#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 to empowered patients. |
 | Lorrie @LorrieForseth RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with others on the topic. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat Hi all! Attending a webinar so can’t join but wanted to say hi! Such an important topic today, wish I could join! #patientchat |
| Patient Chat @patientchat Happy Friday! I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat |
| Lorrie @LorrieForseth @patientchat Good morning, I'm Lorrie , joining in from Vancouver Canada 👋 #patientchat |
 | Simply Kristy @SimplyKristyD Hello Everyone 👋W. I'm Kristy, a wife, mom, rare disease patient and founder (@cshealthapp). Looking forward to today's chat #patientchat |
| Simply Kristy @SimplyKristyD @LorrieForseth @patientchat Hello from Ontario :) #patientchat |
| Patient Chat @patientchat I am pleased to welcome our guest, Teresa @TLHagan! #patientchat Can't wait to dive into this discussion! |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Simply Kristy @SimplyKristyD @TLHagan @patientchat @UPittNursing It's nice to meet you, Teresa. Looking forward to chatting with you today #patientchat |
| Patient Chat @patientchat @ADanGrenier Appreciate you dropping in! #patientchat |
| Lorrie @LorrieForseth @TLHagan @patientchat Nice to virtually meet you as well Teresa :) #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| Patient Chat @patientchat Today's #patientchat is a “Empowerment and Your Healthcare Team” Empowered #patientchat https://t.co/v3ZDx9UkIG |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of your answer - hard to remember but helpful #patientchat |
| Patient Chat @patientchat T1: How easy is it for you to speak openly with your healthcare team? #patientchat https://t.co/CAWgK4KHvp |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat @TLHagan @BarbyIngle @JBBC @kreisr1 @Madvocator @ZebraOrphans @LorrieForseth @Memej99 @carlyflumer @JillZitzewitz Hi Adam! 👋 I hope you are doing well. #patientchat |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi all. I'm Adam, joining from Idaho. It's a mess out here. Might need someone to send help for us all! #PatientChat |
| Lorrie @LorrieForseth @patientchat A1 : We are very fortunate to have a great healthcare team when dealing with my loved ones Epilepsy/seizures , it took a while to find the right neurologist, very easy to talk to once we connected. #patientchat |
 | Alan Brewington @abrewi3010 A1 Pretty easy. Despite these white coats they are just humans like you and I. #patientchat |
| Lorrie @LorrieForseth @RareDiseaseDad @patientchat @TLHagan @BarbyIngle @JBBC @kreisr1 @Madvocator @ZebraOrphans @Memej99 @carlyflumer @JillZitzewitz Hey Adam ! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat @TLHagan Thanks for joining, Teresa! Nice to virtually meet you here. I appreciate your willingness to jump in and lead this discussion with @patientchat. #PatientChat |
| Alan Brewington @abrewi3010 @TLHagan Thank you! #patientchat |
| Simply Kristy @SimplyKristyD T1a: It is very easy for me to speak openly to my healthcare team because I have been working for years to cultivate and foster open communication. #patientchat |
| Simply Kristy @SimplyKristyD T1b: It took a while to get them onboard with the fact that I am an active member of my care team and will not settle for less than mutual respect #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A1: This is tricky. It depends on the person. One doctor on my healthcare team questions & doubts my experiences because they haven't seen that before for someone with my disease. They also get upset with support methods they didn't prescribe, even if they help me. #PatientChat |
| Patient Chat @patientchat T2: How easy is it for you to work with your healthcare team in making decisions about your care? #patientchat https://t.co/HE1ZlGFJH6 |
| Alan Brewington @abrewi3010 T#1 I do know that since I’m 6”5’ it’s easy for me to get attention if I want. Due to my size it’s hard to ignore me. #patientchat |
| Lorrie @LorrieForseth @patientchat A2: Your healthcare team has your best interest at heart , sometimes it's not always easy to discuss some topics ( example SUDEP ) , important to work with them to learn about preventive measures. Sudden Unexpected Death in Epilepsy. #patientchat |
| Simply Kristy @SimplyKristyD T2a: I am a fairly outspoken patient. I listen to understand and ask questions that will help me make decisions about my care. #patientchat. |
| Simply Kristy @SimplyKristyD T2b: I also try to ensure that my healthcare team understands my health goals throughout our relationship so when it comes time to make a decision I can feel comfortable that they are looking at me as a whole person versus just my diagnosis #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @SimplyKristyD While it's not good that it takes this kind of effort & convincing for them to get onboard, it's nice that it did some good after you put in the work. Better than the alternative. Mutual respect is key! #PatientChat |
| Patient Chat @patientchat T3: How comfortable do you feel sharing information with your healthcare team (for example new research you’ve found, your own observations, etc) ? #patientchat https://t.co/w8C0wTsTJA |
