#GynCSM Transcript
Healthcare social media transcript of the #GynCSM hashtag.
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See #GynCSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | GYN Cancer | #GYNCSM @gyncsm Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers. |
| GYN Cancer | #GYNCSM @gyncsm Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm |
 | Dee Sparacio @womenofteal RT @gyncsm: Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers. |
| Dee Sparacio @womenofteal RT @gyncsm: New to tweetchats? Read tips from #gyncsm co-moderator @womenofteal https://t.co/m5bAfRjHVr See you shortly! |
| Dee Sparacio @womenofteal RT @gyncsm: Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm |
 | Christina Lizaso @btrfly12 Christina Lizaso here – passionate re: community engagement and cancer care. I’ll be moderating as @gyncsm today. #gyncsm |
| Dee Sparacio @womenofteal Dee here! Dx with #ovca Stage3B 2005, recurrence 2008, Ovarian Cancer research advocate, blogger, co-Author of “100 Questions and Answers about Ovarian cancer” & co-moderator #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm If you prefer to “listen only” during the chat, we'd love for you to tweet "#gyncsm" when you join - just to let us know you are here. Please continue intro's and welcomes - we'll start in w/ the "ground rules" :) and tips! |
 | Sarah Temkin @temkins RT @gyncsm: Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: If you prefer to “listen only” during the chat, we'd love for you to tweet "#gyncsm" when you join - just to let us know you are here. Please continue intro's and welcomes - we'll start in w/ the "ground rules" :) and tips! |
| GYN Cancer | #GYNCSM @gyncsm The #gyncsm chat promotes community in a public forum. Chats are an open discussion and all are welcome to share from their experiences and perspectives. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| GYN Cancer | #GYNCSM @gyncsm #gyncsm is not a forum for individual medical advice. Resources and referrals and provided solely for information and convenience. |
| Dee Sparacio @womenofteal RT @gyncsm: The #gyncsm chat promotes community in a public forum. Chats are an open discussion and all are welcome to share from their experiences and perspectives. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| Dee Sparacio @womenofteal RT @gyncsm: #gyncsm is not a forum for individual medical advice. Resources and referrals and provided solely for information and convenience. |
 | IamCervivor @IamCervivor Hey Everyone! Morgan here - I'm a metastatic and recurrent #CervicalCancer survivor, an #MSW, and the Community Engagement Liaison for #Cervivor. Happy to be here! #GYNCSM |
| Dee Sparacio @womenofteal #gyncsm tagged resources and referrals are not a substitute for speaking with your doctor who understands your needs and history. |
 | Chrysalis📚✌🏾💋💃🏾 🎷🌻 @JustStop0691 RT @gyncsm: The #gyncsm chat promotes community in a public forum. Chats are an open discussion and all are welcome to share from their experiences and perspectives. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| GYN Cancer | #GYNCSM @gyncsm Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include it in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. |
| Dee Sparacio @womenofteal @IamCervivor Hi Morgan - So happy you could join us! #gyncsm |
| Dee Sparacio @womenofteal Remember - Twitter is an open social network and posts are public. Use a Direct Message to exchange email addresses/personal information. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include it in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. |
 | NPAIHB @NPAIHB Native Americans are more likely to get certain cancers compared to non-Hispanic White people. AI/AN women had higher rates of liver, stomach, kidney, colorectal, and cervical cancer. Regular health screenings are essential for early detection. #gyncsm #Indigenous #healthcare https://t.co/BiiB1nDlsJ |
| GYN Cancer | #GYNCSM @gyncsm Tonight on #gyncsm we’ll be discussing "Advocacy for Yourself and Others". You can find the six Topic Questions we’ll cover on today’s chat on our #gyncsm blog: https://t.co/Y69KLST2x1 |
| Dee Sparacio @womenofteal Thank you to all who have tweeted valuable information to our community during the past month using the #gyncsm hashtag and those who helped promote tonight's chat. |
 | Mimi @Mimiinmendon @gyncsm #gyncsm |
| IamCervivor @IamCervivor RT @gyncsm: Tonight on #gyncsm we’ll be discussing "Advocacy for Yourself and Others". You can find the six Topic Questions we’ll cover on today’s chat on our #gyncsm blog: https://t.co/Y69KLST2x1 |
| Christina Lizaso @btrfly12 RT @gyncsm: Tonight on #gyncsm we’ll be discussing "Advocacy for Yourself and Others". You can find the six Topic Questions we’ll cover on today’s chat on our #gyncsm blog: https://t.co/Y69KLST2x1 |
