#WEGOHealthChat Transcript
Healthcare social media transcript of the #WEGOHealthChat hashtag.
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See #WEGOHealthChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Social Health Network @socialhealthnet Welcome to the August #WEGOHealthChat and thanks for joining us! Today we're joined by special guest @J4theablerblog to discuss how to sift through the overwhelming amount of health info online. https://t.co/CvXQnvrkUb |
| Social Health Network @socialhealthnet But before we get started, let's get some housekeeping things out of the way! To help organize the chat, questions will be labeled Q1, Q2, Q3, etc & answers should be labeled A1, A2, A3, etc by you! #WEGOHealthChat |
 | Debbe McCall @DebbeMcCall RT @wegohealth: 15-minute countdown until our #WEGOHealthChat from 1-2pm ET today! Today we're joined by @J4theablerblog1 as a special guest. Make sure to go give Jessica a follow & plan to join in the discussion https://t.co/wGgQNiQUnI https://t.co/RWL5Yk5MOx |
| Social Health Network @socialhealthnet Today’s discussion surrounds the content and resources online for your community. Working with #PatientLeaders, we find that a major complaint they have is sifting through inaccurate information online to push accurate content to their community. #wegohealthchat |
 | Leslie Krongold, EdD @Leslie_GHF Hello...I'm Leslie in Northern California. I have a rare disease -- myotonic dystrophy -- and my podcast, Glass Half Full, explores positive ways to cope with having a chronic health condition. #WEGOHealthChat |
 | Kristen @srvingofspprt Welcome to today's #WEGOHealthChat everyone! Be sure to say hi & where you're from! |
 | Deeanne @twistedpsister Deeanne, live from my Remicade infusion in Orlando, FL. If I drift in and out, I’ll answer ASAP #wegohealthchat |
 | Joshua E. Robinson @jrobinjrob #wegohealthchat Josh Grafton WV |
| Social Health Network @socialhealthnet For the context of today’s discussion, think about the evolution of resources you see online. Let’s talk about the good, the bad, the accurate, the inaccurate and how we can hone in on the best content for our communities. #WEGOHealthChat |
| Kristen @srvingofspprt @Leslie_GHF Hey Leslie! Glad you could make it:) #WEGOHealthChat |
 | Barby Ingle Official @BarbyIngle AM (Absolutely Motivated) everyone!!!!!!!!! *\O/* @BarbyIngle #CheerleaderofHOPE here to join the convo with #wegohealthchat https://t.co/KrpZQsWTWx |
| Social Health Network @socialhealthnet We’ll be looking to you and @J4theablerblog to have a great convo today! Who else is here today to have a great chat? #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @BarbyIngle: AM (Absolutely Motivated) everyone!!!!!!!!! *\O/* @BarbyIngle #CheerleaderofHOPE here to join the convo with #wegohealthchat https://t.co/KrpZQsWTWx |
| Social Health Network @socialhealthnet We’re excited for the topic, let’s jump into question 1. #WEGOHealthChat |
| Kristen @srvingofspprt @spondywolfgirl Welcome Deeanne! Happy you could hang out with us for the hour #WEGOHealthChat |
| Social Health Network @socialhealthnet Question 1. Whenever you first started your health journey, which online sources did you turn to? How did you find them? Did anyone refer them to you? #WEGOHealthChat |
| Kristen @srvingofspprt @jrobinjrob Hey Josh! Welcome to today's #WEGOHealthChat:) |
| Joshua E. Robinson @jrobinjrob @srvingofspprt Hi Kristen #WEGOHealthChat |
| Joshua E. Robinson @jrobinjrob #wegohealthchat Crohn's and Colitis @CCfdnWPAWV |
| Deeanne @twistedpsister A1 I think the first thing I found was ANRF which led me to IFAA. Great resources! #wegohealthchat |
 | Alan Brewington @abrewi3010 A1 my first adventure wasn’t online. It was annoying the hell out of a local hospitals payment office until a stumbled across the right question that got me what I wanted. I wasn’t going to accept no. #WEGOHealthChat |
 | Beth Morton @beth_morton Hi everyone! Beth, joining from Vermont! #WEGOHealthChat |
 | Julie Croner @justagoodlife A1 - I know that the @NPF had resources out there. But for me and #psoriaticArthritis there wasn't a ton PsA related. So I was stuck looking at psoriasis and rheumatoid arthritis resources #WEGOHealthChat |
| Kristen @srvingofspprt A1. Honestly, the best online source I've turned to is other Patient Leaders! That's why I love the @wegohealth FB group- everyone is always sharing new and creative ways to get your message out #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A1. I didnt. I hardly used a computer at work (head cheer/dance coach at #WSU - #GoCougs). Life was more about physical activities & in person interaction for me. I didnt start using a computer for online sources until I got my first remission in 2009/early 2010 #WEGOHealthChat |
| Leslie Krongold, EdD @Leslie_GHF A1: Diagnosed ~ 20 years ago, there were few online resources - reputable or not. Most memorable was a chart estimating my time of death bet. 48-55 years old. Last year I exceeded that. ;-) #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @srvingofspprt: A1. Honestly, the best online source I've turned to is other Patient Leaders! That's why I love the @wegohealth FB group- everyone is always sharing new and creative ways to get your message out #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @abrewi3010: A1 my first adventure wasn’t online. It was annoying the hell out of a local hospitals payment office until a stumbled across the right question that got me what I wanted. I wasn’t going to accept no. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @spondywolfgirl: A1 I think the first thing I found was ANRF which led me to IFAA. Great resources! #wegohealthchat |
| Kristen @srvingofspprt @beth_morton Welcome Beth! Glad you could make it!! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @Leslie_GHF: A1: A1: Diagnosed ~ 20 years ago, there were few online resources - reputable or not. Most memorable was a chart estimating my time of death bet. 48-55 years old. Last year I exceeded that. ;-) #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @BarbyIngle: A1. I didnt. I hardly used a computer at work (head cheer/dance coach at #WSU - #GoCougs). Life was more about physical activities & in person interaction for me. I didnt start using a computer for online sources until I got my first remission in 2009/early 2010 #WEGOHealthChat |
