#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Jamie Roger @JamieRoger8 Hello #patientchat . Hope everyone is having a good week. Jamie from CT. Time for chatting @Chris_Anselmo @abrewi3010 |
 | 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. |
 | Your GPS Doc, LLC @yourgpsdoc RT @patientchat: Join us in a few minutes for an Empowered #patientchat. Info/Topics: https://t.co/Jw44e7F0yK https://t.co/55htFiVVQl |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| @ Hey all, Kim here from a below zero, winter wonderland in Wisconsin. #Raredisease and #chronicillness advocate. #healthcarejourney blogger; RN turned into full time patient #patientchat | |
| @ @JamieRoger8 @Chris_Anselmo @abrewi3010 Hi Jamie! #patientchat | |
| Patient Chat @patientchat Hi #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat |
 | Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @gratefull080504 Checking in from Chicago Don't know how long I can participate today #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 @Chris_Anselmo @abrewi3010 How are you doing? #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Your GPS Doc, LLC @yourgpsdoc Hi everyone. I'm Nicole Rochester, former caregiver to my late father, physician, health advocate, and CEO of @yourgpsdoc. Great topic today! #patientchat |
| Jamie Roger @JamieRoger8 @gratefull080504 we are glad you joined while you could. #patientchat |
| @ @JamieRoger8 @Chris_Anselmo @abrewi3010 I'm doing okay, trying to stay warm and healthy LOL #patientchat | |
 | Alan Brewington @abrewi3010 @JamieRoger8 @Chris_Anselmo I’m here but I’m trying to work too. Multitasking. Hope everyone is well! #patientchat |
| @ @yourgpsdoc Glad to see you here! #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 & history. #patientchat |
 | Radha @radhachitale Hi all Radha from @teaminspire here 👋🏽 #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 @Chris_Anselmo @abrewi3010 It's rough when the weather is like this. Best of luck. i'm just getting over a gnarly episode of yuck haha. #patientchat |
| @ @abrewi3010 @JamieRoger8 @Chris_Anselmo Hey there! #patientchat | |
| @ @JamieRoger8 @Chris_Anselmo @abrewi3010 I'm on 7 weeks of respiratory junk #patientchat | |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey YO. Checking in from a doctor's office in Richmond VA. Just a quick visit, no disease state. This one's preventive maintenance! #patientchat |
| @K_SalemOaks Kevin from CT here. The sun is shining and it's Friday. Want another opinion: I like pizza. #patientchat | |
 | Leslie Kathryn RN BSN @dys_les @patientchat I am Leslie a nurse turned patient. This is my first chat, and I love the topic. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/Vgxd45poj0 #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 @Chris_Anselmo @abrewi3010 ughhh that's awful, im only on my 3rdish haha #patientchat |
| @ @K_SalemOaks I also enjoy pizza, is that the opinion you were looking for? Second opinion it is :) #patientchat | |
| @K_SalemOaks @dys_les @patientchat Welcome to your first chat Leslie. #patientchat | |
| Patient Chat @patientchat Today's #patientchat topic is Finding Your Voice - What Stops People from Getting a Second Opinion? https://t.co/Jw44e7F0yK |
| @ @dys_les @patientchat Hey stranger! So glad you're here! #patientchat | |
| Patient Chat @patientchat I will introduce new Topics with T1, T2...Please include corresponding T# at front of every answer - hard to remember but helpful! #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: Today's #patientchat topic is Finding Your Voice - What Stops People from Getting a Second Opinion? https://t.co/Jw44e7F0yK |
 | Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat topic is Finding Your Voice - What Stops People from Getting a Second Opinion? https://t.co/Jw44e7F0yK |
| Jamie Roger @JamieRoger8 @MightyCasey good to hear. glad you're here, i've missed your disruption. #patientchat |
 | Beth Morton @beth_morton Hello everyone! Beth, joining from southern Vermont. I'm a #chronicmigraine patient and this topic is *very* timely! Looking forward it. #patientchat |
| @Srotberg15 Hey everyone! Seth from DC is here. A rare disease advocate for Huntington’s Disease and young adults impacted by a rare or chronic condition. #patientchat | |
| @ @beth_morton Hi Beth! Hope things are going smoother #patientchat | |
 | Heather McCullen @H_SalemOaks hi #patientchat Heather joining from outside of Ann Arbor MI |
 | Laurie Reed @LReedptadvocate Laurie here, Patient Advocate, looking forward to the discussion. #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat T1: What are your thoughts on getting a second opinion? Who should seek one? #patientchat https://t.co/zL7FbbpRPF |
| Patient Empowerment Network @power4patients RT @patientchat: T1: What are your thoughts on getting a second opinion? Who should seek one? #patientchat https://t.co/zL7FbbpRPF |
| Jamie Roger @JamieRoger8 @beth_morton How are you holding up with the weather? Thought of you when i got a migraine the other day and couldnt pick up my head. #patientchat |
| Beth Morton @beth_morton @fireflyrn84 Hi Kimberly! A little, still trying to work myself out of a flare. Exploring second opinions, actually, so this is perfect! Hope you're doing okay. #patientchat |
| @ T1: Second opinions are a right and often a necessity in medicine, especially with #rarediseases. Anyone can ask for one, if you feel like there is something missing or aren't getting adequate care or any reason, don't be afraid. #patientchat | |
| Alan Brewington @abrewi3010 A1 I’m very hesitant about using a 2nd opinion, I’m afraid of “Doctor shopping”. Hard balance to navigate. #patientchat |
| Jamie Roger @JamieRoger8 My thoughts are that this is important if there is any doubt in the first opinion or the services received/ treatment plan. Do what feels best for you. #patientchat |
| @ @beth_morton One day at a time right now, and sometimes one hour at a time. Nausea has been wicked with my respiratory bug. #patientchat | |
| Patient Empowerment Network @power4patients T1: Here's the advice we offer: seek a 2nd opinion when HCP recommends surgery/invasive procedure; with a cancer or rare disease diagnosis; or you have gut feeling something is off #trustyourgut #patientchat |
| @ Exactly, do what feels best! Go with your gut!! #patientchat | |
| Patient Empowerment Network @power4patients RT @fireflyrn84: T1: Second opinions are a right and often a necessity in medicine, especially with #rarediseases. Anyone can ask for one,… |
| Heather McCullen @H_SalemOaks T1: Realistically, getting to a doctor for the first opinion feels like such a big step for me that I'm pretty likely to just go with it. #patientchat |
| Laurie Reed @LReedptadvocate @abrewi3010 T1 -- Why put a spin on it of 'doctor shopping'? where is that coming from? #patientchat |
| @ [REDACTED USER] [REDACTED USER] Great to see you! #patientchat | |
| Your GPS Doc, LLC @yourgpsdoc T1: Second opinions are wonderful and are absolutely necessary for high stakes situations, which I define as serious/life-threatening diagnoses, life-altering therapies, or significant surgeries. They are not obtained enough in my opinion. #patientchat |
