#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | JB Ashtin @JBAshtin RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: 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. |
 | Patient Empowerment Network @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 Network @power4patients RT @patientchat: Here’s some handy articles on participating in tweet chats: Here’s some handy articles on participating in tweet chats: 1) https://t.co/KMfOQkYb9y and 2) https://t.co/hTxvLlyETu #patientchat |
| 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 (she/her) @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 |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is How to Read and Understand Scientific Research https://t.co/9EKCzQBB4E |
| Carly Flumer (she/her) @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 (she/her) @christie_mph 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 Network @power4patients RT @patientchat: T1: T1: What are scientific journal articles and how do I find them? #patientchat https://t.co/AeRuoxJCNs |
| Carly Flumer (she/her) @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 |
| 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 (she/her) @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 Network @power4patients RT @carlyflumer: @patientchat T1: @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 |
| 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 |
| 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 Network @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 field. Some journals are dedicated exclusively to publishing review articles #patientchat |
| Patient Empowerment Network @power4patients RT @lisadbudzinski: T1 A research article is peer-reviewed and presents a complete description of a new research finding #Patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: Do you think being able to read and understand a scientific paper is important for patients and advocates? #patientchat https://t.co/WQDANKiC3Z |
 | 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: T2: Do you think being able to read and understand a scientific paper is important for patients and advocates? #patientchat https://t.co/WQDANKiC3Z |
| Carly Flumer (she/her) @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: 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 Network @power4patients @patientchat 100% YES! And we have some tools and tips to help: https://t.co/23CbI0Zv2b #healthliteracy #empowered #patientchat |
| 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 (she/her) @carlyflumer @SalemOaks @S4PM Yes! I have somewhat of a scientific background, and it can be hard to set boundaries on what to learn! #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph 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 |
| Patient Empowerment Network @power4patients @SalemOaks @S4PM Excellent point! Becoming #healthliterate doesn't mean you need to pursue a medical degree-level of understanding #patientchat |
| Carly Flumer (she/her) @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 |
 | 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 |
| 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 |
| 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 |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @beth_morton Do you follow @SWHR? They have some incredible #migraine resources. #patientchat |
| Patient Chat @patientchat #patientchat |
| Patient Empowerment Network @power4patients @cvhconsulting Very true! Here's a tutorial from our friend @MightyCasey to help https://t.co/2Cnqp4s0sw #healthliterate #patientchat |
 | Rev. Dr. Stacey Simpson 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 (she/her) @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 Network @power4patients RT @JulieThoren: @SalemOaks @S4PM T2: @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 |
| 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. Stacey Simpson 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 (she/her) @christie_mph @power4patients @MightyCasey Great! Thanks for sharing. #patientchat |
| Patient Empowerment Network @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: @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_ |
| Patient Empowerment Network @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 (or the medical care of someone for whom they're advocating). #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What is your advice and/or tips for someone who has never read a scientific paper before? #patientchat https://t.co/wBUd1SC4ld |
| 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 (she/her) @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: @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 |
| Patient Empowerment Network @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 Network @power4patients RT @carlyflumer: @patientchat T3: @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 |
| Carly Flumer (she/her) @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 Network @power4patients RT @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 |
 | Annette McKinnon @anetto RT @carlyflumer: @patientchat T2: @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_ |
| 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 findings. Twitter is full of researchers better able to break down the good & ugly. I learn from them everyday on twitter #patientchat |
| 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 Network @power4patients @Majormac1 Great suggestion! #patientchat |
| Patient Empowerment Network @power4patients RT @JulieThoren: @patientchat T3: @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 Network @power4patients RT @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 |
| Robin Holmes @Majormac1 RT @JulieThoren: @patientchat T3: @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 |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @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 Official @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 |
| Patient Chat @patientchat #patientchat |
| Annette McKinnon @anetto RT @power4patients: @patientchat .@JBBC sums it up really well (as always!) here: @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 are always happy to send me a copy. (Sometimes you can email the researcher and request a copy as well.) #patientchat |
 | Rachel Martens ♿️ (she/her) @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 (she/her) @carlyflumer @GinaMcGalliard @JulieThoren @patientchat Yes! And groups on Facebook! #patientchat |