| Beth Morton @beth_morton A1: My first resource was FB groups with other patients, then Twitter where I think I found more advocates, doctors, & researchers. #WEGOHealthChat |
| Social Health Network @socialhealthnet Some bring up a great point. It might have been before online communities. If that's the case, do you remember the first resources that you looked to online? Even if it was a few years down the road. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @beth_morton: A1: A1: My first resource was FB groups with other patients, then Twitter where I think I found more advocates, doctors, & researchers. #WEGOHealthChat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
| Alan Brewington @abrewi3010 A1 my online activity started about 8 years after my self advocacy. I’m still an online newbie in many respects. #WEGOHealthChat |
 | Melissa VanHouten @melissarvh A1 Exactly the same for me! #Gastroparesis #CureGP #WegoHealthChat |
 | Patient Advisors @PatientAdvisors A1 I started with an online Yahoo group that was very research oriented. After that it was PubMed all the way. #wegohealthchat |
| Joshua E. Robinson @jrobinjrob A1a Facebook and We Are Crohn's #wegohealthchat |
| Social Health Network @socialhealthnet RT @PatientAdvisors: A1 I started with an online Yahoo group that was very research oriented. After that it was PubMed all the way. #wegohealthchat |
| Social Health Network @socialhealthnet Fun fact! WEGO Health was started after realizing the infinite wealth #PatientLeaders had to share in yahoo groups! #WEGOHealthChat |
| Kristen @srvingofspprt I found a few online sources but I felt like it was missing the emotional aspect I was so strongly experiencing. It was really through connecting with others- online or in person- that I found the hope, strength & sanity I was seeking #wegohealthchat |
| Social Health Network @socialhealthnet Great - on to question 2. . . #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle First resource I looked up doesn't exist anymore. Second was a my books, I had multiple for sale, and books were a tool I used IRL way more than computers, but it was cool to see my books doing well online and I added digital versions (kindle) seeing the need. #WEGOHealthChat |
| Social Health Network @socialhealthnet Question 2. Looking back at the first online sources you looked at, do you feel like they were accurate? What did you learn from them? #WEGOHealthChat |
| Social Health Network @socialhealthnet And to dive into it deeper, Were these resources made by a nonprofit, foundation, pharma company, etc or were these resources created by other #PatientLeaders? #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @BarbyIngle: First resource I looked up doesn't exist anymore. Second was a my books, I had multiple for sale, and books were a tool I used IRL way more than computers, but it was cool to see my books doing well online and I added digital versions (kindle) seeing the need. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @srvingofspprt: I found a few online sources but I felt like it was missing the emotional aspect I was so strongly experiencing. It was really through connecting with others- online or in person- that I found the hope, strength & sanity I was seeking #wegohealthchat |
| Alan Brewington @abrewi3010 A2 patience ontop of patience is required for anything in healthcare. Problems can be worked but it’s on healthcare’s time. #WEGOHealthChat |
| Leslie Krongold, EdD @Leslie_GHF A1: Muscular Dystrophy Association had a private portal w/ synchronous chat but wasn't a positive experience. Another patient advocacy org started an asynchronous private group but still not very positive. The best has been patient-initiated groups on Facebook. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @Leslie_GHF: A1: A1: Muscular Dystrophy Association had a private portal w/ synchronous chat but wasn't a positive experience. Another patient advocacy org started an asynchronous private group but still not very positive. The best has been patient-initiated groups on Facebook. #WEGOHealthChat |
| Joshua E. Robinson @jrobinjrob A2 We Are Crohn's was great, it got taken down due to malware. The bigges thing for m that I learned is I was not alone. #wegohealthchat |
| Deeanne @twistedpsister A2. Super accurate. Research gives them new ideas all the time. My communities can be less so but are personal experiences #wegohealthchat |
| Kristen @srvingofspprt I learned there was a SERIOUS need for #PatientLeaders. Fortunately, #mentalhealth is discussed more now, but even 10 years ago, there were just generic resources written about #eatingdisorders - it wasn't relatable. #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A2. I think some resources were accurate some were not, but I used everything I found as conversation starters with my providers... and with any provider I met at conferences so that I could gather the data, learn, create connections and get better care! #WEGOHealthChat |
 | Annette McKinnon @anetto A2 Reading research papers on PubMed taught me to be more critical - not all research is relevant and useful. #wegohealthchat |
| Beth Morton @beth_morton A2: Because FB groups are heavily populated w/other pts, accuracy varies by group. Given I have a research background, I consider myself a well-read pt. I'm glad I have that filter through which to sift info bc there is/was some misinformation shared. #WegoHealthChat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
 | @jenvargas @jenvargas @wegohealth A1. When my mom was first diagnosed, I turned to @AmericanCancer's website which was a site I was already very familiar with. I knew better than to simple "Google" her condition, and I knew various 'MDs' of the web were not reliable. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @anetto: A2 Reading research papers on PubMed taught me to be more critical - not all research is relevant and useful. #wegohealthchat |
 | I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @beth_morton: A1: A1: My first resource was FB groups with other patients, then Twitter where I think I found more advocates, doctors, & researchers. #WEGOHealthChat |