| Beth Morton @beth_morton A1. If you have doubts or concerns about your diagnosis/treatments, or are dissatisfied with your current treatments, or if your current provider has “run out of ideas,” I would encourage people to seek a second opinion. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @power4patients: T1: Here's the advice we offer: seek a 2nd opinion when HCP recommends surgery/invasive procedure; with a cancer or rar… |
| Patient Empowerment Network @power4patients RT @yourgpsdoc: T1: Second opinions are wonderful and are absolutely necessary for high stakes situations, which I define as serious/life-t… |
| @Srotberg15 T1: I think it depends on what you are getting a second opinion for. If it’s for an official diagnosis then I think you should consider getting one just to make sure you are not mis-diagnosed. This applies more to the rare disease community imo #patientchat | |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 A1) I have asked for 2nd opinions twice: 1) Diagnosis of #KidneyDisease 2) Treatment plan for #prostatecancer If your instincts tell you something, trust your instincts. We have these feelings for a reason, + we need to trust + act on them #patientchat |
| Patient Empowerment Network @power4patients RT @beth_morton: A1. If you have doubts or concerns about your diagnosis/treatments, or are dissatisfied with your current treatments, or i… |
| Your GPS Doc, LLC @yourgpsdoc @H_SalemOaks I totally understand this. I wish the healthcare system made this easier because the first opinion may not always be the best. #patientchat |
| @ @yourgpsdoc I definitely agree that they aren't done enough. #patientchat | |
| Alan Brewington @abrewi3010 @LReedsbooks There will always be a doc/provider willing to tell me what I want to hear. What I want to hear vs need most likely 2 different things. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @fireflyrn84 Great to see you too! #patientchat |
 | Melissa VanHouten @melissarvh T1 Sometimes necessary, especially if my questions & concerns were not adequately addressed, if several possibilities for diagnosis/treatment exist, or if much interpretation/judgment is involved. #PatientChat |
| Jamie Roger @JamieRoger8 @fireflyrn84 Being referred for a second opinion was the best thing that could have happened to me. My doctor knew he was out of his league with my surgery and that I needed a specialist. A forced second opinion is just as important. #patientchat I also couldn't stand the 1st doctor. |
| Patient Empowerment Network @power4patients T1.2 It's critically important to speak to an expert in your disease, confirm the right dx or treatment option, explore all treatment options, and for confidence/peace of mind #patientchat |
| Patient Empowerment Network @power4patients RT @yourgpsdoc: @H_SalemOaks I totally understand this. I wish the healthcare system made this easier because the first opinion may not alw… |
| @K_SalemOaks @Srotberg15 I think it applies to the chronic illnesses as well. For some, being un-diagnosed for a long-time can also be a reason to get a 2nd to ensure you are not "settling". #patientchat #S4PM #pinksocks #patexpsymp | |
 | Heather 🇺🇸 @ZHeatherChamp @patientchat Hi! I’m heather - person living with Cowden Syndrome & Lhermitte-duclos Disease. Newbie #PatientAdvocate too! #patientChat #pten |
| Patient Empowerment Network @power4patients RT @gratefull080504: A1) I have asked for 2nd opinions twice: 1) Diagnosis of #KidneyDisease 2) Treatment plan for #prostatecancer If yo… |
| @ @JamieRoger8 I've done the same thing with forced second opinions. Sometimes there are providers that just aren't a good fit. #patientchat | |
| Patient Chat @patientchat T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB |
| Patient Empowerment Network @power4patients @Rose_of_Sharon8 @patientchat Totally agree! #patientchat |
| Laurie Reed @LReedptadvocate RT @JamieRoger8: @fireflyrn84 Being referred for a second opinion was the best thing that could have happened to me. My doctor knew he was… |
| @K_SalemOaks T2 Yes, twenty years ago. It wasn't my idea. My insurer forced be to go to an in-network doc after an expert called it Stage 4 cancer. Second doc had a better idea. Read about it here https://t.co/EriSlmj06P #patientchat #S4PM #pinksocks #patexpsymp | |
| Alan Brewington @abrewi3010 @LReedsbooks I will say “doctor shopping” can only be defined by each patient. They have to decide if it’s shopping or 2nd opinion, no one else has a right to make that determination #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB |
| @Srotberg15 @K_SalemOaks Totally agree and if I had enough space in my last tweet I would have put that. Thanks for adding that in! #patientchat | |
| Laurie Reed @LReedptadvocate RT @gratefull080504: A1) I have asked for 2nd opinions twice: 1) Diagnosis of #KidneyDisease 2) Treatment plan for #prostatecancer If yo… |
| @K_SalemOaks @Srotberg15 Teamwork! #patientchat | |
| Beth Morton @beth_morton A2. Not yet, unfortunately. I’m exploring options. I feel like there are a few unexplored avenues that my current specialist isn’t exploring or integrating into my care, but that should be. #patientchat |
| Jamie Roger @JamieRoger8 @patientchat Yes, and it changed my whole treatment/ surgery. And definitely the outcome. #patientchat https://t.co/Hr9xlXbhvI |
| Laurie Reed @LReedptadvocate RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB |
| @ T2: Absolutely, I actually saw 6 endocrinologists when we were working on getting initial #dysautonomia diagnosis (we didn't know at the time). The last one that we saw flat out said that it wasn't endocrine and we needed to see neurology. Kudos to him for saying it. #patientchat | |
| Your GPS Doc, LLC @yourgpsdoc T2: I haven't personally received a second opinion that changed my treatment but I know others who have. It's always good to have choices. Many smart doctors practice based on how they were trained and may not be familiar (or comfortable) with alternative treatments. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 A2: I trusted my instincts when my primary care wanted to refer me to community nephrologist I sought out my nephrologist + had a preemptive #kidneytransplant avoiding dialysis Less than 3% of all #kidneytransplants are preemptive Changed my life!! #patientchat |
| Patient Empowerment Network @power4patients T2: My mother-in-law was diagnosed with a rare #lymphoma and sadly didn't receive a 2nd opinion from an expert re: her treatment plan until it was too late. #patientchat |
| Alan Brewington @abrewi3010 A2 my hip replacement surgeon sent my to a different surgeon for a less evasive procedure. I said no, want replacement bc it was a better solution for me #patientchat |
| Patient Empowerment Network @power4patients RT @yourgpsdoc: T2: I haven't personally received a second opinion that changed my treatment but I know others who have. It's always good t… |
| Patient Empowerment Network @power4patients RT @fireflyrn84: T2: Absolutely, I actually saw 6 endocrinologists when we were working on getting initial #dysautonomia diagnosis (we didn… |
| @K_SalemOaks It seems it would have to be. The question becomes, how might we increase that confidence? Just-in-time doesn't seem like the way to go here. We need to help up #Healthliteracy in general. #patientchat #S4PM #pinksocks #patexpsymp | |
| @ [REDACTED USER] I think that has a lot to do with it, but also a lot is our health insurance and how well we understand our coverage too, which also goes along with the literacy. #patientchat | |