| 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 (she/her) @christie_mph @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 (she/her) @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 ♿️ (she/her) @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. Stacey Simpson 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 ♿️ (she/her) @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 |
| Salem Oaks @SalemOaks #patientchat This is great advice. It is all too easy to make something look like the real thing. |
| Carly Flumer (she/her) @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 (she/her) @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 Network @power4patients RT @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 |
| Patient Empowerment Network @power4patients RT @patientchat: T4: 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 (she/her) @christie_mph @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 |
| Patient Empowerment Network @power4patients RT @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 |
| Barby Ingle Official @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 |
| Rev. Dr. Stacey Simpson 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 Network @power4patients RT @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 |
| Salem Oaks @SalemOaks T4: Authors affiliations, number/quality of references, number of citations. #patientchat #pinksocks #askpatients #drugdevelopment #healthliteracy #inmice @salemoaks @S4PM |
| Patient Empowerment Network @power4patients RT @JulieThoren: @GinaMcGalliard @patientchat Here is an example you're probably aware of already https://t.co/EjqOagpepZ #patientchat |
| Patient Empowerment Network @power4patients RT @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 |
| Patient Empowerment Network @power4patients RT @cvhconsulting: @patientchat T3: @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 |
| 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 Network @power4patients RT @revdrduke: @patientchat T4 - Very first thing I look for: @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 |
| 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 Official @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. |
| Suzie Siegel @SuzieSiegel RT @revdrduke: @patientchat T4 - Very first thing I look for: @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 |
| 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 Network @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 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 |
| Carly Flumer (she/her) @carlyflumer @nhelfand @patientchat Are those specifically stated? #patientchat |
| Salem Oaks @SalemOaks In fact, some News organizations do the same. #patientchat |
 | Kelly Rawlings, MPH, PWD @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 them are from what matters to Patients. #patientchat |
| 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. |
| 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 Network @power4patients RT @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 |
| 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 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 |
| Patient Chat @patientchat T5: How can you then apply a scientific paper to your own/loved one’s circumstances? #patientchat https://t.co/v0x7rJJrpU |
| Barby Ingle Official @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 Network @power4patients RT @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 |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How can you then apply a scientific paper to your own/loved one’s circumstances? #patientchat https://t.co/v0x7rJJrpU |
| Rachel Martens ♿️ (she/her) @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 FCR @LeslieRob10 T4 check if there are any potential biases. Eg, was the study paid for by a drug company #patientchat |
| Rachel Martens ♿️ (she/her) @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 (she/her) @christie_mph @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 ♿️ (she/her) @RaeofSunshine79 @SalemOaks #patientchat it's a tough one too! It's one reason I also recommend following @RetractionWatch on twitter! |
| Carly Flumer (she/her) @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 to words you can understand #patientchat |
| 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 |
| Suzie Siegel @SuzieSiegel RT @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 |
| Rev. Dr. Stacey Simpson 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 they’re used to. #patientchat |
| 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 FCR @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 |
 | 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. @DrJenGunter @JATetro @SteveUBC @bengoldacre #patientchat |
| 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 FCR @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 Network @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: #patientchat |
| Patient Empowerment Network @power4patients RT @LeslieRob10: T5 use it to start a conversation with your clinical team #patientchat |
| 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 |
| Dr Leslie Robinson FCR @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 Network @power4patients RT @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 |
| Barby Ingle Official @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 (she/her) @christie_mph @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 |
| Carly Flumer (she/her) @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 ♿️ (she/her) @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 FCR @LeslieRob10 A resource like this may also help https://t.co/pHB3QT7I3C #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph 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 FCR @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 (she/her) @christie_mph @patientchat @power4patients Thank you for the great questions! #patientchat |
| Patient Empowerment Network @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 Network @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 interpret this info and we HAVE to start to write up science so it's accessible to all #patientchat |
| Rachel Martens ♿️ (she/her) @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 |
| 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. |
| Lisa Davis Budzinski @lisadbudzinski Everyone have a great weekend no matter where you are✨ #patientchat |
| Rachel Martens ♿️ (she/her) @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 (she/her) @christie_mph @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 ♿️ (she/her) @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 CBE @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.