| Dee Sparacio @womenofteal #gyncsm let’s take a moment to remember a very special advocate #DiceyScroggins She advised and inspired so many of us and helped raise patient advocacy to a new level especially for Black women. She will be missed. #RestinPeace #RememberingDicey |
| GYN Cancer | #GYNCSM @gyncsm RT @womenofteal: #gyncsm let’s take a moment to remember a very special advocate #DiceyScroggins She advised and inspired so many of us and helped raise patient advocacy to a new level especially for Black women. She will be missed. #RestinPeace #RememberingDicey |
| Dee Sparacio @womenofteal RT @gyncsm: Tonight on #gyncsm we’ll be discussing "Advocacy for Yourself and Others". You can find the six Topic Questions we’ll cover on today’s chat on our #gyncsm blog: https://t.co/Y69KLST2x1 |
| IamCervivor @IamCervivor RT @womenofteal: #gyncsm let’s take a moment to remember a very special advocate #DiceyScroggins She advised and inspired so many of us and helped raise patient advocacy to a new level especially for Black women. She will be missed. #RestinPeace #RememberingDicey |
| Sarah Temkin @temkins RT @womenofteal: #gyncsm let’s take a moment to remember a very special advocate #DiceyScroggins She advised and inspired so many of us and helped raise patient advocacy to a new level especially for Black women. She will be missed. #RestinPeace #RememberingDicey |
 | Tristan @strongtlb1 @gyncsm #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: at the front of your comment or answer. We will also end our chat with a chance to share TIL: thoughts standing for “Today I Learned”. Here comes Topic 1 (T1:)... #gyncsm |
| Dee Sparacio @womenofteal @strongtlb1 @gyncsm Hi Tristan. Glad you could join us! #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T1: What are some of the different types of healthcare advocacy? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: at the front of your comment or answer. We will also end our chat with a chance to share TIL: thoughts standing for “Today I Learned”. Here comes Topic 1 (T1:)... #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T1: T1: What are some of the different types of healthcare advocacy? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T1: T1: What are some of the different types of healthcare advocacy? #gyncsm |
| IamCervivor @IamCervivor T1.1: Healthcare advocacy can involve the full care team or individuals like social workers and nurse navigators. They can help with access to care, make informed healthcare decisions, and all of the insurance tasks that come with treatment. #GYNCSM |
| Sarah Temkin @temkins RT @gyncsm: T1: T1: What are some of the different types of healthcare advocacy? #gyncsm |
| IamCervivor @IamCervivor T1.2: Patient advocates can build partnerships with their care team (like @pattiny1) to provide screen and treat events. They can also provide resources about support groups like our Creating Connections to meet others in real-time. No one should ever feel alone. #GYNCSM https://t.co/2eyLQYLXN7 |
| Christina Lizaso @btrfly12 T1: Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up. #gyncsm |
| Christina Lizaso @btrfly12 RT @IamCervivor: T1.2: T1.2: Patient advocates can build partnerships with their care team (like @pattiny1) to provide screen and treat events. They can also provide resources about support groups like our Creating Connections to meet others in real-time. No one should ever feel alone. #GYNCSM https://t.co/2eyLQYLXN7 |
| Christina Lizaso @btrfly12 RT @IamCervivor: T1.1: T1.1: Healthcare advocacy can involve the full care team or individuals like social workers and nurse navigators. They can help with access to care, make informed healthcare decisions, and all of the insurance tasks that come with treatment. #GYNCSM |
| Dee Sparacio @womenofteal RT @IamCervivor: T1.1: T1.1: Healthcare advocacy can involve the full care team or individuals like social workers and nurse navigators. They can help with access to care, make informed healthcare decisions, and all of the insurance tasks that come with treatment. #GYNCSM |
| Dee Sparacio @womenofteal RT @IamCervivor: T1.2: T1.2: Patient advocates can build partnerships with their care team (like @pattiny1) to provide screen and treat events. They can also provide resources about support groups like our Creating Connections to meet others in real-time. No one should ever feel alone. #GYNCSM https://t.co/2eyLQYLXN7 |
| Dee Sparacio @womenofteal RT @btrfly12: T1: T1: Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up. #gyncsm |
| Dee Sparacio @womenofteal T1 My list includes Advocating for yourself , advocating for increasing funding of research, legislative and policy advocacy, advocating for patient engagement in clinical trial access, #gyncsm |
| IamCervivor @IamCervivor RT @btrfly12: T1: T1: Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up. #gyncsm |