| I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @beth_morton: A2: A2: Because FB groups are heavily populated w/other pts, accuracy varies by group. Given I have a research background, I consider myself a well-read pt. I'm glad I have that filter through which to sift info bc there is/was some misinformation shared. #WegoHealthChat |
| Social Health Network @socialhealthnet RT @beth_morton: A2: A2: Because FB groups are heavily populated w/other pts, accuracy varies by group. Given I have a research background, I consider myself a well-read pt. I'm glad I have that filter through which to sift info bc there is/was some misinformation shared. #WegoHealthChat |
| Alan Brewington @abrewi3010 A2 it took almost 8ish years to get a #rheumatoidarthritis diagnosis. I also fell off a cliff rock climbing. Wasn’t sure what to look for online in beginning #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @jenvargas: @wegohealth A1. When my mom was first diagnosed, I turned to @AmericanCancer's website which was a site I was already very familiar with. I knew better than to simple "Google" her condition, and I knew various 'MDs' of the web were not reliable. #WEGOHealthChat |
| Melissa VanHouten @melissarvh As far as the groups go, some info was accurate & some was not, but they gave me a starting point & directed me to organizations & credible sites. We have been & still are learning about #Gastroparesis together. #WegoHealthChat |
| Social Health Network @socialhealthnet We want to make sure to see ALL the tweets! So make sure to use the hashtag #WEGOHealthChat when you tweet your responses :) |
| I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @wegohealth: Question 2. Looking back at the first online sources you looked at, do you feel like they were accurate? What did you learn from them? #WEGOHealthChat |
| Melissa VanHouten @melissarvh @wegohealth Sorry, I had to delete the first response due to misspelling the name of my own disease! Turns out typing is not my strongest skill. :) #WegoHealthChat |
| Social Health Network @socialhealthnet Ok, on wards to question 3! #WEGOHealthChat |
| Annette McKinnon @anetto A2 If a research paper about RA treatment looks back as far as the 50's, can it be useful today? #wegohealthchat |
| @jenvargas @jenvargas @wegohealth A2. Mostly accurate, looking back now. Having a glossary of terms/conditions to translate all the doctor speak would've been VERY helpful! From what I could understand, it was helpful... #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @anetto: A2 If a research paper about RA treatment looks back as far as the 50's, can it be useful today? #wegohealthchat |
| Social Health Network @socialhealthnet RT @jenvargas: @wegohealth A2. Mostly accurate, looking back now. Having a glossary of terms/conditions to translate all the doctor speak would've been VERY helpful! From what I could understand, it was helpful... #WEGOHealthChat |
| Beth Morton @beth_morton @JackieZimm @wegohealth One of my coworkers once clued me into this fact and it made me feel 100% better. #wegohealthchat |
| Social Health Network @socialhealthnet Question 3. Working with #PatientLeaders, we find that inaccurate content online is a major problem for the community. Do you find a lot of inaccurate information about your condition area online? #WEGOHealthChat |
| Kristen @srvingofspprt @melissarvh @wegohealth Having a similar day over here! Is it Friday yet??? #WEGOHealthChat |
| Social Health Network @socialhealthnet There could be so many inaccurate sources. We hear a lot about “cures”, lotions, condition causes, people touting themselves to be experts, etc #WEGOHealthChat |
| Leslie Krongold, EdD @Leslie_GHF A3: It's important to have well-informed "ambassadors" monitoring or engaging in the Facebook groups to combat the incorrect information. I am constantly providing links to the "facts" about our disease. Support group facilitators play this role well. #WEGOHealthChat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @Leslie_GHF: A3: A3: It's important to have well-informed "ambassadors" monitoring or engaging in the Facebook groups to combat the incorrect information. I am constantly providing links to the "facts" about our disease. Support group facilitators play this role well. #WEGOHealthChat |
 | Achy Smile Feels Migraine @achysmileblog @wegohealth A1. Facebook. I was new to the platform and not finding info about Hemiplegic Migraine that I could understand. I made life-lasting friendships. I wasn't referred, I used the search bar for "Hemiplegic Migraine" and requested to join a group. #WEGOHealthChat |
| Joshua E. Robinson @jrobinjrob A3 I use to find a lot of inaccurate info, not so much anymore. #wegohealthchat |
| Alan Brewington @abrewi3010 A3 I wish I had a nickel for every shirtless dude that thought they could cure my #rheumatoidarthritis with some magic mixer! #wegohealthchat |
| Social Health Network @socialhealthnet What do you think changed to make it more accurate @jrobinjrob? #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A3. YES! The 1 that gets me most is they use a pain scale from 1970s & its 40 yrs OLD, The scale is now used 4 acute pain conditions & people still pass the old info around like 'we are the worst pain condition'... its bad, but most chronic conditions are just bad #WEGOHealthChat |
| @jenvargas @jenvargas @wegohealth A3. YES! A lot of inaccurate information as well as misleading offers of 'help,' via crowdsourcing sites, (sponsored) blogs, and clickable/clickbait ads. Be smart, everyone! #WEGOHealthChat |
| Social Health Network @socialhealthnet Anyone else see this occurring in their community? #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @abrewi3010: A3 I wish I had a nickel for every shirtless dude that thought they could cure my #rheumatoidarthritis with some magic mixer! #wegohealthchat |
| Beth Morton @beth_morton In the #migraine community, there's a lot of information that perpetuates stigma and inaccuracies. There are also outdated terms like "migraine headache" that we try to move away from. All tend to make migraine seem less serious than it can actually be. #WEGOHealthChat |
| Annette McKinnon @anetto A3 Sometimes information about #PatientEngagement is tone deaf, or people assume an online survey is meaningful engagement #wegohealthchat |
