#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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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
Kimberly Amelia @fireflyrn84
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
Kimberly Amelia @fireflyrn84
@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 @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
Kimberly Amelia @fireflyrn84
@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
Kimberly Amelia @fireflyrn84
@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
Kimberly Amelia @fireflyrn84
@abrewi3010 @JamieRoger8 @Chris_Anselmo Hey there! #patientchat
Kimberly Amelia @fireflyrn84
@JamieRoger8 @Chris_Anselmo @abrewi3010 I'm on 7 weeks of respiratory junk #patientchat
Mighty Casey Quinlan @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
Kevin Freiert @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
Kimberly Amelia @fireflyrn84
@K_SalemOaks I also enjoy pizza, is that the opinion you were looking for? Second opinion it is :) #patientchat
Kevin Freiert @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
Kimberly Amelia @fireflyrn84
@dys_les @patientchat Hey stranger! So glad you're here! #patientchat
z 🦜 @zebrafinch
RT @patientchat: We start out with introductions - Those joining in, please take a moment to introduce yourself. #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
z 🦜 @zebrafinch
RT @patientchat: Today's #patientchat topic is Finding Your Voice - What Stops People from Getting a Second Opinion? https://t.co/Jw44e7F0yK
z 🦜 @zebrafinch
RT @patientchat: You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/Vgxd45poj0 #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 @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
Seth Rotberg @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
Kimberly Amelia @fireflyrn84
@beth_morton Hi Beth! Hope things are going smoother #patientchat
Heather McCullen @H_SalemOaks
hi #patientchat Heather joining from outside of Ann Arbor MI
ReedsBooks @LReedsbooks
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 @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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
Hello, I'm Malka Beth, I'm disabled as is my husband, so beyond my various kinds of activism I'm a combination of "caregiver" & "needer of care" - Very good topic today for me, as someone who's spent most of her life misdiagnosed. #patientchat
Kimberly Amelia @fireflyrn84
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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @patientchat: T1: What are your thoughts on getting a second opinion? Who should seek one? #patientchat https://t.co/zL7FbbpRPF
Kimberly Amelia @fireflyrn84
@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
Annette McKinnon @anetto
Annette here in Toronto. Member of @patientAdvisors a Very Experienced Patient : ) VEP #patientChat
Patient Empowerment @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
Kimberly Amelia @fireflyrn84
Exactly, do what feels best! Go with your gut!! #patientchat
Patient Empowerment @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
ReedsBooks @LReedsbooks
@abrewi3010 T1 -- Why put a spin on it of 'doctor shopping'? where is that coming from? #patientchat
Kimberly Amelia @fireflyrn84
@anetto @PatientAdvisors 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 @power4patients
RT @yourgpsdoc: T1: Second opinions are wonderful and are absolutely necessary for high stakes situations, which I define as serious/life-t…
Annette McKinnon @anetto
T1 I I would be very tactful, and might go outside of the system i.e. online paid Dr site #patientchat
Patient Health @MD4U
RT @patientchat: Today's #patientchat topic is Finding Your Voice - What Stops People from Getting a Second Opinion? https://t.co/Jw44e7F0yK
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat Everyone, especially with chronic or life altering conditions. Physicians have different experiences, expertise, knowledge and paths for care. It is important to know your options, and how a condition may affect you. Bedside manner is also key. #patientchat #raredisease
Seth Rotberg @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 @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 @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
Kimberly Amelia @fireflyrn84
@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 @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 @power4patients
RT @yourgpsdoc: @H_SalemOaks I totally understand this. I wish the healthcare system made this easier because the first opinion may not alw…
Annette McKinnon @anetto
T1 Usually I am confident in the referral. I often ask to see a Dr I know something about. #patientchat
Kevin Freiert @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat Hi! I’m heather - person living with Cowden Syndrome & Lhermitte-duclos Disease. Newbie #PatientAdvocate too! #patientChat #pten
Patient Empowerment @power4patients
RT @gratefull080504: A1) I have asked for 2nd opinions twice: 1) Diagnosis of #KidneyDisease 2) Treatment plan for #prostatecancer If yo…
Kimberly Amelia @fireflyrn84
@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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T1: It should often be sought, as should further attempts at proper diagnosis but it's a balancing act. For truly emergency situations & setups where getting said other people to consider other options would almost certainly cause more harm, they shouldn't be sought. #patientchat