| IamCervivor @IamCervivor RT @womenofteal: T1 My list includes Advocating for yourself , advocating for increasing funding of research, legislative and policy advocacy, advocating for patient engagement in clinical trial access, #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: T1 My list includes Advocating for yourself , advocating for increasing funding of research, legislative and policy advocacy, advocating for patient engagement in clinical trial access, #gyncsm |
 | Nita Lee @NitaKarnikLee @gyncsm Hi!very important topic! I am a gyn oncologist @UCCancerCenter very interested as usual to learn from fantastic advocates #gyncsm re needs or gaps, resources; interested in Formalizing mechanisms to integrate skilled patient advocates and build capacity among new advocates |
| GYN Cancer | #GYNCSM @gyncsm @strongtlb1 @womenofteal :) don't forget to include #gyncsm on the tweet you want all chat participants to see - glad you are here and appreciate so much your advocacy! |
| Dee Sparacio @womenofteal RT @NitaKarnikLee: @gyncsm Hi!very important topic! I am a gyn oncologist @UCCancerCenter very interested as usual to learn from fantastic advocates #gyncsm re needs or gaps, resources; interested in Formalizing mechanisms to integrate skilled patient advocates and build capacity among new advocates |
| GYN Cancer | #GYNCSM @gyncsm T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare? #gyncsm |
| IamCervivor @IamCervivor RT @NitaKarnikLee: @gyncsm Hi!very important topic! I am a gyn oncologist @UCCancerCenter very interested as usual to learn from fantastic advocates #gyncsm re needs or gaps, resources; interested in Formalizing mechanisms to integrate skilled patient advocates and build capacity among new advocates |
| Dee Sparacio @womenofteal RT @gyncsm: @strongtlb1 @womenofteal :) don't forget to include #gyncsm on the tweet you want all chat participants to see - glad you are here and appreciate so much your advocacy! |
| Dee Sparacio @womenofteal RT @gyncsm: T2a: T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare? #gyncsm |
| Christina Lizaso @btrfly12 T2: Dee and I have participated in @SaludAmerica @patientchat and other tweet chats to spread education about gynecologic cancers. We also participate in awareness days/month activities online - like #Dazzle4Rare that is happening this week. #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T2a: T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare? #gyncsm |
| Tristan @strongtlb1 @gyncsm @womenofteal Thank you! Where's that edit button when we need it 😅 #gyncsm |
| IamCervivor @IamCervivor T2a: We share resources to help patients become more educated on their options, we share our personal stories to help create decisions and changes in policy, and we partner with community leaders to make a difference in our local communities. #GYNCSM https://t.co/TL8RgDac4G |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: Dee and I have participated in @SaludAmerica @patientchat and other tweet chats to spread education about gynecologic cancers. We also participate in awareness days/month activities online - like #Dazzle4Rare that is happening this week. #gyncsm |
 | Carol Brown @drcarolbrownMSK RT @womenofteal: #gyncsm let’s take a moment to remember a very special advocate #DiceyScroggins She advised and inspired so many of us and helped raise patient advocacy to a new level especially for Black women. She will be missed. #RestinPeace #RememberingDicey |
| Christina Lizaso @btrfly12 T2: Years back, I advocated when I "fired" my daughter's pediatrician for not addressing her directly and only speaking to me and not hearing her questions. #gyncsm |
| Christina Lizaso @btrfly12 RT @IamCervivor: T2a: T2a: We share resources to help patients become more educated on their options, we share our personal stories to help create decisions and changes in policy, and we partner with community leaders to make a difference in our local communities. #GYNCSM https://t.co/TL8RgDac4G |
| Dee Sparacio @womenofteal @btrfly12 @SaludAmerica @patientchat T2A And we share important research shared at oncology meetings with our community #gyncsm |
| Dee Sparacio @womenofteal RT @IamCervivor: T2a: T2a: We share resources to help patients become more educated on their options, we share our personal stories to help create decisions and changes in policy, and we partner with community leaders to make a difference in our local communities. #GYNCSM https://t.co/TL8RgDac4G |
| NPAIHB @NPAIHB T1: Being aware of the community being served which means considering any language or cultural considerations. Also, providing a engaging framework that reaches out to those most vulnerable. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: Years back, I advocated when I "fired" my daughter's pediatrician for not addressing her directly and only speaking to me and not hearing her questions. #gyncsm |
