
Patient Empowerment @power4patients
@SalemOaks @S4PM Excellent point! Becoming #healthliterate doesn't mean you need to pursue a medical degree-level of understanding #patientchat
Carly Flumer @carlyflumer
@cvhconsulting That’s what I look at! And if I want to learn more, then I’ll go into the rest of it. #patientchat
Nora Helfand @nhelfand
@patientchat T2 It is a very unrealistic and ableist model to assume patients will all just do their own research and become scientists and advocates, but that's the current model. And then these informed, empowered patients are punished and ridiculed by doctors. #patientchat
Julie Thoren @JulieThoren
@SalemOaks @S4PM T2: Yes! Especially for conditions that are poorly understood and when treatments are few. I've had Google Scholar alerts set up for years and have brought info to my docs. #patientchat
Natalie 🦓 @_Nataliea
@patientchat As a participant in research, yes - I want to be able to at least understand the summaries of the articles that come out of what I’ve participated in! #patientchat A2
Robin Holmes @Majormac1
T-2 Yes, but the study or abstract funded by industry may be developed to make the product or treatment look better then it actually is in real life. Must understand basics like was it prospective or retrospect, how big was the study, was the study peer reviewed? #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat Absolutely yes because lived experience is an important form of expertise. I’ve read over trials touting the success of CBT for insomnia and been shocked at how flawed they were because they were making assumptions actual patients wouldn’t make. #patientchat
Lisa Davis Budzinski @lisadbudzinski
T2 Very essential. It’s the jargon that the healthcare world knows therefore it’s important to know where to find answers & be able to understand/comprehend them. This helps to bridge the communication with healthcare teams✨ #patientchat
Kim Emson @kimemson
T2 is it not possible for a summarised layman’s version ?
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@beth_morton Do you follow @SWHR? They have some incredible #migraine resources. #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
WORD. This is what we are up against. #patientchat
Patient Chat @patientchat
#patientchat
Patient Empowerment @power4patients
@cvhconsulting Very true! Here's a tutorial from our friend @MightyCasey to help https://t.co/2Cnqp4s0sw #healthliterate #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@carlyflumer @patientchat @_OurOdyssey_ And doctors that are pressed for time might not necessarily be up on the latest research. #patientchat
Rev. Dr. Duke @revdrduke
@patientchat When the full text of an article is hidden behind a paywall, any number of my friends in science or medicine are always happy to send me a copy. (Sometimes you can email the researcher and request a copy as well.) #patientchat
Carly Flumer @carlyflumer
@lisadbudzinski Absolutely! But we need people who specialize in #healtiteracy to help others understand! Knowledge is for everyone and it needs to be lay-friendly! #patientchat
Patient Empowerment @power4patients
RT @JulieThoren: @SalemOaks @S4PM T2: Yes! Especially for conditions that are poorly understood and when treatments are few. I've had Goo…
Patient Chat @patientchat
Topic 3 (T3:) coming up... https://t.co/tmKUhC00x1 #patientchat
Robin Holmes @Majormac1
@GinaMcGalliard @carlyflumer @patientchat @_OurOdyssey_ They also know not all research is equal. #patientchat
Patient Chat @patientchat
T3: What is your advice and/or tips for someone who has never read a scientific paper before? #patientchat https://t.co/wBUd1SC4ld
Rev. Dr. Duke @revdrduke
@patientchat T2 - YES. I think it's absolutely essential for anyone who wants to be a participant in their own medical care (or the medical care of someone for whom they're advocating). #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@power4patients @MightyCasey Great! Thanks for sharing. #patientchat
Patient Empowerment @power4patients
@nhelfand @patientchat Wow. "...punished and ridiculed by doctors." Sounds like these folks needs to find themselves some new Drs stat #patientchat