Patient Empowerment @power4patients
@Rose_of_Sharon8 @patientchat Totally agree! #patientchat
ReedsBooks @LReedsbooks
RT @melissarvh: T1 Sometimes necessary, especially if my questions & concerns were not adequately addressed, if several possibilities for d…
ReedsBooks @LReedsbooks
RT @JamieRoger8: @fireflyrn84 Being referred for a second opinion was the best thing that could have happened to me. My doctor knew he was…
Kevin Freiert @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 @power4patients
RT @JamieRoger8: @fireflyrn84 Being referred for a second opinion was the best thing that could have happened to me. My doctor knew he was…
Patient Empowerment @power4patients
RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB
Seth Rotberg @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
ReedsBooks @LReedsbooks
RT @gratefull080504: A1) I have asked for 2nd opinions twice: 1) Diagnosis of #KidneyDisease 2) Treatment plan for #prostatecancer If yo…
Patient Chat @patientchat
RT @Rose_of_Sharon8: @patientchat Everyone, especially with chronic or life altering conditions. Physicians have different experiences, exp…
Annette McKinnon @anetto
T1 Can the issue in finding your voice for some patients stem from their lack of confidence in their health literacy? #patientchat
Kevin Freiert @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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
For my & my husband's medical problems- highly long-term in nature- it made good sense to seek other opinions, especially as the initial diagnosis & treatments offered had so many problems/flaws. #patientchat
ReedsBooks @LReedsbooks
RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @Rose_of_Sharon8: @patientchat Everyone, especially with chronic or life altering conditions. Physicians have different experiences, exp…
Kimberly Amelia @fireflyrn84
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 @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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB
Jamie Roger @JamieRoger8
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 @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 @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 @power4patients
RT @fireflyrn84: T2: Absolutely, I actually saw 6 endocrinologists when we were working on getting initial #dysautonomia diagnosis (we didn…
Kevin Freiert @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
Kimberly Amelia @fireflyrn84
@anetto 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
ReedsBooks @LReedsbooks
@power4patients I'm so sorry. #patientchat
Patient Empowerment @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…
PSC Partners Seeking a Cure @PSCPartners
RT @patientchat: T1: What are your thoughts on getting a second opinion? Who should seek one? #patientchat https://t.co/zL7FbbpRPF
Annette McKinnon @anetto
RT @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…
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 @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 @Tinu
RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB
Kimberly Amelia @fireflyrn84
@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
ReedsBooks @LReedsbooks
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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T2: my initial opinions were so filled with diagnosis & treatment option flaws that I modified things in between, that "2nd opinion" (closer2 a 40th, about25years later)made me change my approach in that it encouraged me to go further in trusting my insticts. #patientchat
Patient Empowerment @power4patients
RT @patientchat: T3: What do you think stops some patients from getting a second opinion following a serious diagnosis? #patientchat https:…
Inspire @teaminspire
RT @patientchat: T2: Have you ever received a second opinion that changed your treatment approach? #patientchat https://t.co/kWCtdULAdB
ReedsBooks @LReedsbooks
RT @patientchat: T3: What do you think stops some patients from getting a second opinion following a serious diagnosis? #patientchat https:…
Patient Empowerment @power4patients
@gratefull080504 Yes, Yes and YES! #patientchat
Kimberly Amelia @fireflyrn84
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
Kevin Freiert @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
IFFGD @IFFGD
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…
Kevin J. Fowler @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 @Tinu
A2. A 2nd opinion informed me I'd never need to have a painful procedure ever again. #patientchat
Tinu @Tinu
RT @patientchat: T3: What do you think stops some patients from getting a second opinion following a serious diagnosis? #patientchat https:…
ReedsBooks @LReedsbooks
@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…
Kevin Freiert @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…
Kimberly Amelia @fireflyrn84
@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
IFFGD @IFFGD
RT @beth_morton: A1. If you have doubts or concerns about your diagnosis/treatments, or are dissatisfied with your current treatments, or i…
ReedsBooks @LReedsbooks
@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 @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
Annette McKinnon @anetto
@Rose_of_Sharon8 @patientchat Agree. The experience of treatment can affect patient's outcome, as well as the treatment. So the attitudes and manner of the health professionals can make o big difference #patientchat
Kimberly Amelia @fireflyrn84
@JamieRoger8 It's a hard step to take and a scary one at that. #patientchat