| Your GPS Doc, LLC @yourgpsdoc @power4patients Oh my, I'm so sorry. #patientchat |
| Melissa VanHouten @melissarvh T2 I have not received a 2nd opinion which altered my treatment choice but I have received 2nd opinions which led to new (and necessary) testing. And I have never regretted getting a 2nd opinion. #PatientChat |
| Laurie Reed @LReedptadvocate @power4patients I'm so sorry. #patientchat |
| Patient Empowerment Network @power4patients That's our theory and so we've made it our mission @power4patients #patientchat |
| Heather McCullen @H_SalemOaks RT @JamieRoger8: @patientchat Yes, and it changed my whole treatment/ surgery. And definitely the outcome. #patientchat https://t.co/Hr9… |
 | Salem Oaks @SalemOaks RT @JamieRoger8: @patientchat Yes, and it changed my whole treatment/ surgery. And definitely the outcome. #patientchat https://t.co/Hr9… |
| @PSCPartners RT @patientchat: T1: What are your thoughts on getting a second opinion? Who should seek one? #patientchat https://t.co/zL7FbbpRPF | |
| Your GPS Doc, LLC @yourgpsdoc RT @JamieRoger8: @patientchat Yes, and it changed my whole treatment/ surgery. And definitely the outcome. #patientchat https://t.co/Hr9… |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat A2: People will seek three proposals on car damage repair + will not accept a 2nd opinion on a treatment even when there instincts tell them so do so? |
 | Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB |
| @ @melissarvh Me neither. Another set of eyes is never a bad thing. #patientchat | |
| Patient Chat @patientchat Topic 3 (T3:) coming up... https://t.co/9kVuhLEGlB #patientchat |
| Laurie Reed @LReedptadvocate Great question! #patientchat |
| Patient Chat @patientchat T3: What do you think stops some patients from getting a second opinion following a serious diagnosis? #patientchat https://t.co/m2coXevumJ |
| Laurie Reed @LReedptadvocate RT @patientchat: T3: What do you think stops some patients from getting a second opinion following a serious diagnosis? #patientchat https:… |
| Patient Empowerment Network @power4patients @gratefull080504 Yes, Yes and YES! #patientchat |
| @ T3: Fear initially. After a serious diagnosis, the first thing that patients and families are trying to do is absorb the news and figure out how to even take the next breath. It's hard enough to do that, let alone figure out the next step. #patientchat | |
| @K_SalemOaks Your multiple second opinions brings up another question. What if the opinions don't match? Do you go for a third? When do we just bring all the docs together to hash it out? #patientchat #S4PM #pinksocks #patexpsymp | |
| Beth Morton @beth_morton A3. Lots of things stop people from getting a 2nd opinion. Insurance & geographic barriers. Shortages of certain types of specialists. As silly as it sounds, sometimes even a sense their current provider will either feel betrayed or outright dump them as a patient. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 A) Placing implicit in the US Healthcare System that is not designed for them Once you understand US healthcare is not #patientcentered, you realize why 2nd opinions are necessary #patientchat |
| Alan Brewington @abrewi3010 A3 money & shock. It costs a lot of money and time to get a second opinion. Also, going to work on treatment is comforting, don’t want more tests which equals more depression #patientchat |
| Jamie Roger @JamieRoger8 What initially stopped me was that I didn't want to have to explain everything I had just been through to another doctor. Everyone around me insisted I needed to, I just wasnt ready to relive everything. I cried through my whole intake when I finally did. #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu A2. A 2nd opinion informed me I'd never need to have a painful procedure ever again. #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @patientchat: T3: What do you think stops some patients from getting a second opinion following a serious diagnosis? #patientchat https:… |
| Laurie Reed @LReedptadvocate @patientchat I actually worked with a patient that was afraid of offending the first doctor and would not get a second opinion. In fact, any physician worth their weight would not be offended. #patientchat |
| Jamie Roger @JamieRoger8 RT @fireflyrn84: T3: Fear initially. After a serious diagnosis, the first thing that patients and families are trying to do is absorb the n… |
| @K_SalemOaks T3: The burden of it. It may have taken months or years to get the first…and I need to do that again? #patientchat #S4PM #pinksocks #patexpsymp | |
| Patient Chat @patientchat RT @LReedsbooks: @patientchat I actually worked with a patient that was afraid of offending the first doctor and would not get a second opi… |
| @ @K_SalemOaks I think bringing a team of doctors together in a room is a great idea. Brainstorming and saving appointments probably will lead to better care #patientchat | |
| Laurie Reed @LReedptadvocate @patientchat I've also heard stories of physicians that have threatned patients that said they were interested in getting a second opinion. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T3: I think many patients avoid second opinions due to fear of offending the 1st doc, fear of disease progression/lack of time, and (as was mentioned) poor health literacy. Cost/insurance coverage is also a huge issue. #patientchat |
 | IFFGD @IFFGD RT @fireflyrn84: T1: Second opinions are a right and often a necessity in medicine, especially with #rarediseases. Anyone can ask for one,… |
| Heather McCullen @H_SalemOaks @LReedsbooks @patientchat I won't get a "second opinion" on a bad haircut because I might offend someone. Makes complete sense to me. #patientchat |
| Alan Brewington @abrewi3010 RT @JamieRoger8: What initially stopped me was that I didn't want to have to explain everything I had just been through to another doctor.… |
| Patient Empowerment Network @power4patients T4: This is what I learned from my MIL's experience about what stopped her from seeking a 2nd opinion: #1 concern about offending her doctor and #2 a feeling of urgency about starting treatment, especially with a serious diagnosis like #cancer #patientchat |
| @ @JamieRoger8 It's a hard step to take and a scary one at that. #patientchat | |
| Laurie Reed @LReedptadvocate RT @fireflyrn84: T3: Fear initially. After a serious diagnosis, the first thing that patients and families are trying to do is absorb the n… |
| Your GPS Doc, LLC @yourgpsdoc @LReedsbooks @patientchat This is horrible! #patientchat |
| Beth Morton @beth_morton Note, admittedly, these are all things I'm currently dealing with. #patientchat |
| @K_SalemOaks I am inquisitive today. So how would they code the brainstorming session to make sure it is covered? #patientchat #S4PM #pinksocks #patexpsymp | |
| Melissa VanHouten @melissarvh T3 Fear- Fear of getting worse or conflicting news, fear that their original doc will be angry or dismiss them entirely, or fear this will delay treatment; Cost of addtn'l visits & tests; Not sure how 2 seek 2nd opinion or no other specialists w/i reasonable distance #PatientChat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu A3. Having multiple chronic illnesses, one being depression... It's partly not feeling ready to take the idea of more bad news. Sometimes I think I'll break apart if they find one more thing wrong with me. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @K_SalemOaks I love this idea! #patientchat |