Our Odyssey @_OurOdyssey_
RT @carlyflumer: @patientchat T2: Yes, absolutely! You have to do your research and be updated on the latest findings, especially if you’re…
Patient Empowerment @power4patients
RT @revdrduke: @patientchat T2 - YES. I think it's absolutely essential for anyone who wants to be a participant in their own medical care…
Patient Empowerment @power4patients
RT @patientchat: T3: What is your advice and/or tips for someone who has never read a scientific paper before? #patientchat https://t.co/wB…
Salem Oaks @SalemOaks
So True! #patientchat This will be a topic of discussion at the @S4PM conference on October 15 in Boston #S4PM2019
Carly Flumer @carlyflumer
@patientchat T3: Read information that you’re interested in learning and may even apply to you. Start by reading the abstract and look for keywords to understand the meaning. Look at graphs and tables to help clarify specific data points. #patientchat
Lisa Davis Budzinski @lisadbudzinski
There is nothing worse than to be thrown into the healthcare world as a patient. Trying to figure out condition/conditions while feeling your worst is incomprehensible. #patientchat
Salem Oaks @SalemOaks
T3: Download it, print it, mark it up. My pen always helps me think better. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
JB Ashtin @JBAshtin
RT @carlyflumer: @patientchat T3: Read information that you’re interested in learning and may even apply to you. Start by reading the abstr…
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
RT @patientchat: T3: What is your advice and/or tips for someone who has never read a scientific paper before? #patientchat https://t.co/wB…
Patient Empowerment @power4patients
@patientchat .@JBBC sums it up really well (as always!) here: https://t.co/xgTlVUmZg0 #healthliteracy #patientchat
Salem Oaks @SalemOaks
T3: Start a discussion in your community. Read an article together and discuss your perspectives. We call these "journal club" and work our way through the literature together. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Patient Empowerment @power4patients
RT @carlyflumer: @patientchat T3: Read information that you’re interested in learning and may even apply to you. Start by reading the abstr…
Carly Flumer @carlyflumer
@SalemOaks @S4PM I have a problem of chronic annotating, but I love it. #noshame #patientchat
Robin Holmes @Majormac1
T-3 Find a mentor with a better understanding of research and research articles to ask questions, discuss the research findings. Twitter is full of researchers better able to break down the good & ugly. I learn from them everyday on twitter #patientchat
ISurvivor Lisa Deck @lbdeck
Absolutely! Understanding scientific papers that directly relates to your illness as a patient is critical, yet probably a very under-used resource. Perhaps a way to simplify the scientific findings into layman terms would be helpful to our #PatientExperience. #patientchat
Patient Empowerment @power4patients
RT @Majormac1: T-3 Find a mentor with a better understanding of research and research articles to ask questions, discuss the research findi…
Annette McKinnon @anetto
RT @carlyflumer: @patientchat T2: Yes, absolutely! You have to do your research and be updated on the latest findings, especially if you’re…
Salem Oaks @SalemOaks
RT @Majormac1: T-3 Find a mentor with a better understanding of research and research articles to ask questions, discuss the research findi…
Julie Thoren @JulieThoren
@patientchat T3: Get on a patient forum for your condition and find ppl who can help you understand. Not all forums are the same. I've seen some where nurses/pharmacists/researchers have helped others to understand. Some forums actually have very high level discussions! #patientchat
Patient Empowerment @power4patients
@Majormac1 Great suggestion! #patientchat
Patient Empowerment @power4patients
RT @JulieThoren: @patientchat T3: Get on a patient forum for your condition and find ppl who can help you understand. Not all forums are t…
Kim Emson @kimemson
I forgot the hashtag! #patientchat is it possible for laymen’s summarised versions?