| Simply Kristy @SimplyKristyD @TLHagan And those goals can, and do, change over time. So the open communication is critical. I am very respectful of the expertise they bring to my care, and I expect for them to listen and appreciate that I know my body/how my condition impacts me the best. .#patientchat |
| Lorrie @LorrieForseth @patientchat A3 : At the start it can be a little nerve wracking wanting to share information you've discovered on the internet, but it's important to hear your healthcare providers take on it then you can proper decisions. Epilepsy Matters #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A2: It can be a challenge. I have so many different people on my team in different parts of the US. Because there's no cure/treatment that is FDA approved, & because my disease varies so much from person to person, care decisions seem to fall back on me a lot. #PatientChat |
| Patient Chat @patientchat RT @RareDiseaseDad: @SimplyKristyD While it's not good that it takes this kind of effort & convincing for them to get onboard, it's nice that it did some good after you put in the work. Better than the alternative. Mutual respect is key! #PatientChat |
| Patient Chat @patientchat RT @SimplyKristyD: @TLHagan And those goals can, and do, change over time. So the open communication is critical. I am very respectful of the expertise they bring to my care, and I expect for them to listen and appreciate that I know my body/how my condition impacts me the best. .#patientchat |
| Alan Brewington @abrewi3010 T#2 I like to believe it’s getting easier with each passing day & experience. I spend a lot of time/effort telling my entire story (good and bad) which helps my care #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad Multi-jurisdiction care really puts the onus on patients. It's up to us to ensure our medical records are kept up to date and shared among the various specialists #patientchat |
| Alan Brewington @abrewi3010 T#3 my #rheumy just accepts that part of my visit will be about new research/drugs that I’ve found. #patientchat |
| Lorrie @LorrieForseth @TLHagan @patientchat Agreed . If we don't ask , we won't know . #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A3: Another "it depends" answer (my theme for today, haha). For some members of my team, I'm able to do this, no problem. For one member, I shy away/don't bother at all because I'm dismissed immediately. I know this going in, yet it still doesn't make it any easier. #PatientChat |
| Patient Chat @patientchat T4: How does your healthcare team empower you to make decisions about your care? #patientchat https://t.co/bM0Zb6DWqy |
| Simply Kristy @SimplyKristyD T3: Very comfortable. That is a part of the mutual respect. I am a rare disease patient so often I am more well versed on my condition then some of my specialists are. I am always grateful when my physicians are interested in the research I share. #patientchat |
| Patient Chat @patientchat @RareDiseaseDad I hate to hear or anyone being dismissed by any member of their healthcare team. In no way is that ever acceptable. I’m happy you have members of your healthcare that always have open ears to listen! #patientchat |
 | Lillian Lake - Host of #SoulNestingChat @llake @patientchat A3 That depends. With my naturopathic doctor - very comfortable. Mainstream doctors, I stay guarded about what I share. I'm completely done with being bullied. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: @RareDiseaseDad I hate to hear or anyone being dismissed by any member of their healthcare team. In no way is that ever acceptable. I’m happy you have members of your healthcare that always have open ears to listen! #patientchat |
| Patient Chat @patientchat @SimplyKristyD Love to hear that you’ve had experiences where your physicians are interested in what you have to say including sharing research! That’s how it should be, but unfortunately we still have work to do. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat @RareDiseaseDad Agree that it's not acceptable, but dismissal seems to be accepted by the general healthcare system. #patientchat |
| Alan Brewington @abrewi3010 T#4 for the most part they understand my decisions are based on my quality of life at that moment. So they frame my options around that. They know I’m going skiing pretty much regardless so they try to keep my body in #skiing shape for example #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @LorrieForseth @patientchat Excellent point, Lorrie! Hopefully it's received well by the provider. A lot of my responses today are based on negative experiences I've had, which can impact my approach at times. I'm getting better with those I have trouble with, & have cut some out from my team. #PatientChat |
| Lorrie @LorrieForseth @patientchat A4 : Our healthcare team provides resources such as @BCEpilepsy & @Epilepsy_Center , so we can ask about more information/services in the Epilepsy community right here in British Columbia, so we can gain more knowledge for my loved one & educate others. #patientchat |
