#patientchat Transcript

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

ProfileTweet
Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
Happy Friday! I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat 😊
Abner Mason @abnermason
Hi, all! I hope your Friday's going great. My name's Abner Mason. Excited to be here for my first #patientchat. About me: I run @ConsejoSano_US & spent years in state and fed government. My life's work is connecting culturally diverse patients—like you, me & our families—to care.
Rhea Beauchesne @rhea_beauchesne
Hi! I’m a research assistant with [REDACTED USER], working mainly on the Practice aim. Let’s get started! #PatientChat
ROHHADwarrior @ROHHAD_warrior
@patientchat Good afternoon, I’m Sarah with a rare Disease called ROHHAD. It is actually a syndrome. #patientchat
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Abner Mason @abnermason
[REDACTED USER] @patientchat [REDACTED USER] [REDACTED USER] @NicolaK39 [REDACTED USER] @rhea_beauchesne Great to meet you, Tasha. Seems like you're doing some great work. #patientchat
Rhea Beauchesne @rhea_beauchesne
@patientchat Hi! I’m a research assistant with [REDACTED USER], working mainly on the Practice aim. Let’s get started! #PatientChat
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat
Patient Chat @patientchat
Today's #patientchat topic is Genome-Wide Sequencing: What an Empowered Patient Needs to Know https://t.co/MroF1mkuvE
Patient Empowerment Network @power4patients
Hi #patientchat! My name is Kara from @power4patients and I'm looking forward to chatting and learning from everyone today
Patient Empowerment Network @power4patients
RT @patientchat: Today's #patientchat topic is Genome-Wide Sequencing: What an Empowered Patient Needs to Know https://t.co/MroF1mkuvE
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of your answer - hard to remember but helpful #patientchat
Natalie 🦓 @_Nataliea
Guess I should tune into this. Have a #raredisease and my genes are floating around various labs in the hopes that they will find something. #PatientChat
Patient Chat @patientchat
@_Nataliea Welcome! Happy you could tune in today #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Patient Chat @patientchat
T1: What is genome-wide sequencing? #patientchat https://t.co/6qrkhIUxSh
Diverse Health Hub @DHealthhub
RT @patientchat: Today's #patientchat topic is Genome-Wide Sequencing: What an Empowered Patient Needs to Know https://t.co/MroF1mkuvE
Patient Empowerment Network @power4patients
RT @patientchat: T1: What is genome-wide sequencing? #patientchat https://t.co/6qrkhIUxSh
Abner Mason @abnermason
[REDACTED USER] @patientchat T1: This is concise and helpful. I'm curious: Am I right in assuming that most patients know very little about genome-wide sequencing until they need it? #patientchat
ROHHADwarrior @ROHHAD_warrior
@patientchat T1: genome- wide sequencing is looking at a large set of DNA and comparing an individual’s to the “normal” pattern to detect anything out of the ordinary that may cause a disease. #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up..... #patientchat
Patient Empowerment Network @power4patients
What are your thoughts #patientchat? Have you heard about genome-wide sequencing?
Patient Chat @patientchat
T2: Why would someone have genome-wide sequencing? #patientchat https://t.co/l0lSA8z1gi
Patient Chat @patientchat
#patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T2: Why would someone have genome-wide sequencing? #patientchat https://t.co/l0lSA8z1gi
Rhea Beauchesne @rhea_beauchesne
@patientchat T2: It is usually used for the diagnosis of genetic conditions. Although most people are receiving this type of genetic testing because they are involved in large research studies, many people are also starting to have GWS through routine clinical care. #PatientChat
ROHHADwarrior @ROHHAD_warrior
@patientchat T2: I know I personally have had testing to see if there was a genetic cause to my medical condition. You can see if it is genetic or possibly autoimmune. #patientchat
Abner Mason @abnermason
[REDACTED USER] @patientchat T1: That makes sense. And I'm glad to hear you're seeing trends in the right direction. #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up..... #patientchat
Abner Mason @abnermason
@ROHHAD_warrior @patientchat T2: Did you and your care team get solid answers from the testing? #patientchat
Natalie 🦓 @_Nataliea
@patientchat #A2 #patientchat - mine are sequenced as part of a natural history study for my #raredisease - it’s sporadic and not inherited so it’s not easy to find the genes that cause(s) it with SO. MANY. GENES. 😂
Patient Chat @patientchat
T3: What is genetic counseling? #patientchat https://t.co/27AHZLNZ6K
Patient Empowerment Network @power4patients
RT @patientchat: T3: What is genetic counseling? #patientchat https://t.co/27AHZLNZ6K
Patient Chat @patientchat
#patientchat
Abner Mason @abnermason
T3: Genetic counseling is critical—it's how patients understand this complex stuff. When patients know what a decision means for them & their families, they can take the right steps for their health. Genetic counselors help patients know what they're dealing with. #patientchat
Patient Empowerment Network @power4patients
RT @abnermason: T3: Genetic counseling is critical—it's how patients understand this complex stuff. When patients know what a decision mean…
Patient Chat @patientchat
Topic 4 (T4:) coming up..... #patientchat
Abner Mason @abnermason
@ROHHAD_warrior @patientchat Wishing you health and understanding in your journey. #patientchat
Patient Chat @patientchat
T4: How does someone get access to genetic services? #patientchat https://t.co/VqRzi6DmIL
ROHHADwarrior @ROHHAD_warrior
@patientchat T3: Genetic Counseling is being able to learn about and cope with a new medical diagnosis. #patientchat
Abner Mason @abnermason
T4 It's key to understand how patients don't get access. People from underserved communities face big barriers. SDOH challenges like lacking local services, insufficient provider-led education, insurance coverage questions. Also: ineffective messaging/engagement. #patientchat
ROHHADwarrior @ROHHAD_warrior