ReedsBooks @LReedsbooks
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
Kevin Freiert @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 @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
Kimberly Amelia @fireflyrn84
110% agreed #patientchat
Patient Empowerment @power4patients
@LReedsbooks @patientchat That's really unbelievable, but sadly I believe it #patientchat
Your GPS Doc, LLC @yourgpsdoc
RT @fireflyrn84: @K_SalemOaks I think bringing a team of doctors together in a room is a great idea. Brainstorming and saving appointments…
Tinu @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 @power4patients
#patientchat
Tinu @Tinu
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…
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
Tinu @Tinu
RT @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…
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…
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@abrewi3010 This issue is very hard to navigate in a medical system where patients are often judged guilty before innocent. #patientchat
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 @Tinu
RT @gratefull080504: A2: I trusted my instincts when my primary care wanted to refer me to community nephrologist I sought out my nephrolog…
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat Believing that 1 doctor has the answers, that all doctors know about all conditions or have the first hand experience needed, and being sick, overwhelmed, stressed and tired, limited time and finances, and/or not sure where to go next. #patientchat
Tinu @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…
Kimberly Amelia @fireflyrn84
@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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T3: The emergency nature that some of them truly have,how difficult going through all the appointments4all the different tests are&the "coverage" aspect of them, money being a very real barrier. I often waited 2-4 years in between trying2get answers, over fatigue. #patientchat
Seth Rotberg @Srotberg15
Yes to all of this! #patientchat
Patient Empowerment @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
Marie Ennis-O'Connor @JBBC
RT @anetto: T1 Can the issue in finding your voice for some patients stem from their lack of confidence in their health literacy? #patientc
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 @Tinu
RT @yourgpsdoc: T3: I think many patients avoid second opinions due to fear of offending the 1st doc, fear of disease progression/lack of t…
Sharon Rose Nissley @Rose_of_Sharon8
@yourgpsdoc @JamieRoger8 Good point! Agreed @JamieRoger8 #patientchat
Tinu @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…
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @melissarvh: T3 Fear- Fear of getting worse or conflicting news, fear that their original doc will be angry or dismiss them entirely, or…
Patient Empowerment @power4patients
RT @Tinu: A3. Having multiple chronic illnesses, one being depression... It's partly not feeling ready to take the idea of more bad news.…
Tinu @Tinu
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
@LReedsbooks @patientchat Amen! #patientchat
Patient Empowerment @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 @gratefull080504
#patientchat Have to run
Kimberly Amelia @fireflyrn84
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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat A2 yes because it can be difficult to find a doctor who accepts complex patients. There’s a huge design problem in medicine where specific diseases are tested for and everyone else goes in the idiopathic“wastebasket” category, who get taken the least seriously. #patientchat
Mighty Casey Quinlan @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. <back in the office> #patientchat
Heather McCullen @H_SalemOaks
RT @GinaMcGalliard: @patientchat A2 yes because it can be difficult to find a doctor who accepts complex patients. There’s a huge design pr…
Kimberly Amelia @fireflyrn84
@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
𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 🇨🇦❤️ @NatriceR
RT @anetto: T1 Can the issue in finding your voice for some patients stem from their lack of confidence in their health literacy? #patientc
Tinu @Tinu
A3. Also, history of poor treatment by doctors makes one want to minimize contact as much as possible. #patientchat
Scottsdale Vein Ctr @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 @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.…
Tinu @Tinu
RT @GinaMcGalliard: @abrewi3010 This issue is very hard to navigate in a medical system where patients are often judged guilty before innoc…
Suzie Siegel @SuzieSiegel
.@SarcomaAlliance @CureSarcoma & other nonprofits list comprehensive #sarcoma centers so that patients know where to go for a second opinion. #patientchat
Mighty Casey Quinlan @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
Tinu @Tinu
RT @Rose_of_Sharon8: @patientchat Believing that 1 doctor has the answers, that all doctors know about all conditions or have the first han…
Scottsdale Vein Ctr @ScottsdaleVeins
RT @patientchat: T3: What do you think stops some patients from getting a second opinion following a serious diagnosis? #patientchat https:…
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T4: Medical practices shouldn't ban patients from seeing other Drs in their practice, for over 5 years there was only one place that had neurologists in my county-8 or so Drs, said facility had a ban on patients seeing more than 1 of their Dr's & switching. #patientchat
