#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| 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 😊 |
 | GenCOUNSEL @GenCOUNSEL_CA @patientchat Hello! I’m @TashaWainstein representing researchers and experts at @GenCOUNSEL_CA, a Canadian initiative aiming to improve access to genetic counselling for genome-wide sequencing. My colleagues joining today: @KennedyBorle, @NicolaK39, @alivia_dey, @rhea_beauchesne. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat @TashaWainstein @kennedyborle @NicolaK39 @alivia_dey @rhea_beauchesne The @GenCOUNSEL_CA project’s aims boil down to four P’s: Profession; Programs; Practice; & Policy. This framework helps us stay focused on improving genetic counselling and increasing equitable access while always keeping families at the centre of everything we do. #PatientChat https://t.co/hOilqFfzee |
 | 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. |
 | ROHHADwarrior @ROHHAD_warrior @patientchat Good afternoon, I’m Sarah with a rare Disease called ROHHAD. It is actually a syndrome. #patientchat |
 | Kennedy Borle @kennedyborle @patientchat Hello! I am a research genetic counsellor working mainly on the Profession aim of the @GenCOUNSEL_CA project. Excited to be here with you all today! #PatientChat |
| Abner Mason @abnermason @GenCOUNSEL_CA @patientchat @TashaWainstein @kennedyborle @NicolaK39 @alivia_dey @rhea_beauchesne Great to meet you, Tasha. Seems like you're doing some great work. #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Rhea Beauchesne @rhea_beauchesne @patientchat Hi! I’m a research assistant with @GenCOUNSEL_CA, working mainly on the Practice aim. Let’s get started! #PatientChat |
 | Alivia Dey, PhD | অলিভিয়া দে @alivia_dey Hello everyone. My name is Alivia (@alivia_dey), Project Manager for @GenCOUNSEL_CA project. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat @TashaWainstein @kennedyborle @NicolaK39 @alivia_dey @rhea_beauchesne You can find out more information about @GenCOUNSEL_CA from our website: https://t.co/K7xI2xgMJy. Also check out our instagram for some outstanding content about genetics and our research: https://t.co/CaSK4GJQZN #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: 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 |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T1: Genome-wide sequencing is a broad type of genetic test that can help find genetic causes of a health condition. Results may impact health decisions, be important for other family members, and lead to unexpected emotions. More info here: https://t.co/ovJjPYVuqi #PatientChat |
 | Diverse Health Hub @DHealthhub RT @patientchat: Today's #patientchat topic is Genome-Wide Sequencing: 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: T1: What is genome-wide sequencing? #patientchat https://t.co/6qrkhIUxSh |
| Patient Empowerment Network @power4patients RT @GenCOUNSEL_CA: @patientchat T1: @patientchat T1: Genome-wide sequencing is a broad type of genetic test that can help find genetic causes of a health condition. Results may impact health decisions, be important for other family members, and lead to unexpected emotions. More info here: https://t.co/ovJjPYVuqi #PatientChat |
| Abner Mason @abnermason @GenCOUNSEL_CA @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 |
| Alivia Dey, PhD | অলিভিয়া দে @alivia_dey @patientchat T1: A person’s DNA contains letters that spell out the instructions for the body to function. Genetic testing looks at the letters to see if there are any letters that are different than expected. Watch this video for an intro to #Genomics: https://t.co/oyxUeIDeQm #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 |
| Kennedy Borle @kennedyborle @GenCOUNSEL_CA @patientchat T1: It's important to note that everyone has spelling changes in their DNA! This makes us different from one and other. Genetic testing can be used to find out if any differences are linked to a health condition. Read about these changes: https://t.co/6dV1H01K0G #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 |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T2: GWS may be used when someone has a complex medical condition and there is not yet a known genetic cause identified. Sometimes other types of genetic testing are used first to try to find a genetic cause #PatientChat |
| Patient Chat @patientchat #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: Why would someone have genome-wide sequencing? #patientchat https://t.co/l0lSA8z1gi |
 | Patient Safety 🇨🇦 @pttopt @patientchat What is the average price of genome wide sequencing ? It used to be unaffordable for the average person #PatientChat |
| 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 |
| Patient Chat @patientchat RT @pttopt: @patientchat What is the average price of genome wide sequencing ? It used to be unaffordable for the average person #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 @GenCOUNSEL_CA @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. 😂 |
| GenCOUNSEL @GenCOUNSEL_CA @abnermason @patientchat Thanks! There is always more work to be done; that's why we think it is so important to partner with patients and invest time in good #SciComm #PatientChat |