Robin Holmes @Majormac1
RT @JulieThoren: @patientchat T3: Get on a patient forum for your condition and find ppl who can help you understand. Not all forums are t…
Patient Empowerment @power4patients
RT @lbdeck: Absolutely! Understanding scientific papers that directly relates to your illness as a patient is critical, yet probably a very…
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@patientchat T3: Don't get overwhelmed. Start with abstract, intro, and conclusion. Write down questions you have/words you don't understand, and look them up or ask your doc. Ask someone to read it with you. #patientchat
Barby Ingle 📣 @BarbyIngle
T1. Scientific journals are a staple for providers to disseminate research findings and are usually specialized in topics. Depending upon the journal goals, articles include research, re-analyses of others’ research, reviews, untested theories, or opinion pieces #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@JulieThoren @patientchat Yes, I’m frequently used impressed by the level of knowledge I see on patient forums. #patientchat
Patient Chat @patientchat
#patientchat
Annette McKinnon @anetto
RT @power4patients: @patientchat .@JBBC sums it up really well (as always!) here: https://t.co/xgTlVUmZg0 #healthliteracy #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
RT @cvhconsulting: @beth_morton Do you follow @SWHR? They have some incredible #migraine resources. #patientchat
Spencer Health Solutions @spencerhealth
RT @revdrduke: @patientchat When the full text of an article is hidden behind a paywall, any number of my friends in science or medicine ar…
Rachel Martens @RaeofSunshine79
@patientchat T1 I'm late to the Twitter party! ❤ Best way to Google I find is to type in the diagnosis and add "scholarly articles" to your search parameters #patientchat
Salem Oaks @SalemOaks
T3: Be SKEPTICAL! If you find something interesting in the Intro or discussion - follow the reference to verify AND learn more. Don't just accept it at first read. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Annette McKinnon @anetto
T1 I get my journal Articles from Pubmed and PubMed PMC, and get the Retraction Watch newsletter. #patientChat
Julie Thoren @JulieThoren
@GinaMcGalliard @patientchat Here is an example you're probably aware of already https://t.co/EjqOagpepZ #patientchat
Carly Flumer @carlyflumer
@GinaMcGalliard @JulieThoren @patientchat Yes! And groups on Facebook! #patientchat
Kim Emson @kimemson
#patientchat I advise the scientist to commission an easy to understand animated version of the paper
Lisa Davis Budzinski @lisadbudzinski
T3 Do not get overwhelmed. All the words mean something very basic. Every profession has their own verbiage. Highlight the word, look it up &break it down to words you understand. Renal=kidney Femur=thigh bone. It’s easier to read when replaced with words you know✨ #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@kimemson I wish they did this! Sometimes you can look up disease specific information from hospitals such as the @MayoClinic or the @CDCgov that help break down information in more laymen's terms. #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up.. https://t.co/tmKUhC00x1 #patientchat
Carly Flumer @carlyflumer
@RaeofSunshine79 @patientchat I think Google also has a “scholar” section at the top which you can click on & it’ll only show you scholarly articles. #patientchat
Rachel Martens @RaeofSunshine79
@patientchat T1 Its also important to understand that not everything that looks like a journal is legit. There are complexities such as predatory journals to contend with. Which is why as you learn it's important to fact check with trusted team members like your physician. #patientchat
Salem Oaks @SalemOaks
@cvhconsulting @kimemson @MayoClinic @CDCgov #patientchat Who is "they?" Maybe it is "we" This might be a good opportunity for foundations and/or entreprenuers.
Lisa Davis Budzinski @lisadbudzinski
RT @anetto: T1 I get my journal Articles from Pubmed and PubMed PMC, and get the Retraction Watch newsletter. #patientChat
Annette McKinnon @anetto
T3 It’s a good practice for researchers to provide a plain language version of the abstract as well as the scientific language they’re used to. #patientchat
Rev. Dr. Duke @revdrduke
@patientchat Read and reread the abstract before tackling the whole article, to give you a good overview. Read and reread the introduction and conclusion to help you understand the key learnings. #patientchat
Patient Chat @patientchat
T4: What are some things you should do/look for when reading a scientific paper? #patientchat https://t.co/p06O1tTXxe
Rachel Martens @RaeofSunshine79
@patientchat T2 Absolutely!! Its all a part of being engaged in your own health. It's a healthy part of feeling empowered as a knowledgeable patient. Can in some cases save your life. #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
Yes, this is a great and impressively extensive resource! It’s been a lifesaver at times. #patientchat
Salem Oaks @SalemOaks
#patientchat This is great advice. It is all too easy to make something look like the real thing.