| @ 110% agreed #patientchat | |
| Patient Empowerment Network @power4patients @LReedsbooks @patientchat That's really unbelievable, but sadly I believe it #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @gratefull080504: #patientchat A2: People will seek three proposals on car damage repair + will not accept a 2nd opinion on a treatmen… |
| Patient Empowerment Network @power4patients #patientchat |
| Alan Brewington @abrewi3010 A3 testing/diagnosis is a trauma unto itself. It’s hard mentally and physically, why go thru it twice if we don’t have too. #patientchat |
| Patient Chat @patientchat RT @melissarvh: T3 Fear- Fear of getting worse or conflicting news, fear that their original doc will be angry or dismiss them entirely, or… |
| Your GPS Doc, LLC @yourgpsdoc @JamieRoger8 This is a very important perspective. I had not considered the trauma of repeating everything. Thanks so much for sharing that. #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @gratefull080504: A2: I trusted my instincts when my primary care wanted to refer me to community nephrologist I sought out my nephrolog… |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @yourgpsdoc: T2: I haven't personally received a second opinion that changed my treatment but I know others who have. It's always good t… |
| @ @K_SalemOaks It's considered case management. Not sure what the code is, but I know the team meetings happen at a lot of facilities as a standard of care. #patientchat | |
| Patient Chat @patientchat Topic 4 (T4:) coming up... https://t.co/9kVuhLEGlB #patientchat |
| @Srotberg15 Yes to all of this! #patientchat | |
| Patient Empowerment Network @power4patients T4.2: I think it's also related to lack of access or the inability to travel to specialty/expert doc and concern that the cost will not be covered by insurance #patientchat |
| Patient Chat @patientchat T4: How can patients be better supported in seeking a second opinion? What’s the role of the care partner? The role of HCPs? #patientchat https://t.co/gJ0rymDEz7 |
| Heather McCullen @H_SalemOaks T3: The process for getting a second opinion isn't very clear, especially when insurance is involved. If you're facing a diagnosis that would warrant a second option you're probably overwhelmed enough with that #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @power4patients: T4: This is what I learned from my MIL's experience about what stopped her from seeking a 2nd opinion: #1 concern about… |
| Your GPS Doc, LLC @yourgpsdoc @LReedsbooks @patientchat Amen! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: How can patients be better supported in seeking a second opinion? What’s the role of the care partner? The role of HCP… |
| Beth Morton @beth_morton A4. My barriers are challenging. For one, I need more specialists in #headache & #migraine. I also need #telemedicine to be more widely accepted by insurance & providers. Oftentimes, a second opinion for me requires no physical evaluation. #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat Have to run |
| @ T4: Patients need someone who can give them options and let them know what is available. My doctor has recommended second opinions before. Care partners are part of bridging the gap between #HCP and #patient #patientchat | |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: If you get a diagnosis for something serious (#cancer, #ms, #ParkinsonsDisease et al) it's critical due diligence to get input from more than one clinician. |
| @ @beth_morton Telemedicine is huge! We need it so badly in rural areas. It is becoming more available, but still isn't where we need it to be at. #patientchat | |
| Alan Brewington @abrewi3010 A4 we hear to many negative stories/accounts sometimes I fear. Our #healthcare system is broke but that doesn’t mean your individual doc/system is. Being more optimistic helps us all I think/hope #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu A3. Also, history of poor treatment by doctors makes one want to minimize contact as much as possible. #patientchat |
 | Steve, dad of The Best DogS Ever @ScottsdaleVeins RT @beth_morton: A1. If you have doubts or concerns about your diagnosis/treatments, or are dissatisfied with your current treatments, or i… |
| Jamie Roger @JamieRoger8 @yourgpsdoc OMG it was AWFUL. #patientchat https://t.co/Hr9xlXbhvI |
| Your GPS Doc, LLC @yourgpsdoc T4: As a care partner for my dad I recommended a 2nd opinion on more than one occasion, but he was so loyal to his doctors and didn't want to see anyone else. That was difficult, especially as I'm a physician myself and felt he would have benefitted. 1/2 #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @abrewi3010: A3 testing/diagnosis is a trauma unto itself. It’s hard mentally and physically, why go thru it twice if we don’t have too.… |
 | Suzie Siegel @SuzieSiegel .@SarcomaAlliance @CureSarcoma & other nonprofits list comprehensive #sarcoma centers so that patients know where to go for a second opinion. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2: I did see two MDs (surgeons) about my #breastcancer dx as first part of tx journey. The MD my #rads guy referred me to was a total douche. MD an MD buddy recommended to me was super participatory. Easy decision then, glad I asked ?s. #s4pm #patientchat |
| Melissa VanHouten @melissarvh T4 HCPs can encourage 2nd opinions or at least mention this as an option. They can give direction as to how & where to request, educate re purpose of requesting, & can willingly & openly discuss 2nd opinions when rec'd. #PatientChat |
| Laurie Reed @LReedptadvocate Well said. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T4: HCPs need to welcome second opinions, especially when they know they are in over their heads OR that there are alternative therapies with which they are not familiar. 2/2 #patientchat |
| Jamie Roger @JamieRoger8 @patientchat I think first and foremost, doctors should be concerned with the best interest of the patient and be self-aware of their own skills and experience. It's not an insult, it's our lives at stake, and our QOL. #patientchat |
| Beth Morton @beth_morton There are now 569 certified #headache/#migraine specialists in the US. And only a handful of multidisciplinary clinics. It's just hard/overwhelming to gain access to these specialists for a second opinion living miles away with out-of-state insurance. #patientchat |
| @K_SalemOaks This is really tough. The value of getting more information can actually become discouraging. Thanks for sharing - you've got me thinking but I don't have th right words yet. I hope you find some better answers. #patientchat | |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T3: what I call the LOUD NOISE IN MY HEAD effect. IOW, you hear your name and [insert serious condition here] in same sentence, absorbing that often takes time. 2nd opinions should be part of ongoing journey, not just at dx. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @melissarvh: T4 HCPs can encourage 2nd opinions or at least mention this as an option. They can give direction as to how & where to requ… |
| Melissa VanHouten @melissarvh T4 This is a HUGE problem! #PatientChat |
| Patient Empowerment Network @power4patients RT @yourgpsdoc: T4: HCPs need to welcome second opinions, especially when they know they are in over their heads OR that there are alternat… |