| Kristen @srvingofspprt YASSSS! Diet culture has led to a tremendnous amount of "health" articles that are pure rubbish! Which in turn, leads to more #eatingdisorders. However, I'm grateful to say more patients like @lindseyhallblog @_kellyu @LeenahBeenah are speaking out #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @jenvargas: @wegohealth A3. YES! A lot of inaccurate information as well as misleading offers of 'help,' via crowdsourcing sites, (sponsored) blogs, and clickable/clickbait ads. Be smart, everyone! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @beth_morton: In the #migraine community, there's a lot of information that perpetuates stigma and inaccuracies. There are also outdated terms like "migraine headache" that we try to move away from. All tend to make migraine seem less serious than it can actually be. #WEGOHealthChat |
| Alan Brewington @abrewi3010 A3 Facebook seems to be good a developing cliques. It’s worse than high school I think. Twitter polices better. #wegohealthchat |
| I Slapped FedSoc & Ouiser Boudreaux💉💉💉💉😷🇺🇦 @nwayne66 RT @beth_morton: In the #migraine community, there's a lot of information that perpetuates stigma and inaccuracies. There are also outdated terms like "migraine headache" that we try to move away from. All tend to make migraine seem less serious than it can actually be. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @anetto: A3 Sometimes information about #PatientEngagement is tone deaf, or people assume an online survey is meaningful engagement #wegohealthchat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
| @jenvargas @jenvargas @JackieZimm @wegohealth ...or they self-title as "influencers." Some people don't know the difference or how to verify the source and that gets... tricky. To say the LEAST! #WEGOHealthChat |
| Joshua E. Robinson @jrobinjrob A3a If I find inaccurate info or people say they know a cure , I shut that stuff down . #wegohealthchat |
| Social Health Network @socialhealthnet RT @srvingofspprt: YASSSS! Diet culture has led to a tremendnous amount of "health" articles that are pure rubbish! Which in turn, leads to more #eatingdisorders. However, I'm grateful to say more patients like @lindseyhallblog @_kellyu @LeenahBeenah are speaking out #WEGOHealthChat |
| Melissa VanHouten @melissarvh Tons of misinformation! We, as a community, fight this the best we can. We have even contacted sites/orgs to give them correct info. It is harmful to patients when people are misguided & inaccuracies are spread. #Gastroparesis #WegoHealthChat |
| Beth Morton @beth_morton Yes, I've commented on a couple recent articles touting #Aimovig as a #migraine cure. I have to explain that there is no cure, it's simply a new treatment. #wegohealthchat |
| Achy Smile Feels Migraine @achysmileblog @wegohealth A2. I learned that most people shared their personal experiences & didn't really research or want to know why/how things were happening to them. So I turned to Google Scholar to see more technical information about my condition...along with a medical dictionary. #WEGOHealthChat |
| Deeanne @twistedpsister A3 yes, too many “cures” that someone’s cousin’s dad’s dog used. Hard to weed through! #wegohealthchat |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: A1. I didnt. I hardly used a computer at work (head cheer/dance coach at #WSU - #GoCougs). Life was more about physical activities & in person interaction for me. I didnt start using a computer for online sources until I got my first remission in 2009/early 2010 #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A2. I think some resources were accurate some were not, but I used everything I found as conversation starters with my providers... and with any provider I met at conferences so that I could gather the data, learn, create connections and get better care! #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A3. YES! The 1 that gets me most is they use a pain scale from 1970s & its 40 yrs OLD, The scale is now used 4 acute pain conditions & people still pass the old info around like 'we are the worst pain condition'... its bad, but most chronic conditions are just bad #WEGOHealthChat |
| Melissa VanHouten @melissarvh RT @jenvargas: @wegohealth A3. YES! A lot of inaccurate information as well as misleading offers of 'help,' via crowdsourcing sites, (sponsored) blogs, and clickable/clickbait ads. Be smart, everyone! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @melissarvh: Tons of misinformation! We, as a community, fight this the best we can. We have even contacted sites/orgs to give them correct info. It is harmful to patients when people are misguided & inaccuracies are spread. #Gastroparesis #WegoHealthChat |
| Melissa VanHouten @melissarvh RT @BarbyIngle: A3. YES! The 1 that gets me most is they use a pain scale from 1970s & its 40 yrs OLD, The scale is now used 4 acute pain conditions & people still pass the old info around like 'we are the worst pain condition'... its bad, but most chronic conditions are just bad #WEGOHealthChat |
| Social Health Network @socialhealthnet Continuation of question 3 - whenever you see these inaccurate sources. Do you do anything about it? (There's no wrong answer here! Don't worry!!) #WEGOHealthChat |
 | Lindsey Hall @lindseyhallblog RT @srvingofspprt: YASSSS! Diet culture has led to a tremendnous amount of "health" articles that are pure rubbish! Which in turn, leads to more #eatingdisorders. However, I'm grateful to say more patients like @lindseyhallblog @_kellyu @LeenahBeenah are speaking out #WEGOHealthChat |
| Annette McKinnon @anetto A3 Learned a lot from CME's that were sponsored by pharma, and meant for doctors. It was very effective, though not holistic #wegohealthchat |
| Leslie Krongold, EdD @Leslie_GHF A3: I do trust the 2 patient advocacy orgs associated with my disease. I direct people to specific pages on their websites to combat inaccurate info and/or ignorance. #WEGOHealthChat |
 | Sakinah Kaiser (She/Her) @themuslimhippie RT @beth_morton: In the #migraine community, there's a lot of information that perpetuates stigma and inaccuracies. There are also outdated terms like "migraine headache" that we try to move away from. All tend to make migraine seem less serious than it can actually be. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @anetto: A3 Learned a lot from CME's that were sponsored by pharma, and meant for doctors. It was very effective, though not holistic #wegohealthchat |
