#patientchat Transcript

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

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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
Happy Friday! I’m Nykema from @power4patients and I’m looking forward to today’s #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
Patient Chat @patientchat
[REDACTED USER] Appreciate you dropping in! #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
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
Alan Brewington @abrewi3010
A1 Pretty easy. Despite these white coats they are just humans like you and I. #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
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
Adam Johnson - DadVocate @RareDiseaseDad
[REDACTED USER] 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
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: [REDACTED USER] While it's not good that it takes this kind of effort & convincing for them to get onboard, it's nice th…
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
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
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
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 ac…
Patient Chat @patientchat
[REDACTED USER] 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
[REDACTED USER] @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
Patient Chat @patientchat
T5: How can you help to empower your healthcare team? #patientchat https://t.co/r7Qjr7Vulj
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
[REDACTED USER] 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
[REDACTED USER] 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
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: What kind of barriers have you faced in getting your healthcare team to support your empowerment? #patientchat https:/…
Lillian Lake - Host of #SoulNestingChat @llake
RT @patientchat: T6: What kind of barriers have you faced in getting your healthcare team to support your empowerment? #patientchat https:/…
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
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: 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’…
Patient Chat @patientchat
RT @llake: @patientchat A6 Lack of soft skills - listening, compassion, empathy, nurturing. Unwillingness to say "I don't know" I think the…
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
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/ C…
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
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
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
Patient Chat @patientchat
#patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
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.