| Patient Chat @patientchat T3: What is genetic counseling? #patientchat https://t.co/27AHZLNZ6K |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What is genetic counseling? #patientchat https://t.co/27AHZLNZ6K |
| Patient Chat @patientchat #patientchat |
| GenCOUNSEL @GenCOUNSEL_CA @_Nataliea @patientchat T2: There are SO MANY GENES! 😅 And we still have a lot of work to do to understand what they all do, how they interact with one another, and the environment. It's great that you are involved in this kind of research. #PatientChat |
| Kennedy Borle @kennedyborle @pttopt @patientchat There are some cases where this could be covered by insurance or funded by the public healthcare system but this would vary by location, clinical factors, insurance etc #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T3: Genetic counselling is the process of helping people adapt to and understand the medical and emotional impacts of a genetic condition, and the impact that it can have on family members. #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: 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 |
| Alivia Dey, PhD | অলিভিয়া দে @alivia_dey @patientchat T3: Genetic counselling can help people understand the pros and cons to genetic testing, and if choosing to have testing is aligned with their values. #PatientChat |
| Patient Chat @patientchat Topic 4 (T4:) coming up..... #patientchat |
| GenCOUNSEL @GenCOUNSEL_CA RT @abnermason: T3: 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 |
| 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 |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T4: Typically someone would need a referral from a health care provider in order to access clinical genetic services, although some clinics accept self-referrals. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @ROHHAD_warrior: @patientchat T3: @patientchat T3: Genetic Counseling is being able to learn about and cope with a new medical diagnosis. #patientchat |
| GenCOUNSEL @GenCOUNSEL_CA RT @alivia_dey: @patientchat T3: @patientchat T3: Genetic counselling can help people understand the pros and cons to genetic testing, and if choosing to have testing is aligned with their values. #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 |
| Kennedy Borle @kennedyborle @patientchat T3: Genetic counseling can help people find meaning in their genetic diagnosis, it can help patients and families cope and feel more empowered #patientchat |
| GenCOUNSEL @GenCOUNSEL_CA RT @kennedyborle: @patientchat T3: @patientchat T3: Genetic counseling can help people find meaning in their genetic diagnosis, it can help patients and families cope and feel more empowered #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 @kennedyborle @patientchat T3: Feeling empowered at that moment is so important. #patientchat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T4: Genetic services exist on all continents, but they may not always be easy to locate. Here’s a list of relevant websites from a recent publication which can be accessed here: https://t.co/A6aOIYmjYC #PatientChat https://t.co/U6vCNamkoz |
| Patient Empowerment Network @power4patients RT @GenCOUNSEL_CA: @patientchat T4: @patientchat T4: Genetic services exist on all continents, but they may not always be easy to locate. Here’s a list of relevant websites from a recent publication which can be accessed here: https://t.co/A6aOIYmjYC #PatientChat https://t.co/U6vCNamkoz |
| Patient Chat @patientchat Topic 5 (T5:) coming up..... #patientchat |
| Alivia Dey, PhD | অলিভিয়া দে @alivia_dey @patientchat T4: If you are in the USA: https://t.co/277ZVxB0RG (@GeneticCouns) In Canada: https://t.co/tKud9u4oBP (@CAGC_ACCG). If you’re worried about something in your medical or family history, talk to your doctor about a referral #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @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 |
| GenCOUNSEL @GenCOUNSEL_CA RT @alivia_dey: @patientchat T4: If you are in the USA: https://t.co/277ZVxB0RG (@GeneticCouns) In Canada: @patientchat T4: If you are in the USA: https://t.co/277ZVxB0RG (@GeneticCouns) In Canada: https://t.co/tKud9u4oBP (@CAGC_ACCG). If you’re worried about something in your medical or family history, talk to your doctor about a referral #PatientChat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: 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 challenges like lacking local services, insufficient provider-led education, insurance coverage questions. Also: ineffective messaging/engagement. #patientchat |
| Patient Chat @patientchat RT @alivia_dey: @patientchat T4: If you are in the USA: https://t.co/277ZVxB0RG (@GeneticCouns) In Canada: @patientchat T4: If you are in the USA: https://t.co/277ZVxB0RG (@GeneticCouns) In Canada: https://t.co/tKud9u4oBP (@CAGC_ACCG). If you’re worried about something in your medical or family history, talk to your doctor about a referral #PatientChat |
| Abner Mason @abnermason @kennedyborle 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 RT @GenCOUNSEL_CA: @patientchat T4: @patientchat T4: Genetic services exist on all continents, but they may not always be easy to locate. Here’s a list of relevant websites from a recent publication which can be accessed here: https://t.co/A6aOIYmjYC #PatientChat https://t.co/U6vCNamkoz |