Carly Flumer @carlyflumer
@anetto Yesss! Love this idea! #patientchat
Diverse Alzheimers @DiverseAlz
Anyone interested in patient care/advocacy should tune into #patientchat, which has just appeared in timeline. They appear to be talking about research and in particular reading scientific papers as a lay person cc @nursesKidONE
Carly Flumer @carlyflumer
@patientchat Graphs and charts if you learn visually. Keywords that may provide context clues. #patientchat
Salem Oaks @SalemOaks
T4: When was it written? Science is an accumulation of knowledge. It is important to know where a given article sits in that accumulation. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Patient Empowerment @power4patients
RT @RaeofSunshine79: @patientchat T2 Absolutely!! Its all a part of being engaged in your own health. It's a healthy part of feeling empowe…
Patient Empowerment @power4patients
RT @patientchat: T4: What are some things you should do/look for when reading a scientific paper? #patientchat https://t.co/p06O1tTXxe
Annette McKinnon @anetto
T3 It’s good to find a course that will teach you the skills of critical appraisal, and how to read a scientific paper. Sometimes can find at a conference workshop. @CADTH_ACMTS That helps you determine the value of the research. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@SalemOaks @kimemson @MayoClinic @CDCgov I don't know who "they" is, I was thinking it would be great if someone (in general) did this... #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat Whether they utilized both objective and subjective outcome measures if possible. It often seems research that seeks to prove an assumption rather than further knowledge will rely on one or the other rather than both. #patientchat
Barby Ingle 📣 @BarbyIngle
T3. I dont think its necessary 4 every pt, but I do think it is important that it is understood & properly translated to 'RLE' at some point. That is 1 goal that NPOs like iPain has w projects #iPainSummit2019 & #iPainLiving Mag. Make it understandable 2 public #patientchat
Patient Empowerment @power4patients
RT @RaeofSunshine79: @patientchat T1 Its also important to understand that not everything that looks like a journal is legit. There are com…
Rev. Dr. Duke @revdrduke
@patientchat T4 - Very first thing I look for: when was it published? Anything older than five years has a lesser weight for me. Secondly, how big was the study (how many patients involved)? Third, is it retrospective or prospective? #patientchat
Patient Empowerment @power4patients
RT @lisadbudzinski: T3 Do not get overwhelmed. All the words mean something very basic. Every profession has their own verbiage. Highlight…
Salem Oaks @SalemOaks
T4: Authors affiliations, number/quality of references, number of citations. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM
Patient Empowerment @power4patients
RT @JulieThoren: @GinaMcGalliard @patientchat Here is an example you're probably aware of already https://t.co/EjqOagpepZ #patientchat
Nora Helfand @nhelfand
@patientchat T4 Find everything - words, phrases, explanations, visuals - that you do not understand. Write down what you think you would need to know in order to understand them. Identify the easiest ones and look them up and ask. #patientchat
Patient Empowerment @power4patients
RT @BarbyIngle: T1. Scientific journals are a staple for providers to disseminate research findings and are usually specialized in topics.…
Patient Empowerment @power4patients
RT @cvhconsulting: @patientchat T3: Don't get overwhelmed. Start with abstract, intro, and conclusion. Write down questions you have/words…
Nora Helfand @nhelfand
@patientchat T4 Recognize when something is too complicated for now or needs to be answered by someone who knows more. #patientchat
S Olson @ThatVDOVault
RT @DiverseAlz: Anyone interested in patient care/advocacy should tune into #patientchat, which has just appeared in timeline. They appear…
Annette McKinnon @anetto
T3 Reading scientific papers helps you become aware of the topics that are being researched. Then you realize how far some of them are from what matters to Patients. #patientchat
Patient Empowerment @power4patients
RT @revdrduke: @patientchat T4 - Very first thing I look for: when was it published? Anything older than five years has a lesser weight for…
Robin Holmes @Majormac1
@revdrduke @patientchat Exactly how I started. I still take research I find with me to Oncology appointments. I will never be at the level of a researcher or MD, but slowly my level of knowledge growns over time. Would love to take Mac’s Oncology team out to lunch to pick their brain #patientchat
Barby Ingle 📣 @BarbyIngle
T3. Have a pen and highlighter ready. Look up words you are not familure with and go line by line to better understand what you are reading. I have seen studies like the 1 on vitamin C be taken way out of context in translation & still wrongly spread to this day. #patientchat
Suzie Siegel @SuzieSiegel
@SalemOaks @S4PM I'm late to this #patientchat ... but some social media will post older studies as if they were news.