| IamCervivor @IamCervivor RT @NPAIHB: T1: T1: Being aware of the community being served which means considering any language or cultural considerations. Also, providing a engaging framework that reaches out to those most vulnerable. #gyncsm |
| Dee Sparacio @womenofteal RT @NPAIHB: T1: T1: Being aware of the community being served which means considering any language or cultural considerations. Also, providing a engaging framework that reaches out to those most vulnerable. #gyncsm |
| Christina Lizaso @btrfly12 T2: My favorite caregiver advocate moment was using the phrase "Then let's reach out to the Admin on Call", and a non-available roll-away bed magically appearing. #gyncsm |
| Nita Lee @NitaKarnikLee @IamCervivor #gyncsm At an individual patient level collecting these resources that are available and sharing them with our patients is very important to have on hand! This can be an important link for patients To have both print or online depending on what patients want! |
| Christina Lizaso @btrfly12 RT @NPAIHB: T1: T1: Being aware of the community being served which means considering any language or cultural considerations. Also, providing a engaging framework that reaches out to those most vulnerable. #gyncsm |
| Christina Lizaso @btrfly12 RT @NitaKarnikLee: @IamCervivor #gyncsm At an individual patient level collecting these resources that are available and sharing them with our patients is very important to have on hand! This can be an important link for patients To have both print or online depending on what patients want! |
| Dee Sparacio @womenofteal RT @NitaKarnikLee: @IamCervivor #gyncsm At an individual patient level collecting these resources that are available and sharing them with our patients is very important to have on hand! This can be an important link for patients To have both print or online depending on what patients want! |
| IamCervivor @IamCervivor RT @NitaKarnikLee: @IamCervivor #gyncsm At an individual patient level collecting these resources that are available and sharing them with our patients is very important to have on hand! This can be an important link for patients To have both print or online depending on what patients want! |
| Sarah Temkin @temkins RT @btrfly12: T1: T1: Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T2b: If comfortable sharing - what prompted you to "put on your advocacy hat"? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T2b: T2b: If comfortable sharing - what prompted you to "put on your advocacy hat"? #gyncsm |
| Sarah Temkin @temkins RT @gyncsm: T2a: T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare? #gyncsm |
| Christina Lizaso @btrfly12 T2: I didn't really get active in healthcare advocacy until I spent time working at a cancer nonprofit and after working with those patients and families can't image not staying active in some way. #gyncsm |
| IamCervivor @IamCervivor T2b: I was 24 and faced a lot of challenges throughout treatment. The only other person I knew who experienced #CervicalCancer passed away at 27. I didn't know about Cervivor. I had a support system but did not know anyone with my cancer. I wanted to change that. #GYNCSM https://t.co/4sOcp0lHMP |
| Mimi @Mimiinmendon @gyncsm T2a: After request from PCP met with his residents to talk about the effects of Cancer/treatment from a patient perspective. #gyncsm |
| Sarah Temkin @temkins A2b: How could anyone know a patient with gynecologic cancer and not love them and advocate for them? ##gyncsm |
| IamCervivor @IamCervivor RT @btrfly12: T2: T2: I didn't really get active in healthcare advocacy until I spent time working at a cancer nonprofit and after working with those patients and families can't image not staying active in some way. #gyncsm |
| Christina Lizaso @btrfly12 RT @IamCervivor: T2b: T2b: I was 24 and faced a lot of challenges throughout treatment. The only other person I knew who experienced #CervicalCancer passed away at 27. I didn't know about Cervivor. I had a support system but did not know anyone with my cancer. I wanted to change that. #GYNCSM https://t.co/4sOcp0lHMP |
| IamCervivor @IamCervivor RT @temkins: A2b: A2b: How could anyone know a patient with gynecologic cancer and not love them and advocate for them? ##gyncsm |
| Sarah Temkin @temkins And I guess the corollary to that is not advocating means you don't know someone with a gyn cancer. #gyncsm |
 | Sevtap Savas, PhD @savaslab RT @IamCervivor: T2b: T2b: I was 24 and faced a lot of challenges throughout treatment. The only other person I knew who experienced #CervicalCancer passed away at 27. I didn't know about Cervivor. I had a support system but did not know anyone with my cancer. I wanted to change that. #GYNCSM https://t.co/4sOcp0lHMP |
| Dee Sparacio @womenofteal T2b - Back in 2006 When insurance denied a PET scan ( to check a spot on my liver) that would determine if I needed more chemo. This led my gyn onc to mention the @LIVESTRONG Summit which I applied to attend and the rest is history. #gyncsm |