| Patient Chat @patientchat T5: What types of results can someone get from genome-wide sequencing? #patientchat https://t.co/qpfu8lKZkF |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat This infographic summarizes the types of results possible from GWS. Results are not always straightforward and they should be discussed with a knowledgeable healthcare provider. #PatientChat https://t.co/5QGBjSNNRr |
| Patient Chat @patientchat RT @GenCOUNSEL_CA: @patientchat This infographic summarizes the types of results possible from GWS. Results are not always straightforward and they should be discussed with a knowledgeable healthcare provider. #PatientChat https://t.co/5QGBjSNNRr |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T5: A positive result means that a genetic change was found that could (partially or completely) explain the condition that you or your family member has. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @abnermason: @kennedyborle T4: @kennedyborle 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 |
| Rhea Beauchesne @rhea_beauchesne @GenCOUNSEL_CA @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: T5: What types of results can someone get from genome-wide sequencing? #patientchat https://t.co/qpfu8lKZkF |
| GenCOUNSEL @GenCOUNSEL_CA RT @rhea_beauchesne: @GenCOUNSEL_CA @patientchat T5: @GenCOUNSEL_CA @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 |
| Kennedy Borle @kennedyborle @patientchat T4: Genetic services may be provided in a dedicated genetics clinic by genetic counsellors (https://t.co/wEN0vSvzmp) and medical geneticists, however there are more specialty clinics that are directly integrating genetic services into their clinics to increase access #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T5: An uncertain result means a genetic change was found, but there is not enough information to be able to say for sure if it is related to the condition in your family. More information in the future could help to clarify this result better. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T5: A secondary finding means a change was found in a gene that causes a different condition than the one seen in your family. This result is important for your health but is unrelated to the reason for doing genetic testing in the first place #PatientChat |
| Patient Chat @patientchat Topic 6 (T6:) coming up..... #patientchat |
| GenCOUNSEL @GenCOUNSEL_CA RT @kennedyborle: @patientchat T4: @patientchat T4: Genetic services may be provided in a dedicated genetics clinic by genetic counsellors (https://t.co/wEN0vSvzmp) and medical geneticists, however there are more specialty clinics that are directly integrating genetic services into their clinics to increase access #PatientChat |
| Kennedy Borle @kennedyborle @patientchat T5: The ways results can impact treatment and management for patients are not always straight forward! A positive result for example, can result in additional treatment options but because many conditions are #Rare or #UltraRare, there may not be treatments yet #PatientChat |
| Alivia Dey, PhD | অলিভিয়া দে @alivia_dey @patientchat T5: A negative result means there were no genetic changes found that could explain your condition. This could mean the main cause of your condition is not genetic, or that our technology isn’t sophisticated enough to find the genetic cause. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @alivia_dey: @patientchat T5: @patientchat T5: A negative result means there were no genetic changes found that could explain your condition. This could mean the main cause of your condition is not genetic, or that our technology isn’t sophisticated enough to find the genetic cause. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @kennedyborle: @patientchat T5: @patientchat T5: The ways results can impact treatment and management for patients are not always straight forward! A positive result for example, can result in additional treatment options but because many conditions are #Rare or #UltraRare, there may not be treatments yet #PatientChat |
| Kennedy Borle @kennedyborle @GenCOUNSEL_CA @patientchat T5: Uncertain results can be really frustrating to receive. If you have this type of result, it’s important to keep in touch with your genetics providers to see if there has been any new research that changes the interpretation of these results. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @kennedyborle: @GenCOUNSEL_CA @patientchat T5: @GenCOUNSEL_CA @patientchat T5: Uncertain results can be really frustrating to receive. If you have this type of result, it’s important to keep in touch with your genetics providers to see if there has been any new research that changes the interpretation of these results. #PatientChat |
| Alivia Dey, PhD | অলিভিয়া দে @alivia_dey @patientchat T5:Negative results are frustrating, especially for those who've spent yrs searching. Research for #RareDisease patients is ongoing-a negative may not mean the end of the road. Staying in touch with genetic services so new developments can be assessed is a good idea. #PatientChat |