| Simply Kristy @SimplyKristyD T4: I feel empowered to make decisions by my healthcare provider when they lay out all the facts and options clearly and then ask me my thoughts and any questions/considerations. #patientchat |
| Patient Chat @patientchat T5: How can you help to empower your healthcare team? #patientchat https://t.co/r7Qjr7Vulj |
| Lorrie @LorrieForseth @RareDiseaseDad @patientchat You really have to follow your gut instinct & pray they ( healthcare team ) listen , in the beginning when my loved one was diagnosed , it wasn't always easy. It was their way or not at all. Thankfully, times have changed. #patientchat |
| Patient Chat @patientchat RT @SimplyKristyD: T4: T4: I feel empowered to make decisions by my healthcare provider when they lay out all the facts and options clearly and then ask me my thoughts and any questions/considerations. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @TLHagan @patientchat Agreed. I think it generates from self-defense - when a dx isn't evident, a doctor thinks he's inept and so he/she becomes defensive. That's me being generous. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @SimplyKristyD That makes sense. It is empowering to have choices and knowledge to back up our choices. #patientchat |
| Alan Brewington @abrewi3010 T#5 we (patients) need to remember that they are people too. Mistakes/bad experiences will happen, no ones perfect. If we share the good/bad with them, that’s the basis of friendship. Everyone, almost everyone, loves to help a friend, especially one in pain. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @Madvocator @patientchat Yes...great point about the power differential, Nikki. I hear/feel this. For me, I was always thought the doctors have the answers. End of story. That in & of itself kind of took some of my feeling empowered away. Then being dismissed a few times was tough as well. #PatientChat |
| Patient Chat @patientchat T6: What kind of barriers have you faced in getting your healthcare team to support your empowerment? #patientchat https://t.co/9Z73ORfpKn |
| Adam Johnson - DadVocate @RareDiseaseDad @SimplyKristyD A fantastic (and maybe ideal?) dynamic! #PatientChat |
| Alan Brewington @abrewi3010 T#5 be open and honest about your current quality of life. #QOL is dynamic so if ur team fully understands & empathizes then their care will match that QOL dynamic I believe & hope. #patientchat |
| Lorrie @LorrieForseth @patientchat A5 : Keep the conversation open , educate each other . Remember your healthcare team are human . Knowledge is power . Epilepsy, SUDEP & seizure first aid. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 I have found this to be somewhat true of my spouses's relationships with his doctors. I have a different experience with mine. Genderizing? Women have a history of being dismissed. #patientchat |
 | John Novack @J2Novack RT @patientchat: T6: T6: What kind of barriers have you faced in getting your healthcare team to support your empowerment? #patientchat https://t.co/9Z73ORfpKn |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T6: T6: What kind of barriers have you faced in getting your healthcare team to support your empowerment? #patientchat https://t.co/9Z73ORfpKn |
| Lorrie @LorrieForseth @patientchat A6 : There are many myths surrounding Epilepsy, in the beginning when my loved one had a seizure, we were always told it was the flu . , changing neurologists was the first step in erasing that myth & moving forward. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A6: On occasion, a barrier I encounter is the healthcare team member saying that’s the way they’ve always done things, they’ve never seen something like this before, or they’re not interested in the research side. To an extent, I understand this. However…(cont.) #PatientChat |
| Patient Chat @patientchat T7: How much does your healthcare team’s actions impact your ability to be empowered? #patientchat https://t.co/7OU9hOmXXi |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat A6 Lack of soft skills - listening, compassion, empathy, nurturing. Unwillingness to say "I don't know" I think these skills break down barriers. Too often, empowerment seems to trigger an adversarial relationship, which means soft skills are all the more important. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat it’s much better to support the patient in finding someone else who does. Just because my condition doesn’t have a treatment/cure doesn’t mean I’m just going to accept that. Let’s get to work, fight, scratch, claw to move the needle forward for the betterment of all! #PatientChat |
| Lorrie @LorrieForseth @TLHagan @RareDiseaseDad @patientchat It's very hard , I can only speak as a caretaker, I can't speak as the loved one as I've never had a seizure . My voice is just as important as theirs that's why journaling is so important. #patientchat |
| Simply Kristy @SimplyKristyD T6: Ego and lack of understanding in my specific diagnosis are the two biggest that come to mind. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @TLHagan @abrewi3010 There you go! Thanks for sharing. It's kind of sad that a whole book could be written on this topic. 😢 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T7: T7: How much does your healthcare team’s actions impact your ability to be empowered? #patientchat https://t.co/7OU9hOmXXi |
