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