| Alan Brewington @abrewi3010 A3 I like to publicly call out these people. Like snakes, they don’t want to operate in the sunlight #wegohealthchat |
| @jenvargas @jenvargas @wegohealth A3. YES! I report all phishy and spammy tweets, posts, emails, and images - always - with the hope that if someone else sees it, they have already done the same. That's the only way to combat and eradicate the noise/garbage. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @abrewi3010: A3 I like to publicly call out these people. Like snakes, they don’t want to operate in the sunlight #wegohealthchat |
| Social Health Network @socialhealthnet RT @Leslie_GHF: A3: A3: I do trust the 2 patient advocacy orgs associated with my disease. I direct people to specific pages on their websites to combat inaccurate info and/or ignorance. #WEGOHealthChat |
| Social Health Network @socialhealthnet Get ready for Question 4! #WEGOHealthChat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
| @jenvargas @jenvargas AMEN, SISTER! Don't believe everything you read online. Tried and true should always come through. #WEGOHealthChat |
| Beth Morton @beth_morton Oh, I struggle with this, esp. in FB groups. I feel like there is one where I'm always the person correcting things. I should probably just leave the group for my own sanity, but I feel a responsibility! I'm more mindful of when I jump in now. Pick my battles. #wegohealthchat |
 | #22qAwarenessDays @22qAwarenessDay @wegohealth A3: Most def but when your child has condition where there is no consensus on name, prev & little awareness its not surprising Recently, a UK article quoted #22q11DS as extremely rare, story picked up by an Indian newspaper..myth perpetuated Likey prev1:1000~2000 #wegohealthchat |
| Social Health Network @socialhealthnet Question 4. When looking through all of the resources and content online for your condition area, what do you believe constitutes a resource that you would pass along to your community? #WEGOHealthChat |
| Annette McKinnon @anetto A3 Now that I can recognize bad info I just go around it/ignore it/step over it. No more apple cider vinegar/gin raisins! #wegohealthchat |
| Barby Ingle Official @BarbyIngle I try to never call someone out in public, because feelers get hurt and you cant change a mind against its will. If I ever do, its always a private message or a separate fact post that is not connected 2 their message in anyway pointing out facts & hope they see #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @BarbyIngle: I try to never call someone out in public, because feelers get hurt and you cant change a mind against its will. If I ever do, its always a private message or a separate fact post that is not connected 2 their message in anyway pointing out facts & hope they see #WEGOHealthChat |
| Achy Smile Feels Migraine @achysmileblog @wegohealth A3. I only go to specific websites for facts about my condition. It took me a while to figure that out. I would share anything I'd come across, not worrying about the source. Then I realized some info was a scare-tactic or completely false. Know your sources. #WEGOHealthChat |
| Leslie Krongold, EdD @Leslie_GHF A4: It's a process of vetting the source -- is it a reputable organization? If it's an individual, who are they associated with? Like any relationship in life, we all have a way of assessing credibility, or not. #wegohealthchat |
| Social Health Network @socialhealthnet RT @Leslie_GHF: A4: A4: It's a process of vetting the source -- is it a reputable organization? If it's an individual, who are they associated with? Like any relationship in life, we all have a way of assessing credibility, or not. #wegohealthchat |
| Leslie Krongold, EdD @Leslie_GHF @RareCandace But there is no much to learn from the "patient" community...self-care practices that may not receive funding for scientific research. #WEGOHealthChat |
| Social Health Network @socialhealthnet Continuation of Question 4 - Is there a way that a content creator can create “trust” with you with their resource? #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A4. When I find a new fact, I source it by 3 before sharing. I want to know its legit, finding reliable sources that also show fact is important 2 me before sharing... I talked about a med 2 soon before & turned out 2 b a bad med 4 me & community, #LessonLearned #WEGOHealthChat |
| Achy Smile Feels Migraine @achysmileblog @wegohealth A3 cont'd - That is why I am very picky about who I link to in my articles on my blog https://t.co/yb2GCccqAf. I do my best to only select highly trusted sources. #WEGOHealthChat |
| Melissa VanHouten @melissarvh If an article or site points to valid research studies or well-known & respected medical sites & organizations, this is generally a good source. Medical universities, disease-related conferences & associations, & long-standing nonprofits are also good bets. #WegoHealthChat |
| Social Health Network @socialhealthnet RT @BarbyIngle: A4. When I find a new fact, I source it by 3 before sharing. I want to know its legit, finding reliable sources that also show fact is important 2 me before sharing... I talked about a med 2 soon before & turned out 2 b a bad med 4 me & community, #LessonLearned #WEGOHealthChat |
| Achy Smile Feels Migraine @achysmileblog RT @beth_morton: In the #migraine community, there's a lot of information that perpetuates stigma and inaccuracies. There are also outdated terms like "migraine headache" that we try to move away from. All tend to make migraine seem less serious than it can actually be. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A4. When I find a new fact, I source it by 3 before sharing. I want to know its legit, finding reliable sources that also show fact is important 2 me before sharing... I talked about a med 2 soon before & turned out 2 b a bad med 4 me & community, #LessonLearned #WEGOHealthChat |
| Melissa VanHouten @melissarvh RT @Leslie_GHF: A4: A4: It's a process of vetting the source -- is it a reputable organization? If it's an individual, who are they associated with? Like any relationship in life, we all have a way of assessing credibility, or not. #wegohealthchat |
| Alan Brewington @abrewi3010 A4 I don’t understand hard science, I do understand the patient life. Curators need learn how to create quality content within those parameters #wegohealthchat |