 | Carolyn Holmes @HolmesCarolyn23 RT @yourgpsdoc: T4: HCPs need to welcome second opinions, especially when they know they are in over their heads OR that there are alternat… |
| Patient Chat @patientchat Topic 5 (T5:) coming up... https://t.co/9kVuhLEGlB #patientchat |
| Patient Empowerment Network @power4patients RT @melissarvh: T4 HCPs can encourage 2nd opinions or at least mention this as an option. They can give direction as to how & where to requ… |
| @ Gotta run, time for nausea meds. Great chat everyone! #patientchat | |
| Patient Chat @patientchat T5: How can we encourage patients to see the value in seeking a second opinion? #patientchat https://t.co/5zwI73I9Vk |
| Steve, dad of The Best DogS Ever @ScottsdaleVeins #patientchat Always seek a 2nd opinion. It won't hurt your physician's feelings. Great practices actually fwd. patient info to the 2nd opinion provider. & don't forget to take notes. Ask your Q's. Get clarification(s). @patientchat |
| Your GPS Doc, LLC @yourgpsdoc @malkabethwendy Gosh, this doesn't even seem legal. #patientchat |
 | Ody @OdyO11 A1: Patients whose symptoms are serious but who didn't get a diagnosis yet (or were brushed off as "it's in your head"). Then again, being brushed off can feel traumatizing and patients might be accused of doctor shopping, so they are between a rock and a hard place. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T4: Having a clinician on your side, be it NP or MD or PA, to help you sort through your decision tree(s) is key. Too many peeps don't have benefit of that. DIY is hard for most folx, at least at outset. #s4pm #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: How can we encourage patients to see the value in seeking a second opinion? #patientchat https://t.co/5zwI73I9Vk |
| Patient Chat @patientchat @fireflyrn84 Thanks for stopping by Kim! Have a great weekend #patientchat |
| Alan Brewington @abrewi3010 A4 I think our system still has a ways to go before it finally accepts #caregivers under the mantra of #everyoneincluded. Without this caregivers are not always receiving best info for that moment #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4 - It seems if we normalize it rather than considering it an exception. If patients hear stories of other patients getting second opinions. If physicians work collegially (?) and bring other physicians in, or make recommendations for second opinions. #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 Feel better! #patientchat |
| Suzie Siegel @SuzieSiegel I'm on Medicare with a huge monthly Medigap premium because HMOs & PPOs can be very bad about letting people with rare cancers see specialists for second opinions. #sarcoma #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu A4. Make 2nd opinions cost less, be less intimidating, easier to schedule, have a system of emotional support regardless of outcome. Encourage outside advocates, standardize it, instruct doctors to request it. #patientchat |
| Beth Morton @beth_morton @malkabethwendy In my current headache clinic, I'm not allowed to consult with the other specialist in the practice and it's not clear that the two specialists really consult on my case/share expertise. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @JamieRoger8 HAH. Speaking of disruptors, hear amazing story of badass advocacy ninja @amy_roost on this week's @hilarious_is https://t.co/J0MAhuLBUs #patientchat |
| Jamie Roger @JamieRoger8 @patientchat IMO this goes back to self-awareness and confidence that patients deserve to seek out a second opinion if something doesn't feel right about the first, or if Tx plan seems undoable. #patientchat |
| Laurie Reed @LReedptadvocate RT @melissarvh: T4 HCPs can encourage 2nd opinions or at least mention this as an option. They can give direction as to how & where to requ… |
 | charlotte newman @sunshine4y RT @melissarvh: T2 I have not received a 2nd opinion which altered my treatment choice but I have received 2nd opinions which led to new (a… |
| Heather McCullen @H_SalemOaks T5: In line with my other answers, demystifying the process. A step by step guide or a list of common obstacles and ways around them. Especially for patients who are not happy with their current doctor and won't be able to get help from them #patientchat |
| Jamie Roger @JamieRoger8 @MightyCasey @amy_roost @hilarious_is I'll check it out after the chat. #patientchat |
| Heather McCullen @H_SalemOaks RT @beth_morton: @malkabethwendy In my current headache clinic, I'm not allowed to consult with the other specialist in the practice and it… |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu RT @K_SalemOaks: This is really tough. The value of getting more information can actually become discouraging. Thanks for sharing - you'v… |
| Beth Morton @beth_morton A5. I think by remembering that doctors each have different training and philosophies. Just because you’ve seen one, doesn’t mean you’ve been exposed to all the possible ideas re: diagnoses or treatments. A fresh look at your case can be good. #patientchat |
| Patient Empowerment Network @power4patients T5: This stat sealed the deal for us: a study done by Mayo Clinic showed that 88% of patients who get a second opinion go home w/ a new or refined diagnosis. Meaning only 12% of patients receive confirmation that their 1st diagnosis was complete and correct #micdrop #patientchat |
| Patient Empowerment Network @power4patients RT @H_SalemOaks: T5: In line with my other answers, demystifying the process. A step by step guide or a list of common obstacles and ways a… |
| Alan Brewington @abrewi3010 A5 we need to become better storytelling machines, need to include good and the bad. This will build more trust into the system. #patientchat |
| @K_SalemOaks T5: Stories! Successes when someone sought a 2nd. Consequences when they didn't. #patientchat #S4PM #pinksocks #patexpsymp | |
 | Bob Tufts @TuftsB T4 when I told my oncologist I was reluctant to get an ASCT, it was my 1st pushback. He encouraged me to get 2nd opinion from one who prefers to stack meds, knowing that a 4 week course of care is a big commitment for me & my caregiver. He put himself in my shoes #patientchat |
| Beth Morton @beth_morton RT @power4patients: T5: This stat sealed the deal for us: a study done by Mayo Clinic showed that 88% of patients who get a second opinion… |
| Ody @OdyO11 A1: Patients who have serious symptoms and no explaining diagnosis should seek a second opinion. Rare diseases often aren't diagnosed for years. Thing is, patients should best see a specialist for a chance of diagnosis. #patientchat |
| Ody @OdyO11 A1: Thing is, patients need to be tactical about which doctors to see. If they see too many doctors, they might get blamed of doctor shopping. They have the best chance of receiving a diagnosis if they have an idea where to turn (e.g. what might be the diagnosis). #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T5: This probably deserves a public service campaign. I'm sick of seeing commercials for prescription drugs and Medicare plans. We need more of this information widely available. Also, we need HCPs to mention it to patients. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: T5: This stat sealed the deal for us: a study done by Mayo Clinic showed that 88% of patients who get a second opinion… |