| Dee Sparacio @womenofteal RT @IamCervivor: T2b: T2b: I was 24 and faced a lot of challenges throughout treatment. The only other person I knew who experienced #CervicalCancer passed away at 27. I didn't know about Cervivor. I had a support system but did not know anyone with my cancer. I wanted to change that. #GYNCSM https://t.co/4sOcp0lHMP |
 | Codemo Writing Services @roberta_codemo T2 I became interested in advocacy after I was dx w/endometrial cancer. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: I didn't really get active in healthcare advocacy until I spent time working at a cancer nonprofit and after working with those patients and families can't image not staying active in some way. #gyncsm |
| Christina Lizaso @btrfly12 @Mimiinmendon @gyncsm love this - so important in medical training - glad to hear it was initiated by PCP - fyi, @ocrahope offers a formal program for sharing with healthcare trainees #gyncsm |
| Dee Sparacio @womenofteal RT @Mimiinmendon: @gyncsm T2a: @gyncsm T2a: After request from PCP met with his residents to talk about the effects of Cancer/treatment from a patient perspective. #gyncsm |
| IamCervivor @IamCervivor RT @womenofteal: T2b - Back in 2006 When insurance denied a PET scan ( to check a spot on my liver) that would determine if I needed more chemo. This led my gyn onc to mention the @LIVESTRONG Summit which I applied to attend and the rest is history. #gyncsm |
| IamCervivor @IamCervivor RT @roberta_codemo: T2 I became interested in advocacy after I was dx w/endometrial cancer. #gyncsm |
| Dee Sparacio @womenofteal RT @roberta_codemo: T2 I became interested in advocacy after I was dx w/endometrial cancer. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: @Mimiinmendon @gyncsm love this - so important in medical training - glad to hear it was initiated by PCP - fyi, @ocrahope offers a formal program for sharing with healthcare trainees #gyncsm |
| Christina Lizaso @btrfly12 #gyncsm |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @gyncsm The system didn't have the answers I needed so I set out to find them. For myself & others. Along the way, I identified more gaps/challenges but also tons of motivated people who all are looking to change the narrative in cancer. So I've stayed. T2b #gyncsm #bcsm #crcsm #SurvOnc |
| GYN Cancer | #GYNCSM @gyncsm T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system? #gyncsm |
| IamCervivor @IamCervivor RT @coffeemommy: @gyncsm The system didn't have the answers I needed so I set out to find them. For myself & others. Along the way, I identified more gaps/challenges but also tons of motivated people who all are looking to change the narrative in cancer. So I've stayed. T2b #gyncsm #bcsm #crcsm #SurvOnc |
| Christina Lizaso @btrfly12 RT @coffeemommy: @gyncsm The system didn't have the answers I needed so I set out to find them. For myself & others. Along the way, I identified more gaps/challenges but also tons of motivated people who all are looking to change the narrative in cancer. So I've stayed. T2b #gyncsm #bcsm #crcsm #SurvOnc |
| Christina Lizaso @btrfly12 RT @gyncsm: T3: T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system? #gyncsm |
| Dee Sparacio @womenofteal RT @coffeemommy: @gyncsm The system didn't have the answers I needed so I set out to find them. For myself & others. Along the way, I identified more gaps/challenges but also tons of motivated people who all are looking to change the narrative in cancer. So I've stayed. T2b #gyncsm #bcsm #crcsm #SurvOnc |
| Dee Sparacio @womenofteal RT @gyncsm: T3: T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system? #gyncsm |
| IamCervivor @IamCervivor T3: From a provider's point of view: having great listening skills and empathy can go a long way. As a patient advocate: knowledge is power, your personal story has an impact, and persistence is key. #GYNCSM https://t.co/YL1Rj2qsp0 |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @gyncsm So many things to work on in this space. Patient advocacy, Research advocacy, Community advocacy, Policy advocacy and across all sorts of areas - screening, diagnosis, clinical care, survivorship, end-of-life care. Whatever you are driven by, there is room for you here #gyncsm T1 |
| IamCervivor @IamCervivor RT @coffeemommy: @gyncsm So many things to work on in this space. Patient advocacy, Research advocacy, Community advocacy, Policy advocacy and across all sorts of areas - screening, diagnosis, clinical care, survivorship, end-of-life care. Whatever you are driven by, there is room for you here #gyncsm T1 |
| Christina Lizaso @btrfly12 T3: Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it" #gyncsm |
| Christina Lizaso @btrfly12 RT @coffeemommy: @gyncsm So many things to work on in this space. Patient advocacy, Research advocacy, Community advocacy, Policy advocacy and across all sorts of areas - screening, diagnosis, clinical care, survivorship, end-of-life care. Whatever you are driven by, there is room for you here #gyncsm T1 |