| Kennedy Borle @kennedyborle @abnermason T4: Thanks for clearing that up! I completely agree that they play a huge role in access and outcomes. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @alivia_dey: @patientchat T5:Negative results are frustrating, especially for those who've spent yrs searching. Research for #RareDisease patients is ongoing-a negative may not mean the end of the road. Staying in touch with genetic services so new developments can be assessed is a good idea. #PatientChat |
| Rhea Beauchesne @rhea_beauchesne @GenCOUNSEL_CA @patientchat T5: Research in this area is moving really quickly. An uncertain result today might not be uncertain forever. #PatientChat |
| Abner Mason @abnermason @kennedyborle @patientchat T5: Thanks for sharing this insight. How do you, as a genetic counselor, manage this uncertainty? #patientchat |
| Alivia Dey, PhD | অলিভিয়া দে @alivia_dey @patientchat T5: While in some cases only one person in the family may have GWS testing, it is important to remember that the results can impact many relatives. A genetic counsellor can help you sort through who would benefit from this information and how best to tell them. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @rhea_beauchesne: @GenCOUNSEL_CA @patientchat T5: @GenCOUNSEL_CA @patientchat T5: Research in this area is moving really quickly. An uncertain result today might not be uncertain forever. #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 |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T6: Making sure that everyone who could benefit from GWS is able to access it, is something that requires all hands on deck! We have some suggestions I’ll describe here, but would love to hear from everyone else how we can do more. #DEI #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat T6: Genetic counsellors and medical geneticists should focus on increasing diversity in the workforce, and work towards providing services in languages other than English.Our workforce should be as diverse and inclusive as the patients we are serving. #DEI #PatientChat |
| 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 |
| GenCOUNSEL @GenCOUNSEL_CA RT @alivia_dey: @patientchat T5: @patientchat T5: While in some cases only one person in the family may have GWS testing, it is important to remember that the results can impact many relatives. A genetic counsellor can help you sort through who would benefit from this information and how best to tell them. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @rhea_beauchesne: @patientchat T6: @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 |
| Alivia Dey, PhD | অলিভিয়া দে @alivia_dey @patientchat T6: Currently, there are only 450 genetic counsellors in Canada. Many other places across the globe don’t have enough genetic healthcare providers. We have to increase the capacity of the workforce, both in terms of numbers and their ability to provide services #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA 👇👇👇👇 #PatientChat |
| Patient Empowerment Network @power4patients RT @patientchat: T6: 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 |
| Kennedy Borle @kennedyborle @abnermason @patientchat T5: I think that discussing uncertainty needs to happen before someone chooses to have testing, so that patients can be prepared for this as a possibility. With uncertain results, I think it's important to discuss and validate the emotions that come up. #PatientChat |
| 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 |
| GenCOUNSEL @GenCOUNSEL_CA @abnermason T6:We'd love to partner with #PatientAdvocates who can help with awareness re:benefits of genetic services &teach people how to advocate for referrals if they’re having difficulties.Patient involvement in research design is also something that could make a difference #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 @kennedyborle @patientchat T5: This is enlightening. So glad I joined #patientchat today. |
| GenCOUNSEL @GenCOUNSEL_CA RT @alivia_dey: @patientchat T6: @patientchat T6: Currently, there are only 450 genetic counsellors in Canada. Many other places across the globe don’t have enough genetic healthcare providers. We have to increase the capacity of the workforce, both in terms of numbers and their ability to provide services #PatientChat |
| Abner Mason @abnermason RT @GenCOUNSEL_CA: @abnermason T6:We'd love to partner with #PatientAdvocates who can help with awareness re:benefits of genetic services &teach people how to advocate for referrals if they’re having difficulties.Patient involvement in research design is also something that could make a difference #PatientChat |
| Rhea Beauchesne @rhea_beauchesne Yes! Meeting people on their own terms and treating them as the expert of their own experiences. 🙌🏼 |
| Kennedy Borle @kennedyborle @abnermason @patientchat T5: From a practical stand point, connecting patients and families to research studies, other families in similar situations, or support groups can be helpful when they're available. Also creating a plan for how to follow up in the future. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA @patientchat CT: Genome-wide sequencing is an important technology that can provide useful information about someone’s health. Results may lead to complex healthcare choices and emotions. Genetic counsellors can help navigate these challenges. #PatientChat |