Tinu @Tinu
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…
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
ReedsBooks @LReedsbooks
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
Kevin Freiert @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 Casey Quinlan @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 @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
Heather McCullen @H_SalemOaks
RT @Tinu: A3. Having multiple chronic illnesses, one being depression... It's partly not feeling ready to take the idea of more bad news.…
Patient Empowerment @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…
Kimberly Amelia @fireflyrn84
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
Scottsdale Vein Ctr @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
Melissa VanHouten @melissarvh
RT @JamieRoger8: @patientchat I think first and foremost, doctors should be concerned with the best interest of the patient and be self-awa…
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat Health Care pro's: Always pretend this patient is your best friend. You would want them to get a 2nd opinion. Suggest a specialist who may know more. We respect "I don't know." more than "No, this doesn't cause that!" You wouldn't want your BFF feeling sick & lost #patientchat
Ody_O @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 Casey Quinlan @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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T4: continued #patientchat that facility did eventually get "competition" but it took over 5 years for this to occur, I'm certain this harmed many people.
Patient Empowerment @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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@patientchat A4 We need to abolish this nefarious idea that many patients want to be sick & have formed their identity around it. Sounds crazy, but there’s an entire medical vocabulary built around this idea, w/terms like “illness seeking behavior” & “primary and secondary gains” #patientchat
ReedsBooks @LReedsbooks
@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 @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 Casey Quinlan @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
ReedsBooks @LReedsbooks
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 @Tinu
RT @K_SalemOaks: This is really tough. The value of getting more information can actually become discouraging. Thanks for sharing - you'v…
Your GPS Doc, LLC @yourgpsdoc
RT @Rose_of_Sharon8: @patientchat Health Care pro's: Always pretend this patient is your best friend. You would want them to get a 2nd opin…
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 @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
Carolyn Holmes @HolmesCarolyn23
RT @patientchat: T5: How can we encourage patients to see the value in seeking a second opinion? #patientchat https://t.co/5zwI73I9Vk
Patient Empowerment @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
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat It is worth the effort, to help you to feel better, get treatment, or have a physician who "gets it", rather than sit in the situation and frustration, take action, because you are worth it! Doctors have 15 minutes with you, and have bad days, answers are out there. #patientchat
Kevin Freiert @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…
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
@yourgpsdoc It was completely legal&unethical, they'd say direct sometimes"just go to____" The blank being filled with a few other places- generally New York City or Albany,NY. Many insurance plans would cover you if u went south to NYC but that shouldn't be a good enough excuse!#patientchat
Ody_O @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_O @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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @beth_morton: @malkabethwendy In my current headache clinic, I'm not allowed to consult with the other specialist in the practice and it…
Mighty Casey Quinlan @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 @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…
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@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 @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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
RT @melissarvh: T4 This is a HUGE problem! #PatientChat https://t.co/cQMo5e1m2J
ReedsBooks @LReedsbooks
@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_O @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 @power4patients
@Gigi_Peterkin @MightyCasey Hey Gigi! It's been a long time! #patientchat
Mighty Casey Quinlan @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
Inspire @teaminspire
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:…
Your GPS Doc, LLC @yourgpsdoc
This sounds phenomenal! #patientchat
ReedsBooks @LReedsbooks
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 Casey Quinlan @MightyCasey
@Gigi_Peterkin #patientchat https://t.co/Yn9TGdfiuD
Scottsdale Vein Ctr @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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@abrewi3010 A4 Spot on. When I started taking my mom to appointments with me I noticed a huge positive change in the care I received and the respect with which I was treated. I highly recommend everyone take an advocate with them to appointments. #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 @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