| IamCervivor @IamCervivor RT @btrfly12: T3: T3: Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it" #gyncsm |
 | P. F. Anderson is recovering ... slowly @pfanderson RT @btrfly12: T1: T1: Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up. #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @gyncsm: T3: T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system? #gyncsm |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @gyncsm Hey #bcsm #btsm #crcsm #lcsm #mmsm #pancsm #SurvOnc #hpm friends and others... There is room for you at the #gyncsm chat going on NOW and we've got a lot of overlap across cancer types here. cc: @AdvocateCollab |
| Dee Sparacio @womenofteal RT @IamCervivor: T3: From a provider's point of view: having great listening skills and empathy can go a long way. As a patient advocate: T3: From a provider's point of view: having great listening skills and empathy can go a long way. As a patient advocate: knowledge is power, your personal story has an impact, and persistence is key. #GYNCSM https://t.co/YL1Rj2qsp0 |
| Dee Sparacio @womenofteal RT @coffeemommy: @gyncsm So many things to work on in this space. Patient advocacy, Research advocacy, Community advocacy, Policy advocacy and across all sorts of areas - screening, diagnosis, clinical care, survivorship, end-of-life care. Whatever you are driven by, there is room for you here #gyncsm T1 |
| Codemo Writing Services @roberta_codemo T2a I run a FB group, serve as a consumer reviewer with the DOD, and, as a freelance healthcare journalist, write about gyn cancer. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T3: T3: Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it" #gyncsm |
| Christina Lizaso @btrfly12 RT @roberta_codemo: T2a I run a FB group, serve as a consumer reviewer with the DOD, and, as a freelance healthcare journalist, write about gyn cancer. #gyncsm |
| Sevtap Savas, PhD @savaslab RT @btrfly12: T3: T3: Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it" #gyncsm |
 | Laronica Conway @louisianagirl91 @coffeemommy @gyncsm Hey friend! Absolutely! I 2nd this! #gyncsm |
| Dee Sparacio @womenofteal RT @roberta_codemo: T2a I run a FB group, serve as a consumer reviewer with the DOD, and, as a freelance healthcare journalist, write about gyn cancer. #gyncsm |
| Sevtap Savas, PhD @savaslab RT @coffeemommy: @gyncsm The system didn't have the answers I needed so I set out to find them. For myself & others. Along the way, I identified more gaps/challenges but also tons of motivated people who all are looking to change the narrative in cancer. So I've stayed. T2b #gyncsm #bcsm #crcsm #SurvOnc |
| Nita Lee @NitaKarnikLee @gyncsm A2b #gyncsm 1) wanting to focus on education about gyn cancers to promote early detection and prevention 2) wonderful patients who wanted to be creative about how to share info with friends family and communities |
| P. F. Anderson is recovering ... slowly @pfanderson @gyncsm I think the most important resources for healthcare advocacy are (ironically) hope, faith, and love, and the most important is hope. Hoping that something/anything will make a difference for good. #gyncsm |
| Christina Lizaso @btrfly12 T3: Advocacy for yourself or a loved one can mean lots of record keeping - if that's not a skill you have, maybe you can find someone that loves to organize and it is a great way they can feel helpful. #gyncsm |
| Nita Lee @NitaKarnikLee RT @coffeemommy: @gyncsm So many things to work on in this space. Patient advocacy, Research advocacy, Community advocacy, Policy advocacy and across all sorts of areas - screening, diagnosis, clinical care, survivorship, end-of-life care. Whatever you are driven by, there is room for you here #gyncsm T1 |
| Christina Lizaso @btrfly12 RT @pfanderson: @gyncsm I think the most important resources for healthcare advocacy are (ironically) hope, faith, and love, and the most important is hope. Hoping that something/anything will make a difference for good. #gyncsm |
| IamCervivor @IamCervivor RT @btrfly12: T3: T3: Advocacy for yourself or a loved one can mean lots of record keeping - if that's not a skill you have, maybe you can find someone that loves to organize and it is a great way they can feel helpful. #gyncsm |
| Christina Lizaso @btrfly12 RT @NitaKarnikLee: @gyncsm A2b #gyncsm 1) wanting to focus on education about gyn cancers to promote early detection and prevention 2) wonderful patients who wanted to be creative about how to share info with friends family and communities |
| Dee Sparacio @womenofteal T3: The word I use is stick-to-it-iv-ness -Don't be afraid to ask questions. -Learn the medical lingo ( @theNCI has a dictionary https://t.co/vnDECNke73 ) Ask others how they became an advocate. Lots of us are here to help. #gyncsm |