@patientchat T4: Someone will normally be referred by another physician to have the testing completed. They may also be taking part in a research project about their medical condition. #patientchat
Abner Mason @abnermason
[REDACTED USER] @patientchat T3: Feeling empowered at that moment is so important. #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up..... #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T4: How does someone get access to genetic services? #patientchat https://t.co/VqRzi6DmIL
Rhea Beauchesne @rhea_beauchesne
RT @abnermason: T4 It's key to understand how patients don't get access. People from underserved communities face big barriers. SDOH challe…
Abner Mason @abnermason
[REDACTED USER] T4: Of course! Social determinants of health. They're so critical to determining whether patients have access to care in the first place, the care journey, and outcomes. #patientchat
Patient Chat @patientchat
T5: What types of results can someone get from genome-wide sequencing? #patientchat https://t.co/qpfu8lKZkF
Rhea Beauchesne @rhea_beauchesne
[REDACTED USER] @patientchat T5: A positive result may also mean that you or your family may be able to connect with others who have the same condition. Peer support can be life-changing for individuals and families with the same conditions. #PatientChat
ROHHADwarrior @ROHHAD_warrior
@patientchat T5: GWS can give different results to what your phenotype(how you look) to different medical conditions. #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T5: What types of results can someone get from genome-wide sequencing? #patientchat https://t.co/qpfu8lKZkF
Patient Chat @patientchat
Topic 6 (T6:) coming up..... #patientchat
Rhea Beauchesne @rhea_beauchesne
[REDACTED USER] @patientchat T5: Research in this area is moving really quickly. An uncertain result today might not be uncertain forever. #PatientChat
Abner Mason @abnermason
[REDACTED USER] @patientchat T5: Thanks for sharing this insight. How do you, as a genetic counselor, manage this uncertainty? #patientchat
Patient Chat @patientchat
T6: What can stakeholders (e.g genetic counselors, medical geneticists, healthcare professionals, patient advocates) do to make genome-wide sequencing and genetics services more equitable and diverse? #patientchat https://t.co/GFvKwSOGFE
Rhea Beauchesne @rhea_beauchesne
@patientchat T6: Another important research area should be a focus on diversifying data sets to make interpretation of genetic testing better for non-white patients. #PatientChat #DiversityandInclusion
Abner Mason @abnermason
T6 Build relationships with people from underserved communities. Understand patients & their cultures. Coordinate messaging around that—reach patients where they are. It's hard to open the door if patients don't know the door exists or that it leads to better health. #patientchat
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@rhea_beauchesne @patientchat T6:System/service delivery challenges are important & require advocacy efforts from all stakeholders. We need to think how to reduce referral barriers, increase awareness, increase insurance coverage/funding, and service delivery to rural areas (telehealth, outreach) #PatientChat
@malkabethwendy
Don't do it unless you want your data stolen &/or used against you constantly- there's nothing else to know in this era of cyber insecurity with a global surveillance state that partners with private companies & where data "leaks" are constantly happening. #PatientChat
Patient Empowerment Network @power4patients
RT @patientchat: T6: What can stakeholders (e.g genetic counselors, medical geneticists, healthcare professionals, patient advocates) do to…
ROHHADwarrior @ROHHAD_warrior
@patientchat T6: one of biggest things is to not deny insurance ie health, life ect to those who find out they have a pre-existing diagnosis. I don’t know what term I am trying to use. #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
Abner Mason @abnermason
[REDACTED USER] @patientchat T5: This is enlightening. So glad I joined #patientchat today.
Rhea Beauchesne @rhea_beauchesne
Yes! Meeting people on their own terms and treating them as the expert of their own experiences. 🙌🏼
Abner Mason @abnermason
[REDACTED USER] T6: I love that you're calling for patient involvement. This is the right path forward, no matter what area of healthcare you're focused on. #patientchat
Inspire @InspireIsHealth
RT @patientchat: T6: What can stakeholders (e.g genetic counselors, medical geneticists, healthcare professionals, patient advocates) do to…
Ross Felix @RossFelix
RT @abnermason: T6 Build relationships with people from underserved communities. Understand patients & their cultures. Coordinate messaging…
ROHHADwarrior @ROHHAD_warrior
@patientchat *predisposed * #patientchat
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Abner Mason @abnermason
CT: I'm grateful to everyone here for sharing their experiences, expertise, and thoughts. It's clear that we can take steps here to expand access to patients from underserved communities. It's great to see passionate people working toward that. #patientchat
Abner Mason @abnermason
Thanks, everyone. It was great to meet you. Looking forward to returning for another #patientchat in the future. Enjoy your weekends!
Patient Chat @patientchat
Thank you Tasha [REDACTED USER] for joining us today and sharing your thoughts! #patientchat We are happy to have you all with us!
Rhea Beauchesne @rhea_beauchesne
#PatientChat
Abner Mason @abnermason
[REDACTED USER] Same to you! #patientchat
Patient Chat @patientchat
Join us for a “Ask Me Anything” Empowered #patientchat with Marie Ennis O'Connor (@JBBC) on Friday, March 19th at @ 10 AM PT| 1 PM ET! https://t.co/Z6wU3yW9cS https://t.co/FHE9JUn7oy
Beth Steckler (she/her) @purplemamabear
RT @patientchat: Join us for a “Ask Me Anything” Empowered #patientchat with Marie Ennis O'Connor (@JBBC) on Friday, March 19th at @ 10 AM…
Rhea Beauchesne @rhea_beauchesne
Thanks @PatientChat for hosting this enlightening event! Find [REDACTED USER] on Twitter, Instagram and Facebook to keep the conversation going #PatientChat
#patientchat content from Twitter.