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T5: Sharing the survival& thrival stories is important but so is breaking down the very real barriers to getting them. #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 @Gigi_Peterkin
@MightyCasey #patientchat https://t.co/4krpi0fvPn
Ody_O @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 @power4patients
RT @GraceCordovano: @patientchat Anyone who receives a life-altering diagnosis, like a chronic illness, rare disease, cancer, should get a…
Scottsdale Vein Ctr @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. 😉
ReedsBooks @LReedsbooks
Fantastic! #patientchat
Mighty Casey Quinlan @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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@ScottsdaleVeins @patientchat Yes, and seek out an HCP that welcomes a proactive patient, rather than accusing them of having “cybercondria” 😜 BTW I found out that’s an actual term some docs use among themselves. Not kidding. #patientchat
Ody_O @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
Suzie Siegel @SuzieSiegel
RT @yourgpsdoc: T3: I think many patients avoid second opinions due to fear of offending the 1st doc, fear of disease progression/lack of t…
Patient Empowerment @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 @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…
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@ScottsdaleVeins Yep, I’ve got my notebook! 📒 #patientchat
Scottsdale Vein Ctr @ScottsdaleVeins
RT @GinaMcGalliard: @ScottsdaleVeins @patientchat Yes, and seek out an HCP that welcomes a proactive patient, rather than accusing them of…
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 @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 Casey Quinlan @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…
♿🔯 ❌ Grundfest-Frigeri #GiveAssangeANobel @malkabethwendy
T6: You're anxiety is very justified, but show bravery on this- bravery being "feeling the fear but moving forward anyway". It is worth it, even as it's often a firewalk to get to the beautiful destination. #patientchat
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
Claire @clairehsnyman
@power4patients Would agree with the NB of 2nd opinion esp. when critical diagnosis - My 2nd opinion said a 2nd brain surgery was not necessary & my loss of balance was indeed due to vestibular migraines (jut needed a Rx) - WOW - that would have been a bad call! Phew😅 #patientchat
Claire @clairehsnyman
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 Chat @patientchat
T7: How should a patient prepare for a second opinion appointment? #patientchat https://t.co/x99C4U5EsS
Carolyn Thomas @HeartSisters
Whoah.... here's the @HealthNewsRevu evaluation of that @MayoClinic study including this disclaimer: “Because we are a referral practice, there is no longitudinal FOLLOW-UP of patients to confirm the second opinion” https://t.co/Iw2RD2dra9 #patientchat @power4patients
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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@SuzieSiegel @yourgpsdoc @JamieRoger8 This in itself can be emotionally draining. I’ve had three medical appointments in the last two days and today I think I’m just going to curl up in bed just to recover from being triggered. 🛌 #patientchat
Inspire @teaminspire
RT @patientchat: T7: How should a patient prepare for a second opinion appointment? #patientchat https://t.co/x99C4U5EsS
Scottsdale Vein Ctr @ScottsdaleVeins
RT @patientchat: T7: How should a patient prepare for a second opinion appointment? #patientchat https://t.co/x99C4U5EsS
Gigi Peterkin @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
BayRidgeVet @BayRidgeVet
RT @gratefull080504: A) Placing implicit in the US Healthcare System that is not designed for them Once you understand US healthcare is no…
Ody_O @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 @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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@ScottsdaleVeins @patientchat YES. And dump any doc who’s critical of this. I’m from a journalist background,& told one of my editors that any authoritarian rather than collaborative-minded doc should hang a sign on their door saying “no journalists as patients please.” He laughed hysterically. #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 @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 Casey Quinlan @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_O @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
I Slapped Devin Nunes and Ouiser Boudreaux @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…
I Slapped Devin Nunes and Ouiser Boudreaux @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 @power4patients
@HeartSisters @HealthNewsRevu @MayoClinic A fair challenge...but if it's even partially accurate, it pretty compelling #patientchat
Scottsdale Vein Ctr @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
I Slapped Devin Nunes and Ouiser Boudreaux @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 @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 @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 @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…
I Slapped Devin Nunes and Ouiser Boudreaux @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
pepper @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_O @OdyO11
A6: Talk to other patients with the same diagnosis. Get their recommendation on which doctors to see. #patientchat