 | healing.ly @livehealingly RT @Leslie_GHF: A4: A4: It's a process of vetting the source -- is it a reputable organization? If it's an individual, who are they associated with? Like any relationship in life, we all have a way of assessing credibility, or not. #wegohealthchat |
| Beth Morton @beth_morton I tend to share a lot of #migraine research, even the less rigorous stuff if its interesting/innovative but I'll caveat it with a warning about no comparison group or small sample. It can be hard to give much context on Twitter, though. #wegohealthchat |
| Social Health Network @socialhealthnet Do you think co-creating with patients is the best? Or is there a better way? #WEGOHealthChat |
| Leslie Krongold, EdD @Leslie_GHF A4: Just an FYI - not all peer-reviewed research studies are alike. Some are funded by entities that have much to gain by certain "outcomes." #wegohealthchat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
| Kristen @srvingofspprt RT @abrewi3010: A4 I don’t understand hard science, I do understand the patient life. Curators need learn how to create quality content within those parameters #wegohealthchat |
| @jenvargas @jenvargas @abrewi3010 @wegohealth Good for you! I do too... then come the trolls. Sometimes I'll battle, other days I'll just block... for my own sanity. #WEGOHealthChat |
| Social Health Network @socialhealthnet Ok, moving onto question 5 #WEGOHealthChat |
| Beth Morton @beth_morton My secrets are to set up Google alerts, follow a bunch of great migraine specialists, follow organizations that sponsor annual conferences, and follow journals, etc. Resources like @MigraineAgain do a great job distilling research for readers, too. #wegohealthchat |
| Social Health Network @socialhealthnet Question 5. Do you feel like there are resource gaps in your community that need to be filled? If so, who do you think is best to fill these gaps? #WEGOHealthChat |
| Alan Brewington @abrewi3010 Co-creating/design is at its best when everyone is included, not just certain titles/labels. Everyone included is the key methodology. #WEGOHealthChat |
| Annette McKinnon @anetto A4 To create trust a content creator can include evidence for facts, and include my voice/patient voices in other areas. #wegohealthchat |
| @jenvargas @jenvargas @wegohealth A4. Content which has a lot of discussion surrounding it, from both professionals, Caregivers, and Patients alike. The dialog will flesh out the original advice/idea, then I can possibly tailor it and work it into my own caring regime. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @abrewi3010: Co-creating/design is at its best when everyone is included, not just certain titles/labels. Everyone included is the key methodology. #WEGOHealthChat |
| Achy Smile Feels Migraine @achysmileblog RT @beth_morton: My secrets are to set up Google alerts, follow a bunch of great migraine specialists, follow organizations that sponsor annual conferences, and follow journals, etc. Resources like @MigraineAgain do a great job distilling research for readers, too. #wegohealthchat |
| Social Health Network @socialhealthnet RT @anetto: A4 To create trust a content creator can include evidence for facts, and include my voice/patient voices in other areas. #wegohealthchat |
| #22qAwarenessDays @22qAwarenessDay @wegohealth A4: Look at research, and info about the 200 #22q11DS sydromic symptoms .. published by trusted 'institutes', check commentary about research/ask researchers Use hospital resources but can be inaccurate Best resource is patient/family/personal experience #wegohealthchat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @22qAwarenessDay: @wegohealth A4: @wegohealth A4: Look at research, and info about the 200 #22q11DS sydromic symptoms .. published by trusted 'institutes', check commentary about research/ask researchers Use hospital resources but can be inaccurate Best resource is patient/family/personal experience #wegohealthchat |
| Alan Brewington @abrewi3010 @jenvargas @wegohealth Sanity is key in my strength of fight too! #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A5. As I see the gap, I work on unique ideas to fill them I think they are best filled by people who are invested in the condition (patients, caregivers, providers, insurance co's, pharmaceuticals, legislators) #WEGOHealthChat |
| Kristen @srvingofspprt RT @Leslie_GHF: A4: A4: Just an FYI - not all peer-reviewed research studies are alike. Some are funded by entities that have much to gain by certain "outcomes." #wegohealthchat |
| Annette McKinnon @anetto A5 It's artificial to split us into disease communities. With chronic disease we have a lot in common- need to work together #wegohealthchat |
| Joshua E. Robinson @jrobinjrob A5 There are always gaps, IBD is global so my opinion the poorer nations will have info not up to date. #wegohealthchat |
| Social Health Network @socialhealthnet RT @BarbyIngle: A5. As I see the gap, I work on unique ideas to fill them I think they are best filled by people who are invested in the condition (patients, caregivers, providers, insurance co's, pharmaceuticals, legislators) #WEGOHealthChat |
| @jenvargas @jenvargas @wegohealth A4. That's where a relationship of trust should begin to form. Trust is earned and when you identify with a content creator of any kind, if the creator is wise, they will listen more than anything. A shared experience is personal. So's the trust. #WEGOHealthChat |
| Social Health Network @socialhealthnet Love this! Who else agrees? #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @jenvargas: @wegohealth A4. That's where a relationship of trust should begin to form. Trust is earned and when you identify with a content creator of any kind, if the creator is wise, they will listen more than anything. A shared experience is personal. So's the trust. #WEGOHealthChat |
| Beth Morton @beth_morton A5: Great question! I'm not sure if this is a resource gap, but I'd like to get a better sense that patients are helping to inform the direction of #migraine research. Sure, we all want better treatments and, heck, a cure, but short of that, what else do we want? #wegohealthchat |