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
RT @nhelfand: @patientchat T4 Find everything - words, phrases, explanations, visuals - that you do not understand. Write down what you thi…
Nora Helfand @nhelfand
@patientchat T4 Look for the funding sources and conflicts of interest. #patientchat
Suzie Siegel @SuzieSiegel
RT @revdrduke: @patientchat T4 - Very first thing I look for: when was it published? Anything older than five years has a lesser weight for…
Lisa Davis Budzinski @lisadbudzinski
Remember-“The whole of science is nothing more than a refinement of everyday thinking”- Albert Einstein Break it down to words you can understand #patientchat
Patient Empowerment @power4patients
RT @BarbyIngle: T3. Have a pen and highlighter ready. Look up words you are not familure with and go line by line to better understand what…
Carly Flumer @carlyflumer
@nhelfand @patientchat Are those specifically stated? #patientchat
Salem Oaks @SalemOaks
In fact, some News organizations do the same. #patientchat
Kelly Rawlings, MPH @KellyRawlings
RT @anetto: T3 Reading scientific papers helps you become aware of the topics that are being researched. Then you realize how far some of t…
Suzie Siegel @SuzieSiegel
#Sarcoma patients: There's a #patientchat ending soon about how to make sense of scientific papers. Use the hashtag to read what's already been tweeted.
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat A4 Also consider if the premise of the study is flawed. I.e. many studies on CBT for insomnia assume insomnia is always a psychological rather than physical condition, rather than segmenting out the two groups. A faulty premise can make an entire study just noise. #patientchat
Annette McKinnon @anetto
T4 I also look at the authors and where the paper originated. Usually I don’t read case studies or animal test papers. It’s impossible to keep up so I narrow my field. #patientchat
Patient Empowerment @power4patients
RT @lisadbudzinski: Remember-“The whole of science is nothing more than a refinement of everyday thinking”- Albert Einstein Break it down t…
Lisa Davis Budzinski @lisadbudzinski
@revdrduke @patientchat Yes! A great way to start deep research #patientchat
Robin Holmes @Majormac1
T-4 was it published in a peer reviewed journal and when? Was it prospective or retrospective because to researchers that matters? How big was the study? The more pts the better #patientchat
Robin Holmes @Majormac1
RT @BarbyIngle: T3. Have a pen and highlighter ready. Look up words you are not familure with and go line by line to better understand what…
Patient Chat @patientchat
T5: How can you then apply a scientific paper to your own/loved one’s circumstances? #patientchat https://t.co/v0x7rJJrpU
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@nhelfand @patientchat OMG yes! Always follow the money. #patientchat
Barby Ingle 📣 @BarbyIngle
T4. Some things I look for are the credentials of the journal & publisher. I browse the content they publish for quality & relevance. Check the quality of their website, how often is it updated? Check the ranking of the article and/or journal as a whole. #patientchat
Diverse Alzheimers @DiverseAlz
@SalemOaks @S4PM Hi. Yes when written but also publication date. Some journals publish papers years later; author; affiliation but without going into info science territory, keywords, abstract, relevance. Apologies but how have you defined scientific paper? #patientchat
Patient Empowerment @power4patients
RT @BarbyIngle: T4. Some things I look for are the credentials of the journal & publisher. I browse the content they publish for quality &…
Patient Empowerment @power4patients
RT @patientchat: T5: How can you then apply a scientific paper to your own/loved one’s circumstances? #patientchat https://t.co/v0x7rJJrpU
Rachel Martens @RaeofSunshine79
@patientchat T4 Hard to fit this into a tweet! But data size is one thing. 12 ppl is super small. A couple 1000 and you might really have something. Has this study been repeated elsewhere? Important too to know what you're looking at. Learn the terms. What a systematic review /1 #patientchat
Annette McKinnon @anetto
@nhelfand @patientchat Agree. I read an interesting paper lately but most of the authors worked at the same pharma company. So is it 'real' research or promotion? #patientchat
Robin Holmes @Majormac1
@BarbyIngle That’s why having researcher friends on Twitter is great. They will point out flaws in studies helping you grow in having a better understanding of quality of findings. A lot of junk science is out there. #patientchat
Dr Leslie Robinson @LeslieRob10
T4 check if there are any potential biases. Eg, was the study paid for by a drug company #patientchat
Rachel Martens @RaeofSunshine79
@patientchat T4 ....is. Scoping review. RCT. All these things have their place in ranking a study. #patientchat
Suzie Siegel @SuzieSiegel
Don't be embarrassed to ask questions of the authors of scientific studies. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@patientchat In addition to all the great points already made, see if the study is funded by pharma or government? Did they include women and people of color in the trial? Did they analyze the data by race, gender, etc? #patientchat
SWHR @SWHR
RT @cvhconsulting: @beth_morton Do you follow @SWHR? They have some incredible #migraine resources. #patientchat
Rachel Martens @RaeofSunshine79
@SalemOaks #patientchat it's a tough one too! It's one reason I also recommend following @RetractionWatch on twitter!