| Dee Sparacio @womenofteal RT @NitaKarnikLee: @gyncsm A2b #gyncsm 1) wanting to focus on education about gyn cancers to promote early detection and prevention 2) wonderful patients who wanted to be creative about how to share info with friends family and communities |
| GYN Cancer | #GYNCSM @gyncsm T4: What are some of the barriers you have experienced in advocating for yourself and/or others? Any tips to pass along? #gyncsm |
| Dee Sparacio @womenofteal RT @pfanderson: @gyncsm I think the most important resources for healthcare advocacy are (ironically) hope, faith, and love, and the most important is hope. Hoping that something/anything will make a difference for good. #gyncsm |
| IamCervivor @IamCervivor RT @womenofteal: T3: T3: The word I use is stick-to-it-iv-ness -Don't be afraid to ask questions. -Learn the medical lingo ( @theNCI has a dictionary https://t.co/vnDECNke73 ) Ask others how they became an advocate. Lots of us are here to help. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T3: T3: Advocacy for yourself or a loved one can mean lots of record keeping - if that's not a skill you have, maybe you can find someone that loves to organize and it is a great way they can feel helpful. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T4: T4: What are some of the barriers you have experienced in advocating for yourself and/or others? Any tips to pass along? #gyncsm |
| Laronica Conway @louisianagirl91 Excellent response! One can choose to advocate for anything that is important to them or to their families. And if advocacy work doesn’t exist in a certain space, create it! Who will tell you no, especially if it’s needed? ❤️#gyncsm |
| Nita Lee @NitaKarnikLee RT @btrfly12: T3: T3: Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it" #gyncsm |
| Nita Lee @NitaKarnikLee RT @womenofteal: T3: T3: The word I use is stick-to-it-iv-ness -Don't be afraid to ask questions. -Learn the medical lingo ( @theNCI has a dictionary https://t.co/vnDECNke73 ) Ask others how they became an advocate. Lots of us are here to help. #gyncsm |
| Mimi @Mimiinmendon @gyncsm #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T4: T4: What are some of the barriers you have experienced in advocating for yourself and/or others? Any tips to pass along? #gyncsm |
| Christina Lizaso @btrfly12 RT @louisianagirl91: Excellent response! One can choose to advocate for anything that is important to them or to their families. And if advocacy work doesn’t exist in a certain space, create it! Who will tell you no, especially if it’s needed? ❤️#gyncsm |
| IamCervivor @IamCervivor T4: Our community faces: systemic racism, access to care, misdiagnosis, ageism, financial toxicity, lack of medical coverage, and food scarcity. Find your social workers and nurse navigators (if available) or reach out to The Patient Advocate Foundation or @familyreach. #GYNCSM |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @gyncsm Depends on type of advocacy you're doing. If you're working 1:1 or as a voice for larger community you MUST be beyond your own story. Important to remember your story is powerful but it is YOUR story, everyone has a different experience & we need to change the big picture #gyncsm |
| Dee Sparacio @womenofteal @louisianagirl91 Love this! Create it is just what the cancer hashtag communities on Twitter did - #bcsm, #lcsm, #btsm, #gyncsm |
| Dee Sparacio @womenofteal #gyncsm |
| Dee Sparacio @womenofteal RT @IamCervivor: T4: Our community faces: T4: Our community faces: systemic racism, access to care, misdiagnosis, ageism, financial toxicity, lack of medical coverage, and food scarcity. Find your social workers and nurse navigators (if available) or reach out to The Patient Advocate Foundation or @familyreach. #GYNCSM |
| IamCervivor @IamCervivor RT @coffeemommy: @gyncsm Depends on type of advocacy you're doing. If you're working 1:1 or as a voice for larger community you MUST be beyond your own story. Important to remember your story is powerful but it is YOUR story, everyone has a different experience & we need to change the big picture #gyncsm |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @louisianagirl91 So much this: "If it doesn't exist, create it" This is EXACTLY how these Twitter groups formed... there was a need. #gyncsm |
| Christina Lizaso @btrfly12 T4: Those in healthcare are not always used to informed, empowered patients. Getting better maybe? Showing up with an open mind and trying to understand the "other side" can help. But also be alert for those just wanting free labor / just "using" your story #gyncsm |
| Dee Sparacio @womenofteal @coffeemommy @gyncsm Agree 100% #gyncsm |
| Christina Lizaso @btrfly12 RT @coffeemommy: @louisianagirl91 So much this: "If it doesn't exist, create it" This is EXACTLY how these Twitter groups formed... there was a need. #gyncsm |