| Abner Mason @abnermason @GenCOUNSEL_CA 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: 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 |
 | (((Ross Felix))) @RossFelix RT @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 |
| ROHHADwarrior @ROHHAD_warrior @patientchat *predisposed * #patientchat |
| Kennedy Borle @kennedyborle @patientchat T6: Healthcare providers should keep up to date on referral guidelines for genetic services, take detailed family histories with all patients and refer to genetics services as necessary #PatientChat |
| Patient Chat @patientchat RT @GenCOUNSEL_CA: @abnermason T6:We'd love to partner with #PatientAdvocates who can help with awareness re:benefits of genetic services &teach people how to advocate for referrals if they’re having difficulties.Patient involvement in research design is also something that could make a difference #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @kennedyborle: @patientchat T6: @patientchat T6: Healthcare providers should keep up to date on referral guidelines for genetic services, take detailed family histories with all patients and refer to genetics services as necessary #PatientChat |
| Kennedy Borle @kennedyborle @ROHHAD_warrior @patientchat T6: Thanks for bringing that up, that is a big consideration. Most countries have legal protections in place to protect against genetic discrimination. These laws vary by country, and can be discussed with healthcare providers if someone wanted to know more! #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @kennedyborle: @ROHHAD_warrior @patientchat T6: @ROHHAD_warrior @patientchat T6: Thanks for bringing that up, that is a big consideration. Most countries have legal protections in place to protect against genetic discrimination. These laws vary by country, and can be discussed with healthcare providers if someone wanted to know more! #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 |
| GenCOUNSEL @GenCOUNSEL_CA @NicolaK39 @patientchat CT: @GenCOUNSEL_CA project (and many others!) are doing some of this #RareResearch and trying to find the best ways to increase access to services. Thank you @patientchat and all of you for engaging in this important conversation! #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA CT: To find out more about our project: follow us on Twitter @GenCOUNSEL_CA, check out our website https://t.co/K7xI2xgMJy and our Instagram https://t.co/CaSK4GJQZN #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 @GenCOUNSEL_CA for joining us today and sharing your thoughts! #patientchat We are happy to have you all with us! |
| GenCOUNSEL @GenCOUNSEL_CA @abnermason Thank you for your insights! It was great chatting with you today. #PatientChat |
| Rhea Beauchesne @rhea_beauchesne #PatientChat |
| Kennedy Borle @kennedyborle @patientchat CT: I believe that GWS should be accompanied by genetic counseling to ensure that patients and families are informed about pros/cons and choosing the options that are aligned with their values. More work needs to be done to increase access to genetic services! #PatientChat |
| Abner Mason @abnermason @GenCOUNSEL_CA 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 |
| GenCOUNSEL @GenCOUNSEL_CA @abnermason This is something that is very important to @GenCOUNSEL_CA - we are always amazed and grateful to the #PatientAdvocates who work with us to improve healthcare. #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @kennedyborle: @patientchat CT: @patientchat CT: I believe that GWS should be accompanied by genetic counseling to ensure that patients and families are informed about pros/cons and choosing the options that are aligned with their values. More work needs to be done to increase access to genetic services! #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @patientchat: Thank you Tasha @GenCOUNSEL_CA for joining us today and sharing your thoughts! #patientchat We are happy to have you all with us! |
 | 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 PT| 1 PM ET! https://t.co/Z6wU3yW9cS https://t.co/FHE9JUn7oy |
| Rhea Beauchesne @rhea_beauchesne Thanks @PatientChat for hosting this enlightening event! Find @GenCOUNSEL_CA on Twitter, Instagram and Facebook to keep the conversation going #PatientChat |
| GenCOUNSEL @GenCOUNSEL_CA RT @rhea_beauchesne: Thanks @PatientChat for hosting this enlightening event! Find @GenCOUNSEL_CA on Twitter, Instagram and Facebook to keep the conversation going #PatientChat |
 | Tasha Wainstein (she/her) 🇿🇦🇨🇦 @TashaWainstein RT @GenCOUNSEL_CA: @patientchat @TashaWainstein @kennedyborle @NicolaK39 @alivia_dey @rhea_beauchesne You can find out more information about @GenCOUNSEL_CA from our website: https://t.co/K7xI2xgMJy. Also check out our instagram for some outstanding content about genetics and our research: https://t.co/CaSK4GJQZN #PatientChat |
#patientchat content from Twitter.