 | Gigi Peterkin (she/her) 🎙♣️🏠🍷 @Gigi_Peterkin checking in with #patientchat to see what's up after seeing @MightyCasey's tweets. |
| Jamie Roger @JamieRoger8 RT @power4patients: T5: This stat sealed the deal for us: a study done by Mayo Clinic showed that 88% of patients who get a second opinion… |
| @ @patientchat A5 Take patients seriously in the first place! I have a severe sleep disorder, and I’ve been told by docs “everyone gets tired” or I should just keep a strict sleep schedule. If docs don’t acknowledge debilitating symptoms of course they’ll be hostile w/2nd opinions! #patientchat | |
| Patient Empowerment Network @power4patients @H_SalemOaks One of the new programs we're rolling out this year is the Pro-Active Patient Toolkit that includes everything from inspiration & motivation to call scripts, email templates and list of Qs to get the ball rolling #patientchat |
| Laurie Reed @LReedptadvocate @beth_morton @H_SalemOaks @malkabethwendy This is not right. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @power4patients: T5: This stat sealed the deal for us: a study done by Mayo Clinic showed that 88% of patients who get a second opinion… |
| Ody @OdyO11 A2: Yes. It took a long time between onset of symptoms and diagnosis. I had to see several doctors, and I had many negative experiences. When I finally got diagnosed, I finally received therapies and treatment. #patientchat |
| Patient Chat @patientchat Topic 6 (T6:) coming up... https://t.co/9kVuhLEGlB #patientchat |
| Patient Chat @patientchat T6: What are your tips and/or advice for a patient who is nervous or hesitant to get a second opinion? #patientchat https://t.co/JRtGgiqiS8 |
| Patient Empowerment Network @power4patients @Gigi_Peterkin @MightyCasey Hey Gigi! It's been a long time! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: I learned to ask questions, get more than one source, from my #epatient 'rents (mom = brain tumor, dad = Parkinson's). My mom fired my nana's MD for overmedicating nana in '72. I see my power in participation, and FACT CHECKING. (I'm a #journo too) #patientchat |
| Your GPS Doc, LLC @yourgpsdoc This sounds phenomenal! #patientchat |
| Laurie Reed @LReedptadvocate Wow! This is a stunning statistic! #patientchat #patientadvocacy #patientexperience #healthcare |
| Heather McCullen @H_SalemOaks Love it! Especially the call scripts and templates. Can't wait to see it #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @Gigi_Peterkin #patientchat https://t.co/Yn9TGdfiuD |
| Steve, dad of The Best DogS Ever @ScottsdaleVeins #patientchat Be proactive in seeking healthcare: Jot down your Q's beforehand. If poss, ask a friend or family member to join in consult, & take notes. Afterward, review, jot down add'l Q's. Always get a 2nd opinion. #YourHealthIsYourWealth @patientchat |
| Jamie Roger @JamieRoger8 @Chris_Anselmo @abrewi3010 It's every other week... so the next chat is 2/1 . Just trying to keep you in the loop! Hope you're staying warm! #patientchat |
| Beth Morton @beth_morton A6. Consider the biggest gaps in your current needs (finding a current diagnosis, better treatment, etc), seek out recs for docs/clinics that fill that need (personal recs, check prof memberships), don’t rule out traveling. And take my own advice.... #patientchat |
| Gigi Peterkin (she/her) 🎙♣️🏠🍷 @Gigi_Peterkin @power4patients @MightyCasey I know it's been too long - coming back to my health care roots and always looking to help patients - we are ALL patients! #patientchat |
| Alan Brewington @abrewi3010 A5 remember that second opinions are legit tools towards a higher quality of life. That said we should demand a system where 2nd opinions are not needed or at the very least free #patientchat |
 | Enlightening Results 💡 @GraceCordovano @patientchat Anyone who receives a life-altering diagnosis, like a chronic illness, rare disease, cancer, should get a 2nd opinion. Medical errors & misdiagnoses happen frequently. Be 150% positive you are in the right track before treatment planning that could impact life more #patientchat |
| Gigi Peterkin (she/her) 🎙♣️🏠🍷 @Gigi_Peterkin @MightyCasey #patientchat https://t.co/4krpi0fvPn |
| Ody @OdyO11 A3: Former negative experiences. It takes time to build trust, and first appointments can be physically and emotionally exhausting. #patientchat |
| Suzie Siegel @SuzieSiegel @yourgpsdoc @JamieRoger8 Because of #EMR & teaching hospitals, a patient can repeat their history multiple times in a day. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T6: Focus on the potential benefits. Take a friend, family member, or care partner to the visit. Do some research to determine the experts for your condition. Get recommendations from other patients (if possible). #patientchat |
| Patient Empowerment Network @power4patients RT @GraceCordovano: @patientchat Anyone who receives a life-altering diagnosis, like a chronic illness, rare disease, cancer, should get a… |
| Steve, dad of The Best DogS Ever @ScottsdaleVeins #patientchat Keep a 'dedicated notebook' for healthcare consult notes, Q&A, etc. Affix each physician's bus. card to it. Date each page. Take notes! Review them... Consults happen mighty fast. 😉 |
| Laurie Reed @LReedptadvocate Fantastic! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T6: take a trusted friend w/you to clinical appts; find a patient support group (NOT funded by #pharma!) to get tips; talk thru decision tree, options w/trusted fam + community. Practice standing up for yourself, it becomes automagic eventually. #patientchat |
| Ody @OdyO11 A4: Support groups which can recommend doctors with expertise in the diagnosis and with good bedside manners, as well as recommendations from other patients, can be a great support when it comes to seeking a second opinion. #patientchat |
| Patient Empowerment Network @power4patients RT @OdyO11: A4: Support groups which can recommend doctors with expertise in the diagnosis and with good bedside manners, as well as recomm… |
| Patient Empowerment Network @power4patients RT @MightyCasey: T6: take a trusted friend w/you to clinical appts; find a patient support group (NOT funded by #pharma!) to get tips; talk… |
 | Cameron J. Navy @navy_cameron RT @GraceCordovano: @patientchat Anyone who receives a life-altering diagnosis, like a chronic illness, rare disease, cancer, should get a… |
| Patient Empowerment Network @power4patients RT @patientchat: T6: What are your tips and/or advice for a patient who is nervous or hesitant to get a second opinion? #patientchat https:… |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: @H_SalemOaks One of the new programs we're rolling out this year is the Pro-Active Patient Toolkit that includes everyt… |
| Patient Chat @patientchat Topic 7 (T7:) coming up... https://t.co/9kVuhLEGlB #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @SuzieSiegel @JamieRoger8 Sometimes, repeating the story is the key to a correct diagnosis. Misinformation gets passed along from note to note. It's why I always ask patients/caregivers to tell me the story in their own words. This is truly a conundrum, b/c I never want to cause trauma #patientchat |
| Patient Chat @patientchat T7: How should a patient prepare for a second opinion appointment? #patientchat https://t.co/x99C4U5EsS |
| Alan Brewington @abrewi3010 A6 it’s your quality of life at stake. Ask yourself why you are nervous & go from there. PS I hate taking people/advocates with me to appointments. Don’t be afraid to limit team if need be. #patientchat |