| Leslie Krongold, EdD @Leslie_GHF A5: Although I love Facebook, I think in-person support groups are more powerful. Having a rare condition, it's often hard to do this. Building trust/relationships in person combats ignorance. #wegohealthchat |
| Social Health Network @socialhealthnet RT @beth_morton: A5: A5: Great question! I'm not sure if this is a resource gap, but I'd like to get a better sense that patients are helping to inform the direction of #migraine research. Sure, we all want better treatments and, heck, a cure, but short of that, what else do we want? #wegohealthchat |
| Social Health Network @socialhealthnet RT @Leslie_GHF: A5: A5: Although I love Facebook, I think in-person support groups are more powerful. Having a rare condition, it's often hard to do this. Building trust/relationships in person combats ignorance. #wegohealthchat |
| Melissa VanHouten @melissarvh Oh, my, yes! We'd love free access 2 journals, webinars, etc. which point 2 innovative treatments/approaches. We'd love more engagement w/providers, 2 be invited 2 conferences, allowed 2 speak to med students, etc. Need to get info from them 2 online community. #WegoHealthChat |
| Joshua E. Robinson @jrobinjrob @wegohealth #WEGOHealthChat Awesome |
| Social Health Network @socialhealthnet RT @melissarvh: Oh, my, yes! We'd love free access 2 journals, webinars, etc. which point 2 innovative treatments/approaches. We'd love more engagement w/providers, 2 be invited 2 conferences, allowed 2 speak to med students, etc. Need to get info from them 2 online community. #WegoHealthChat |
 | Gone @DrJBop RT @BarbyIngle: A5. As I see the gap, I work on unique ideas to fill them I think they are best filled by people who are invested in the condition (patients, caregivers, providers, insurance co's, pharmaceuticals, legislators) #WEGOHealthChat |
| Social Health Network @socialhealthnet With a few minutes left, let's close out today’s discussion with Question 6. #WEGOHealthChat |
| Beth Morton @beth_morton @melissarvh All of this! Yesss! #wegohealthchat |
| @jenvargas @jenvargas @wegohealth A5. ABSOLUTELY! Little and specific things often get forgotten; help with laundry, handyman type fixes around the house, cleaning/keeping an area sterile, having someone to talk to. Having a (free?) network of available volunteers in these areas would be HUGE. #WEGOHealthChat |
| #22qAwarenessDays @22qAwarenessDay @wegohealth Yes. Many. But there is still so much to learn and understand. Researchers like @ChawnerSamuel @hayleyamoulding are helping by changing the lang of science. More patient advocacy required, more awareness and support/voice/nhs/government backing required. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @jenvargas: @wegohealth A5. ABSOLUTELY! Little and specific things often get forgotten; help with laundry, handyman type fixes around the house, cleaning/keeping an area sterile, having someone to talk to. Having a (free?) network of available volunteers in these areas would be HUGE. #WEGOHealthChat |
| Social Health Network @socialhealthnet Question 6. If you could create 1 dream resource for your community, what would it be? What elements would it include to make you want to share it with your community? #WEGOHealthChat |
| Melissa VanHouten @melissarvh RT @jenvargas: @wegohealth A5. ABSOLUTELY! Little and specific things often get forgotten; help with laundry, handyman type fixes around the house, cleaning/keeping an area sterile, having someone to talk to. Having a (free?) network of available volunteers in these areas would be HUGE. #WEGOHealthChat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
| Alan Brewington @abrewi3010 A5 to often advocacy is just about the negative. To often there’s guilt for having a good day or for going skiing. Everyone included needs to include everything about story, not just bad #WEGOHealthChat |
| Barby Ingle Official @BarbyIngle A6. A cure! I would share it worldwide. #WEGOHealthChat |
| Leslie Krongold, EdD @Leslie_GHF A6: Doctors & patient advocacy orgs promoting/modeling self-care practices related to diet, physical movement, relaxation, etc. in addition to the search for "cures" would be a DREAM! #wegohealthchat |
| Social Health Network @socialhealthnet RT @BarbyIngle: A6. A cure! I would share it worldwide. #WEGOHealthChat |
| Melissa VanHouten @melissarvh RT @BarbyIngle: A6. A cure! I would share it worldwide. #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A5. As I see the gap, I work on unique ideas to fill them I think they are best filled by people who are invested in the condition (patients, caregivers, providers, insurance co's, pharmaceuticals, legislators) #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A6. A cure! I would share it worldwide. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @Leslie_GHF: A6: A6: Doctors & patient advocacy orgs promoting/modeling self-care practices related to diet, physical movement, relaxation, etc. in addition to the search for "cures" would be a DREAM! #wegohealthchat |
 | iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A6. A cure! I would share it worldwide. #WEGOHealthChat |
| Annette McKinnon @anetto A6 Actually would like good relationship management software (CRM). Much easier to work with proper tools. #wegohealthchat |
| #22qAwarenessDays @22qAwarenessDay @melissarvh @wegohealth A5: @melissarvh Most definitely. I have even tried to gain free access as an advocacy group but no luck. But as well as access, we need accessibility. Patient/participant summaries in less technical language..aim/outcome/clinical implications/next steps #WEGOHealthChat |
| Social Health Network @socialhealthnet #WEGOHealthChat |
 | Must Stop MS! @MustStopMS Sorry all. Late to the party today! Hope you don’t mind 😊 #WEGOHealthChat |
| @jenvargas @jenvargas @wegohealth A6. I'd create the best darn online HUB and app for Caregivers in every area who need help from general to specific needs including; transportation, medication, insurance, in-person gatherings, hospital meet & greets, informational sessions, and how to classes #WEGOHealthChat |
| Social Health Network @socialhealthnet @a_woundedhealer 2nd Tuesday of every month at 1pm ET! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @anetto: A6 Actually would like good relationship management software (CRM). Much easier to work with proper tools. #wegohealthchat |