Carly Flumer @carlyflumer
@patientchat I would say take research as a grain of salt. It’s incredibly important to know and understand, but every patient is different. I think it would depend on how large and how specific the study is.#patientchat
Citizen Health @CitizenHealthio
RT @lisadbudzinski: Remember-“The whole of science is nothing more than a refinement of everyday thinking”- Albert Einstein Break it down t…
Suzie Siegel @SuzieSiegel
Check out who funded the research. Beware of commercial sites (.com) & journals that no one has heard of. #patientchat
Salem Oaks @SalemOaks
Having been there, it is real science. They are the ones who did the work. However, that does not mean it has no promotional purpose. Take with a small grain of salt. #patientchat
Nora Helfand @nhelfand
@patientchat T5 Print it out to bring to the doctor. #patientchat
Suzie Siegel @SuzieSiegel
RT @RaeofSunshine79: @patientchat T1 Its also important to understand that not everything that looks like a journal is legit. There are com…
Rev. Dr. Duke @revdrduke
@patientchat T5 - I keep a notebook and record the bibliographic info of every paper I read that's relevant to my dx and jot down any key pieces of info from particular papers that I think might be helpful in future decision-making. I use it to help me understand my options. #patientchat
Salem Oaks @SalemOaks
T5: Talk to your healthcare provider to help you apply it. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks #S4PM2019
Spencer Health Solutions @spencerhealth
@RaeofSunshine79 @SalemOaks @RetractionWatch Great tip @RaeofSunshine79! #patientchat Done!
Suzie Siegel @SuzieSiegel
RT @anetto: T3 It’s a good practice for researchers to provide a plain language version of the abstract as well as the scientific language…
Salem Oaks @SalemOaks
T5: Cautiously. One article is not a silver bullet. Results in mice probably don't apply yet. Results in the clinic may or may not fit your situation. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM #S4PM2019
Dr Leslie Robinson @LeslieRob10
However, some papers are looking at lived experience of the patient. Such studies don't aim for high numbers but detailed description. These shouldn't be under estimated as lacking quality, they are also very useful for patients #patientchat
Annette McKinnon @anetto
It really helps when you’re following good researchers on Twitter and also the people who debunk from the scientific basis. @DrJenGunter @JATetro @SteveUBC @bengoldacre #patientchat
Lisa Davis Budzinski @lisadbudzinski
T5 Find the touch points that apply to the condition you’re researching then recognize if it’s applicable in describing & helpful to the situation. If there are measures mentioned that could be tried to ease symptoms review with your physician. #patientchat
Salem Oaks @SalemOaks
T5: Check and see if you would qualify for the study (inclusion/exclusion criteria). The closer you come, the more appropriate the outcome. Check the product label for the same. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks #S4PM2019
Nora Helfand @nhelfand
@patientchat T5 Ask yourself first if it does apply. Were the patients similar to you demographically and in terms of diagnosis? Would you have qualified for the study? #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat A5 It’s helpful in deciding if a treatment is a good option for you & doing risk/benefit analysis. Docs aren’t always looking at it in terms of what applies individual patients, plus I’ve noticed treatments can either be overly trendy or stigmatized. #patientchat
Jason 𝑻𝒉𝒆 𝑮𝒆𝒓𝒎 𝑮𝒖𝒚 Tetro @JATetro
RT @anetto: It really helps when you’re following good researchers on Twitter and also the people who debunk from the scientific basis. @Dr
Suzie Siegel @SuzieSiegel
Keep in mind that nonprofits may have inaccurate or outdated scientific info on their websites. #patientchat
Citizen Health @CitizenHealthio
One mission is to help make this better. You already are ill and you don't need more stress, anxiety, and worry. You need help. Care. Answers. You need an ally, not adversaries. Help us make this the norm: https://t.co/yjq3B2Ok45
Robin Holmes @Majormac1
@LeslieRob10 Can this be hard to trace? We use to fund researchers in biomedical sales. And hire them to discuss findings at medical conferences. Most share, but look at what happened at Sloan. #patientchat
Salem Oaks @SalemOaks
T5: If it is an approved treatment, contact the company and ask to talk to a clinician working on the product. Ask specifically for Medical Affairs. Tell them what you read and whether there is any work going on in your condition. #patientchat #pinksocks #askpatients #S4PM2019
Dr Leslie Robinson @LeslieRob10
T5 use it to start a conversation with your clinical team #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
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…
Lisa Davis Budzinski @lisadbudzinski
Once you start comprehending scientific articles of your condition(s), you will find yourself more at ease speaking with your Drs. Which in turn gives you respect for being able to speak intelligently to your healthcare team. #patientchat
Patient Empowerment @power4patients
RT @LeslieRob10: T5 use it to start a conversation with your clinical team #patientchat https://t.co/huiNq5f4yu
Dr Leslie Robinson @LeslieRob10
It's usually a requirement of all journals that authors declare any conflict of interest. I'm sorry but I am not familiar with Sloan ?