| Beth Morton @beth_morton @GinaMcGalliard @ScottsdaleVeins @patientchat Yep, I work so much better with HCPs that appreciate my proactive manner. #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: T7: How should a patient prepare for a second opinion appointment? #patientchat https://t.co/x99C4U5EsS |
| Steve, dad of The Best DogS Ever @ScottsdaleVeins RT @patientchat: T7: How should a patient prepare for a second opinion appointment? #patientchat https://t.co/x99C4U5EsS |
| Gigi Peterkin (she/her) 🎙♣️🏠🍷 @Gigi_Peterkin A6. remind and help the patient to center the conversation on themselves. so many HCPs make the conversation about them. patient-centric starts with us, which is hard. we need support to face our potential dx but also to remember WE are at the center, IMO. #patientchat |
| Ody @OdyO11 A5: By building trust and by sharing information. Webinars and online videos of expert talks are ways to teach patients and to build trust. Also, patients with the same diagnosis can share their experiences with others and recommend doctors with expertise. #patientchat |
| Beth Morton @beth_morton A7. Gather relevant records. List/prioritize questions. I have a short health “resume” I bring that summarizes treatments (past, current, what did/didn’t work), other conditions, major bothersome symptoms/triggers/tracker, etc. As others have sugg, bring an advocate. #patientchat |
| Patient Empowerment Network @power4patients T6: Someone said it earlier...it helps to put it in perspective, would you buy something on Amazon w/o reading several reviews? Would you fork over $$$ to a car mechanic who didn't specialize in your kind of car? NO. So why wouldn't you do the same w/ your health? #patientchat |
| Jamie Roger @JamieRoger8 @yourgpsdoc @SuzieSiegel I completely understand the importance of telling the story, but it is SO traumatizing to have lived it, to tell the first doctor/ nurses/ everyone else involved at that facility, and then to relive ALL of that at a new facility on top of dealing with it in life. #patientchat |
| Bob Tufts @TuftsB T7 - First verify what test results need to be provided befotehand and what test results can be brought with you. #patientchat |
| Gigi Peterkin (she/her) 🎙♣️🏠🍷 @Gigi_Peterkin @patientchat A7 have copies of pertinent records and tests. know your symptoms - we all do but have dates recorded if needed. meditate. breathe. these appointments can be exhausting. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T7: Make a detailed list of both what you've been told by clinicians so far, and questions you have about dx/tx as outlined to date. Ask if you can record conversation w/MD as note-taking. Write up notes after visit. Lather/rinse/repeat. #epatient #s4pm #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T7: Read about your (suspected) condition. Come with a list of questions to focus the doctor and guide the appointment. Share any specific concerns you have about the proposed treatment. #patientchat |
| Ody @OdyO11 A5: It would also help if there were a way that patients could know that they will be "safe" when seeing a new doctor. That they will be believed and that they will be taken seriously. A "no 'it's in your head'-zone". #patientchat |
| @nwayne66 RT @beth_morton: There are now 569 certified #headache/#migraine specialists in the US. And only a handful of multidisciplinary clinics.… | |
| Your GPS Doc, LLC @yourgpsdoc RT @MightyCasey: T7: Make a detailed list of both what you've been told by clinicians so far, and questions you have about dx/tx as outline… |
| @nwayne66 RT @beth_morton: A1. If you have doubts or concerns about your diagnosis/treatments, or are dissatisfied with your current treatments, or i… | |
| Patient Empowerment Network @power4patients [REDACTED USER] @HealthNewsRevu @MayoClinic A fair challenge...but if it's even partially accurate, it pretty compelling #patientchat |
| Steve, dad of The Best DogS Ever @ScottsdaleVeins #patientchat Be forthright with your physician and team: Discuss your plan to get 2nd opinion. Quality providers willingly collaborate. Also, request a copy of your chart. Bring it along, w/ your notebook. Be proactive. @patientchat |
| @nwayne66 RT @beth_morton: A2. Not yet, unfortunately. I’m exploring options. I feel like there are a few unexplored avenues that my current speciali… | |
| Patient Empowerment Network @power4patients RT @yourgpsdoc: T7: Read about your (suspected) condition. Come with a list of questions to focus the doctor and guide the appointment. Sha… |
| Gigi Peterkin (she/her) 🎙♣️🏠🍷 @Gigi_Peterkin THIS is real talk. and if you're in pain or feeling dismissed it's harder. it's hard but shit we have to do it until someone hears and helps us. #patientchat |
| Patient Empowerment Network @power4patients RT @MightyCasey: T7: Make a detailed list of both what you've been told by clinicians so far, and questions you have about dx/tx as outline… |
| @nwayne66 RT @beth_morton: A3. Lots of things stop people from getting a 2nd opinion. Insurance & geographic barriers. Shortages of certain types of… | |
| Your GPS Doc, LLC @yourgpsdoc @JamieRoger8 @SuzieSiegel I totally understand that. I'm so sorry. #patientchat |
 | ruhnt. gn @xraypenumbra @patientchat Lack of finances to go from one doctor to another especially in developing countries as well as not knowing that they can actually seek for a second opinion #patientchat |
| Ody @OdyO11 A6: Talk to other patients with the same diagnosis. Get their recommendation on which doctors to see. #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 |
| @nwayne66 RT @beth_morton: A4. My barriers are challenging. For one, I need more specialists in #headache & #migraine. I also need #telemedicine to b… | |
| Alan Brewington @abrewi3010 A7 just be you. Go tell the doc why you are there and what you want your quality of life to look like. Everything else will work itself out. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @beth_morton: A7. Gather relevant records. List/prioritize questions. I have a short health “resume” I bring that summarizes treatments… |
| Laurie Reed @LReedptadvocate @power4patients Absolutely. #patientchat |
| Suzie Siegel @SuzieSiegel @JamieRoger8 @yourgpsdoc Luckily, it doesn't traumatize me to repeat my story to another health-care professional, but I do find myself trying to make it quicker & shorten the story. That can lead to leaving out important info or creating confusion. #patientchat |
| @nwayne66 RT @beth_morton: A5. I think by remembering that doctors each have different training and philosophies. Just because you’ve seen one, doesn… | |
| @nwayne66 RT @power4patients: T5: This stat sealed the deal for us: a study done by Mayo Clinic showed that 88% of patients who get a second opinion… | |
| 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… |
| Suzie Siegel @SuzieSiegel RT @beth_morton: A7. Gather relevant records. List/prioritize questions. I have a short health “resume” I bring that summarizes treatments… |
| @nwayne66 RT @MightyCasey: T7: Make a detailed list of both what you've been told by clinicians so far, and questions you have about dx/tx as outline… | |