Mighty Casey Quinlan @MightyCasey
RT @GinaMcGalliard: @ScottsdaleVeins @patientchat YES. And dump any doc who’s critical of this. I’m from a journalist background,& told one…
Scottsdale Vein Ctr @ScottsdaleVeins
RT @GinaMcGalliard: @ScottsdaleVeins @patientchat YES. And dump any doc who’s critical of this. I’m from a journalist background,& told one…
Sharon Rose Nissley @Rose_of_Sharon8
@patientchat Jot down important questions during the week, include symptoms, bring your narrowed list. Bring important reports/diagnosis & recent scans. I don't bust out my file cabinet unless it's necessary. Stick to the specialty this Dr focuses on. You only have 15 minutes. #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
I Slapped Devin Nunes and Ouiser Boudreaux @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…
ReedsBooks @LReedsbooks
@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
I Slapped Devin Nunes and Ouiser Boudreaux @nwayne66
RT @beth_morton: A5. I think by remembering that doctors each have different training and philosophies. Just because you’ve seen one, doesn…
I Slapped Devin Nunes and Ouiser Boudreaux @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 @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…
I Slapped Devin Nunes and Ouiser Boudreaux @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
I Slapped Devin Nunes and Ouiser Boudreaux @nwayne66
RT @yourgpsdoc: T7: Read about your (suspected) condition. Come with a list of questions to focus the doctor and guide the appointment. Sha…
Scottsdale Vein Ctr @ScottsdaleVeins
RT @power4patients: T6: Someone said it earlier...it helps to put it in perspective, would you buy something on Amazon w/o reading several…
Your GPS Doc, LLC @yourgpsdoc
@SuzieSiegel @JamieRoger8 Great point! I’m sure you’re not alone in this. #patientchat
I Slapped Devin Nunes and Ouiser Boudreaux @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…
Patient Empowerment @power4patients
RT @ScottsdaleVeins: #patientchat Be forthright with your physician and team: Discuss your plan to get 2nd opinion. Quality providers will…
I Slapped Devin Nunes and Ouiser Boudreaux @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…
Kevin Freiert @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
I Slapped Devin Nunes and Ouiser Boudreaux @nwayne66
RT @OdyO11: A4: Support groups which can recommend doctors with expertise in the diagnosis and with good bedside manners, as well as recomm…
I Slapped Devin Nunes and Ouiser Boudreaux @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…
I Slapped Devin Nunes and Ouiser Boudreaux @nwayne66
RT @beth_morton: A7. Gather relevant records. List/prioritize questions. I have a short health “resume” I bring that summarizes treatments…
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@HeartSisters @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
I Slapped Devin Nunes and Ouiser Boudreaux @nwayne66
RT @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 (insuranc…
I Slapped Devin Nunes and Ouiser Boudreaux @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 Casey Quinlan @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
Scottsdale Vein Ctr @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 😃
Dawn DeBois @MyBattleWithin
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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@K_SalemOaks True, but doctors need to review patients’ charts before appointments. I’ve had some instances where it was clear they didn’t, and not only did I feel degraded and deflated but I lost trust in them as a provider. #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!
ReedsBooks @LReedsbooks
RT @JamieRoger8: THank you #patientchat and everyone that was involved today. Great discussion, I hope everyone involved that needs a seco…
Ody_O @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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@OdyO11 Yes! This is particularly true for female patients. Every health care professional should be required to read Doing Harm by @mayadusenbery, which goes into detail about medical sexism. #patientchat
Tinu @Tinu
Great point #PatientChat
Carolyn Thomas @HeartSisters
@power4patients @HealthNewsRevu @MayoClinic It *would* be compelling, if we knew how accurate the findings are. That's the issue - we do NOT know (because of admitted "no follow-up"). Read the @HealthNewsRevu article which explains in detail why the media headlines are problematic... #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)
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
@OdyO11 @yourgpsdoc @SuzieSiegel @JamieRoger8 Yes, this is why the @myopennotes movement is so important #patientchat
Ody_O @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
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
RT @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 som…
GinaMcGalliard 🧜🏻‍♀️☘️🌙 @GinaMcGalliard
RT @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 the…
Karen Galler @Karenrosegt
RT @beth_morton: A7. Gather relevant records. List/prioritize questions. I have a short health “resume” I bring that summarizes treatments…
Karen Galler @Karenrosegt
RT @yourgpsdoc: T6: Focus on the potential benefits. Take a friend, family member, or care partner to the visit. Do some research to determ…
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_O @OdyO11
@HeartSisters @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
#patientchat content from Twitter.