Patient Empowerment @power4patients
RT @lisadbudzinski: T5 Find the touch points that apply to the condition you’re researching then recognize if it’s applicable in describing…
Barby Ingle 📣 @BarbyIngle
T5 Back in 2012 I heard of a 'new' TX that people were even going overseas 2 get. I questioned it then & watched & listened. 2019 the US studies showed what I saw in the papers back then it was not actually working 4 real world Pts, it can take time to understand #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@patientchat It can help with diagnosis if you’ve felt dismissed or ignored. Once you’ve researched your symptoms, explaining that your symptoms line up with your findings can help you get the care you need. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
RT @GinaMcGalliard: @patientchat A5 It’s helpful in deciding if a treatment is a good option for you & doing risk/benefit analysis. Docs ar…
Carly Flumer @carlyflumer
@patientchat CT: Learning clinical language is HARD. Use your care team to decipher info you’re interested in and may be applicable. Start out with subjects that interest you. Do a simple google scholar search & see what you find! #patientchat
Rachel Martens @RaeofSunshine79
@LeslieRob10 True enough! Thank you for adding this! So hard to explain a lot of this on twitter. Context is important and for patients it can be a long process to learn this. You have to become a bit of a detective. #patientchat
Annette McKinnon @anetto
T5 Many articles about #patientengagement and #Patients as partners in research, can be used by patient and caregiver partners in a general way that doesn’t really apply to our own personal care so much as how we hope to change/contribute to health research. #patientchat
Diverse Alzheimers @DiverseAlz
@patientchat Find @DementiaJournal excellent in reach, accessibility, (often includes contributions from people with dementia, experts by experience) practicality as well as academic bias, which can be hard to achieve. Is about relevance and need. #patientchat.
Salem Oaks @SalemOaks
@LeslieRob10 #patientchat The fact is that the vast majority of clinical studies ARE going to be performed by biopharma companies. Good advice to watch for biases.