| Patient Chat @patientchat RT @RareDiseaseDad: @patientchat it’s much better to support the patient in finding someone else who does. Just because my condition doesn’t have a treatment/cure doesn’t mean I’m just going to accept that. Let’s get to work, fight, scratch, claw to move the needle forward for the betterment of all! #PatientChat |
| Patient Chat @patientchat RT @llake: @patientchat A6 Lack of soft skills - listening, compassion, empathy, nurturing. Unwillingness to say "I don't know" I think these skills break down barriers. Too often, empowerment seems to trigger an adversarial relationship, which means soft skills are all the more important. #patientchat |
| Alan Brewington @abrewi3010 @llake I wish I had the answer for genderizing/sexism. As a chronic male with #chronicpain I’ve been dismissed plenty bc true men don’t talk about pain. My hope is to use that to speak smarter & more articulate even though the instinct is to yell. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T4 Intimidation, sarcasm, eye rolls, hand on the door - all impact my ability to trust. I'm not easily intimidated, but when dismissed by any of these actions it makes me feel disempowered, superfluous. #patientchat |
| Lorrie @LorrieForseth @patientchat A7 : When the healthcare team is interested & wants to discuss issues brought up in the appointment, it makes you feel like they really care , that alone gives you strength to keep going . They respect you enough to listen . That's empowering. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @llake @patientchat Same here, Lillian. Thanks for sharing, and I'm also sorry it's this way. So difficult. #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 |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 Yelling is definitely not a good choice. 😊 My husband has 3 doctors & all of them treat him with respect & concern. He has been w/me when I've been yelled at & dismissed out of turn & it angers him as he can see the difference. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @TLHagan @patientchat Yes! That's just how it is. Hand on door while saying "do you have any other questions"? 😟 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake 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 |
| Lillian Lake - Host of #SoulNestingChat @llake @RareDiseaseDad @patientchat I'm sorry it's this way, too. It's really a waste of energy on everyone's part. #patientchat |
| Alan Brewington @abrewi3010 CT as my first physical therapist said, I’ve earned the right to bad days, weeks, even months. However, I’ve also earned the right to a good life. Being sick changes our original definition of good life, it doesn’t change our right to it. #patientchat |
| Lorrie @LorrieForseth @patientchat C/T : I really look forward to these #patientchat's each month . Today I learned a lot more about healthcare team & how important they are not only to your health but to those around you . I'm reminded to keep the conversation going . Epilepsy matters. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T4 True story when I had my 3rd baby. Doctor & intern were ordering dinner takeout as I was delivering. THAT made me feel disempowered. I'm betting I'm not the only one that's had a similar experience. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @TLHagan Thanks, Teresa! I agree. And I've really appreciated your contributions. Take care! #PatientChat |
| Lorrie @LorrieForseth 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 |
| Simply Kristy @SimplyKristyD CT: Being prepared and speaking openly is key to empowering both yourself and your healthcare team. #patientchat |
| Patient Chat @patientchat This conversation has been good. Please feel free to continue it using, #patientchat. As we’re closing on the hour, I would like to thank Teresa, @TLHagan for joining us and putting this topic forward! |
| Patient Chat @patientchat @llake WOW is all I can say, WOW. Sorry you even experienced that especially during your delivery #patientchat |
| Lorrie @LorrieForseth @RareDiseaseDad @patientchat @FallonTonight 2 of my many favorite things Adam . You're the best too ! So glad you were able to join today , this #patientchat is always educational. |
| Patient Chat @patientchat RT @abrewi3010: CT as my first physical therapist said, I’ve earned the right to bad days, weeks, even months. However, I’ve also earned the right to a good life. Being sick changes our original definition of good life, it doesn’t change our right to it. #patientchat |
| Patient Chat @patientchat #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Lorrie @LorrieForseth @patientchat @TLHagan You guys are the best ! Thank you for hosting. See you next time #patientchat 💜 |
| Simply Kristy @SimplyKristyD Another great #patientchat. Have a great weekend everyone |
| Patient Chat @patientchat @TLHagan Thank you for joining us today, Teresa! #patientchat |
| Patient Chat @patientchat Save the date! Our next Empowered #patientchat will be Friday, Oct 1st @ 10 AM PT/ 1 PM ET! https://t.co/hgqMYjp7hL |
#patientchat content from Twitter.