| Barby Ingle Official @BarbyIngle :) This is exactly what we do at #iPain, while other orgs are working on cures we are working on projects that make living life better daily with the current state of disease. https://t.co/sxETR2ejHa #WEGOHealthChat |
| Melissa VanHouten @melissarvh Agreed. #WegoHealthChat |
| Must Stop MS! @MustStopMS RT @wegohealth: Question 1. Whenever you first started your health journey, which online sources did you turn to? How did you find them? Did anyone refer them to you? #WEGOHealthChat |
| @jenvargas @jenvargas @BarbyIngle @wegohealth I'd like to sign up for a cure, please! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @jenvargas: @wegohealth A6. I'd create the best darn online HUB and app for Caregivers in every area who need help from general to specific needs including; transportation, medication, insurance, in-person gatherings, hospital meet & greets, informational sessions, and how to classes #WEGOHealthChat |
| Melissa VanHouten @melissarvh RT @wegohealth: @a_woundedhealer 2nd Tuesday of every month at 1pm ET! #WEGOHealthChat |
| Annette McKinnon @anetto A6 Another dream resource would be proper funding for patient and patient advisor groups. #SickOfWalkathons #wegohealthchat |
| Must Stop MS! @MustStopMS A1 - after diagnosed I immediately went to Dr. Google unfortunately. Wikipedia was scary. Online forums and other patients helped me the most. #WEGOHealthChat |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: :) This is exactly what we do at #iPain, while other orgs are working on cures we are working on projects that make living life better daily with the current state of disease. https://t.co/sxETR2ejHa #WEGOHealthChat |
| Kristen @srvingofspprt @MustStopMS We'll let it slide... ;) #WEGOHealthChat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: :) This is exactly what we do at #iPain, while other orgs are working on cures we are working on projects that make living life better daily with the current state of disease. https://t.co/sxETR2ejHa #WEGOHealthChat |
| Must Stop MS! @MustStopMS RT @wegohealth: Question 2. Looking back at the first online sources you looked at, do you feel like they were accurate? What did you learn from them? #WEGOHealthChat |
| Social Health Network @socialhealthnet Well, we're at the top of the hour! Feel free to wrap up your thoughts by using CT. We appreciate you all joining in the discussion #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @BarbyIngle: :) This is exactly what we do at #iPain, while other orgs are working on cures we are working on projects that make living life better daily with the current state of disease. https://t.co/sxETR2ejHa #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @anetto: A6 Another dream resource would be proper funding for patient and patient advisor groups. #SickOfWalkathons #wegohealthchat |
| Must Stop MS! @MustStopMS A2 - at the time I assumed all info was accurate but quickly learned there are many misconceptions out there and it’s easy to find sites that aren’t reputable. #WEGOHealthChat |
| Melissa VanHouten @melissarvh Many thanks to @WegoHealth for hosting today's most informative & engaging chat! Appreciate the opportunity to join! #wegohealthchat |
| Social Health Network @socialhealthnet Thank you to everyone who came to #WEGOHealthChat today! So great to hear what you're up to & be apart of a great idea exchange! If you'd like to do this more often, be sure to join our private FB group, available only to Network members! https://t.co/k79PgLJO5o |
| Must Stop MS! @MustStopMS @srvingofspprt Yesss...#WegoHealthChat https://t.co/mEgEZ8QJiq |
| Must Stop MS! @MustStopMS RT @wegohealth: Question 3. Working with #PatientLeaders, we find that inaccurate content online is a major problem for the community. Do you find a lot of inaccurate information about your condition area online? #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @melissarvh: Many thanks to @WegoHealth for hosting today's most informative & engaging chat! Appreciate the opportunity to join! #wegohealthchat |
| Social Health Network @socialhealthnet Make sure to follow today's special guest @J4theablerblog1 & make sure to check out The Abler blog #WEGOHealthChat https://t.co/cPaCsjXbN1 #WEGOHealthChat |
| Must Stop MS! @MustStopMS A3 - there are a lot of places to get innacurate information. Sadly, some are even run by people within our own patient communities. It’s amazing how much faster false information spreads than reputable data. A lot of time can be spent correcting falsehoods. #WEGOHealthChat |
| Social Health Network @socialhealthnet Don't forget, we have #wegohealthchat the second Tuesday of every month at 1pm ET. Mark it on your calendar 📆! |
| @jenvargas @jenvargas @abrewi3010 @wegohealth For sure! #WEGOHealthChat https://t.co/lmqRpaz4KR |
 | Martin Reed, MEd, CHES®, CCSH @insomniacoach @wegohealth A3. So many sleep-related articles continue to spread the myth that we all need 8 hours of sleep when there is no scientific evidence to support this. Such statements simply exacerbate sleep-related worries for those struggling with insomnia. #WEGOHealthChat |
 | Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: :) This is exactly what we do at #iPain, while other orgs are working on cures we are working on projects that make living life better daily with the current state of disease. https://t.co/sxETR2ejHa #WEGOHealthChat |
| Must Stop MS! @MustStopMS RT @anetto: A5 It's artificial to split us into disease communities. With chronic disease we have a lot in common- need to work together #wegohealthchat |
| @jenvargas @jenvargas @wegohealth Great chat as always. Thanks #WEGOHealthChat folks! |
| Social Health Network @socialhealthnet @ZHeatherChamp 2nd Tuesday of every month #WEGOHealthChat |
 | Margaret Fleming @mlsfleming2 RT @anetto: A4 To create trust a content creator can include evidence for facts, and include my voice/patient voices in other areas. #wegohealthchat |
 | 𝙀-𝙇𝙀𝙀 𝙇𝙊𝙑𝙀 💋 @E_LeeLove1 RT @melissarvh: Many thanks to @WegoHealth for hosting today's most informative & engaging chat! Appreciate the opportunity to join! #wegohealthchat |
 | Dawn M Gibson @DawnMGibson RT @anetto: A6 Another dream resource would be proper funding for patient and patient advisor groups. #SickOfWalkathons #wegohealthchat |
#WEGOHealthChat content from Twitter.