Robin Holmes @Majormac1
T5 Knowledge is power. If your MD doesn’t think you pulled the info from the web, but learned it at a conference or a non-profit they will be more likely to take you a little more seriously #patientchat
Lisa Davis Budzinski @lisadbudzinski
@anetto @DrJenGunter @JATetro @SteveUBC @bengoldacre YES! 👏👏👏 #patientchat
Dr Leslie Robinson @LeslieRob10
A resource like this may also help https://t.co/pHB3QT7I3C #patientchat
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@cvhconsulting @patientchat CT Yes indeed. Squeaky wheel does get the oil oftentimes, as much as all patients deserve high quality medical care. #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
RT @SuzieSiegel: Keep in mind that nonprofits may have inaccurate or outdated scientific info on their websites. #patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour
Dr Leslie Robinson @LeslieRob10
It's hard enough learning these skills as a health student never mind a lay person. We need to help patients and Public interpret this info and we HAVE to start to write up science so it's accessible to all #patientchat
Robin Holmes @Majormac1
@SuzieSiegel That’s true. I tend to follow the one’s that offer follow ups after conferences. Also updated websites like you pointed out. #patientchat
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, September 6th. Hope to see you there! https://t.co/gSQ1FtjWcI
Julie Thoren @JulieThoren
T5: I've actually presented information I've found to my physician many times. She verified what I presented and then adopted some new treatments into her practice. It takes many yrs for current knowledge to enter clinical practice. #patientchat
Annette McKinnon @anetto
@lisadbudzinski @DrJenGunter @JATetro @SteveUBC @bengoldacre I missed mentioning @CaulfieldTim the Goop debunker. #patientChat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@patientchat @power4patients Thank you for the great questions! #patientchat
Patient Empowerment @power4patients
RT @patientchat: The next Empowered #patientchat will be Friday, September 6th. Hope to see you there! https://t.co/gSQ1FtjWcI
Suzie Siegel @SuzieSiegel
RT @patientchat: The next Empowered #patientchat will be Friday, September 6th. Hope to see you there! https://t.co/gSQ1FtjWcI
Patient Chat @patientchat
Keep the conversation going between chats with hashtag #patientchat and let us know if you are interested in being a special guest on #patientchat by sending us a DM or email admin@powerfulpatients.org
Patient Empowerment @power4patients
RT @LeslieRob10: It's hard enough learning these skills as a health student never mind a lay person. We need to help patients and Public in…
Rachel Martens @RaeofSunshine79
@patientchat #patientchat /2 ..when it comes to serious medical decisions. And so I feel more empowered as a caregiver when I too am bringing evidence basis to the table when it comes to next steps.
Lisa Davis Budzinski @lisadbudzinski
CT: Knowing scientific research & articles are what is respected in the healthcare world puts you in an academic space to learn & speak in their terms ✨ #patientchat
Nora Helfand @nhelfand
@patientchat CT There is a very steep learning curve for scientific literacy. It can be done and patients often understand the cutting edge of research. But we still need to find ways to actively inform patients who cannot self-train to this extent. #patientchat
Salem Oaks @SalemOaks
@SuzieSiegel #patientchat Absolutely. So many times we hear about breakthroughs #inmice and never get the real story. There is only so much you can report in 15 seconds.
Ataxia and Me CIO 1184030 @Ataxia_and_Me
@SalemOaks @S4PM #openaccess ( @_OpenPharma ) #patientchat
Lisa Davis Budzinski @lisadbudzinski
Everyone have a great weekend no matter where you are✨ #patientchat
Rachel Martens @RaeofSunshine79
@SuzieSiegel @patientchat That's the thing. I know our small data set of families hang their hat on a single evidence review when it comes to prenatal decision making. But as I mention in another tweet. It's the context that matters in regards to data size. ❤ #patientchat
Christie F. VanHorne, M.Ed, MPH @cvhconsulting
@SalemOaks @kimemson @MayoClinic @CDCgov 😂 Did you see that I’m a consultant? I like this idea, but I don’t know how realistic it is. Keeping up with medical journals would be challenging, and who would fund it? I think it’s more realistic to help patients 1:1. #patientchat
Julie Thoren @JulieThoren
@Majormac1 Research is often presented at conferences prior to publication. People attending the conferences often tweet new info. Following researches on Twitter help to! #patientchat
Rachel Martens @RaeofSunshine79
@LeslieRob10 Completely agree!! I love me a good lay summary!! That shouldn't be such a unicorn of a research concept in this day and age. #patientchat
Salem Oaks @SalemOaks
@cvhconsulting @kimemson @MayoClinic @CDCgov Yes I did. And we seem to be doing similar work. I am always looking for other ways we can help patients+ understand the literature and R&D in general. Maybe beyond 1:1 to 1:PAO #patientchat
Charlotte Beardmore @SCoRCBeardmore
@SoRRachelHarris are you following?
Suzie Siegel @SuzieSiegel
I'm grateful to @LeeHelmanLA for explaining years ago that not all #sarcoma research at conferences is valuable. Academics have to publish. #patientchat
Suzie Siegel @SuzieSiegel
@JulieThoren @Majormac1 Patients need to understand that research at conferences may be very early/preliminary. #patientchat
Salem Oaks @SalemOaks
@SuzieSiegel @LeslieRob10 #patientchat That's right. I have rarely seen intentionally biased research articles. However, I think the system rewards a bias toward positive results. This is a gap that the literature is not likely to fill.
#patientchat content from Twitter.