| Jamie Roger @JamieRoger8 @yourgpsdoc @SuzieSiegel No need to apologize. It sucked but it also got me the treatment I needed and a wonderful surgeon. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @SuzieSiegel @JamieRoger8 Great point! I’m sure you’re not alone in this. #patientchat |
| @nwayne66 RT @power4patients: T6: Someone said it earlier...it helps to put it in perspective, would you buy something on Amazon w/o reading several… | |
| @nwayne66 RT @MightyCasey: T6: take a trusted friend w/you to clinical appts; find a patient support group (NOT funded by #pharma!) to get tips; talk… | |
| @K_SalemOaks I think it would be good to prepare as if seeking the first diagnosis. Remember, this new doctor has not seen you before. You need to provide the background. #patientchat | |
| Beth Morton @beth_morton CT: I'm re-energized to make calls and find a specialist or clinic to consult. I'm just up against some barriers (insurance, travel) that seem daunting. #patientchat |
| @nwayne66 RT @OdyO11: A4: Support groups which can recommend doctors with expertise in the diagnosis and with good bedside manners, as well as recomm… | |
| @nwayne66 RT @H_SalemOaks: T5: In line with my other answers, demystifying the process. A step by step guide or a list of common obstacles and ways a… | |
| @ [REDACTED USER] @HealthNewsRevu @MayoClinic @power4patients This is scary coming from @MayoClinic. They have a terrible reputation w/chronic fatigue syndrome community because they still treat patients with the dubunked and potentially harmful treatments graded exercise and CBT. Seriously, what’s going on over there, guys? #patientchat | |
| @nwayne66 RT @beth_morton: A6. Consider the biggest gaps in your current needs (finding a current diagnosis, better treatment, etc), seek out recs fo… | |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: don't be a meat puppet. ask questions, keep asking until you get answers you can understand, that you can make sense of. keep records/notes, keep 'em in your phone for easy use in clinic. lather/rinse/repeat (again) #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Suzie Siegel @SuzieSiegel @yourgpsdoc @JamieRoger8 I also recommend that patients look at their doctors' records to check for errors. #patientchat |
| Jamie Roger @JamieRoger8 THank you #patientchat and everyone that was involved today. Great discussion, I hope everyone involved that needs a second opinion now has the courage and motivation to do so. #liveyourbestlife #secondopinion |
| Patient Chat @patientchat We hope you all can join us again in two weeks for the next #patientchat on February 8th https://t.co/7URZ2RK9mM |
| Steve, dad of The Best DogS Ever @ScottsdaleVeins #patientchat Healthcare innovation moves as fast as new technologies. No one provider can possibly know 'all the latest'. It's OK to get a 2nd opinion. It's encouraged! #YourHealthIsYourWealth 😃 |
 | Fired Mom @Ms_Autoimmune Hello from Maine. Im reminded as I start to weaken in the days before my IVIG treatment that I really do have a chronic rare disease. But, I'm so grateful to have treatments that work!!!#patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Your GPS Doc, LLC @yourgpsdoc CT: Second opinions are important and may lead to a new diagnosis or treatment plan, but there are many barriers and some patients are reluctant. Making this process easier for patients should be a focus for HCPs/health systems. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @SuzieSiegel @JamieRoger8 I ditto that! #patientchat |
 | Marni Cartelli @Purrfectly_Rare #patientchat Just jumping in late on this 1 Every Dr I had encouraged me 2 take my results 4 a 2nd opinion esp b4 my surgeries & major Dx 1 told me he always appreciates a 2nd set of eyes on a complex problem It isnt about right or wrong but what is best option 4 individual pt |
| Your GPS Doc, LLC @yourgpsdoc @patientchat Thank you for another informative, engaging #patientchat! |
| Laurie Reed @LReedptadvocate RT @JamieRoger8: THank you #patientchat and everyone that was involved today. Great discussion, I hope everyone involved that needs a seco… |
| Ody @OdyO11 @yourgpsdoc @SuzieSiegel @JamieRoger8 Imho, misinformation can cause trauma, too, because patients might not get the right diagnosis, might not be believed etc. I highly appreciate it when doctors ask me directly and don't rely on notes. In complex cases, notes are likely to be faulty and often biased. #patientchat |
| Alan Brewington @abrewi3010 CT mistakes will happen, will happen a lot. Fix what you can and ask “how might we...?” With #everyoneincluded the other times. Human centered problems can be fixed with human centered solutions #patientchat |
 | Victor Montori, MD 💙 @vmontori RT @MightyCasey: T6: take a trusted friend w/you to clinical appts; find a patient support group (NOT funded by #pharma!) to get tips; talk… |
| Your GPS Doc, LLC @yourgpsdoc @GinaMcGalliard @K_SalemOaks Yes, this is a big problem. The time allotted for appointments really doesn't allow enough time for adequate chart review. Very unfortunate for all parties. #patientchat |
| Suzie Siegel @SuzieSiegel @malkabethwendy No one should ever tell me to be brave if they are in kicking distance. It's insulting to patients. As a volunteer, I talk to patients about what strategies might reduce their anxiety. #patientchat |
| Tinu Abayomi-Paul aka Empress of Twerk. NO DMs @Tinu Great point #PatientChat |
| Suzie Siegel @SuzieSiegel @OdyO11 One problem I see in online support groups is that patients will recommend a doctor they love, whether or not that doctor has any special expertise in #sarcoma. #patientchat |
| Suzie Siegel @SuzieSiegel RT @MightyCasey: T6: take a trusted friend w/you to clinical appts; find a patient support group (NOT funded by #pharma!) to get tips; talk… |
| Marni Cartelli @Purrfectly_Rare #patientchat I think any pt with a serious Dx should def. get a 2nd opinion Additionally any pt who is concerned about their Tx protocols or level of care Any good Dr shouldn't hold it against a pt for seeking out another opinion, or several (I've had lots of 2nd opinions) |
| Ody @OdyO11 @SuzieSiegel I think the key is finding specialized support groups. In order to find them, on the other hand, you need to know or at least suspect first what your diagnosis might be... #patientchat |
 | September Dresan @SeptemberDresan RT @Tinu: A3. Having multiple chronic illnesses, one being depression... It's partly not feeling ready to take the idea of more bad news.… |
| Suzie Siegel @SuzieSiegel RT @yourgpsdoc: T6: Focus on the potential benefits. Take a friend, family member, or care partner to the visit. Do some research to determ… |
| Marni Cartelli @Purrfectly_Rare #patientchat A3.I think patients are afraid of offending doctors & worried if they do their level of care will decrease Additionally the amount of time it takes to get an apt w a new doc can play a role |
| Suzie Siegel @SuzieSiegel @GinaMcGalliard @abrewi3010 I dress up for new appointments. I don't know if that gets me more respect, but I think it helps the professional think I'm more educated & can understand more details. #patientchat |
| Ody @OdyO11 [REDACTED USER] @power4patients @HealthNewsRevu @MayoClinic That's true. I often wonder what doctors who didn't follow up with me think about my case and how they would diagnose patients with similar symptoms. Often, they were wrong, but they won't know about it. Maybe I should tell them. #patientchat |
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