| Christina Lizaso @btrfly12 RT @coffeemommy: @gyncsm Depends on type of advocacy you're doing. If you're working 1:1 or as a voice for larger community you MUST be beyond your own story. Important to remember your story is powerful but it is YOUR story, everyone has a different experience & we need to change the big picture #gyncsm |
| Christina Lizaso @btrfly12 RT @IamCervivor: T4: Our community faces: T4: Our community faces: systemic racism, access to care, misdiagnosis, ageism, financial toxicity, lack of medical coverage, and food scarcity. Find your social workers and nurse navigators (if available) or reach out to The Patient Advocate Foundation or @familyreach. #GYNCSM |
| Dee Sparacio @womenofteal RT @btrfly12: T4: T4: Those in healthcare are not always used to informed, empowered patients. Getting better maybe? Showing up with an open mind and trying to understand the "other side" can help. But also be alert for those just wanting free labor / just "using" your story #gyncsm |
| Nita Lee @NitaKarnikLee @coffeemommy @gyncsm #gyncsm well said providers and patients can work to partner on all of these levels; this range is so important. |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @gyncsm @womenofteal For myself: Old school paternalism and protocol-based care. For others: Access to affordable, quality treatment options. For communities: oh man... #healthquity is one of the biggest challenges in all of healthcare, not just cancer. T4 #gyncsm |
 | Manju George MVSc PhD Rectal cancer Survivor @manjuggm RT @coffeemommy: @gyncsm Depends on type of advocacy you're doing. If you're working 1:1 or as a voice for larger community you MUST be beyond your own story. Important to remember your story is powerful but it is YOUR story, everyone has a different experience & we need to change the big picture #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T5: What are some of the organizations, programs and resources that have helped you become a more confident advocate and/or provide opportunities for you to advocate? Feel free to share their twitter handle and/or website. #gyncsm |
| Dee Sparacio @womenofteal T4 Patient advocates want to be involved but many do not have the $ to attend meetings or participate in presentations/panels. Support from Pharma and the oncology organizations could help. It has improved some but not in all cases. #gyncsm |
| Dee Sparacio @womenofteal RT @coffeemommy: @gyncsm @womenofteal For myself: @gyncsm @womenofteal For myself: Old school paternalism and protocol-based care. For others: Access to affordable, quality treatment options. For communities: oh man... #healthquity is one of the biggest challenges in all of healthcare, not just cancer. T4 #gyncsm |
| IamCervivor @IamCervivor RT @womenofteal: T4 Patient advocates want to be involved but many do not have the $ to attend meetings or participate in presentations/panels. Support from Pharma and the oncology organizations could help. It has improved some but not in all cases. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T5: T5: What are some of the organizations, programs and resources that have helped you become a more confident advocate and/or provide opportunities for you to advocate? Feel free to share their twitter handle and/or website. #gyncsm |
| Christina Lizaso @btrfly12 T4: Virtual options for meetings/conferences has been great to reduce some barriers for patients participating. Hope that hybrid events will stick around. Also patient scholarships. #gyncsm |
| Laronica Conway @louisianagirl91 RT @coffeemommy: @louisianagirl91 So much this: "If it doesn't exist, create it" This is EXACTLY how these Twitter groups formed... there was a need. #gyncsm |
| IamCervivor @IamCervivor T5: Cervivor was the first that gave me hope and the skills to use my voice for change. Then I went back to #Iowa and built partnerships with @ACSCAN, @ABCancer, @BrasfortheCause, @CancerIowa, & @IAPublicHealth. #GYNCSM https://t.co/f8cMdksMVx |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @womenofteal And some organizations are finally starting to extend patient advocate rates. @ASCO @SABCSSanAntonio @AACR @myESMO and others... #gyncsm |
| Laronica Conway @louisianagirl91 RT @btrfly12: T1: T1: Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up. #gyncsm |
| Christina Lizaso @btrfly12 #gyncsm - resource: |
| Christina Lizaso @btrfly12 RT @gyncsm: T5: T5: What are some of the organizations, programs and resources that have helped you become a more confident advocate and/or provide opportunities for you to advocate? Feel free to share their twitter handle and/or website. #gyncsm |
| Christina Lizaso @btrfly12 RT @IamCervivor: T5: T5: Cervivor was the first that gave me hope and the skills to use my voice for change. Then I went back to #Iowa and built partnerships with @ACSCAN, @ABCancer, @BrasfortheCause, @CancerIowa, & @IAPublicHealth. #GYNCSM https://t.co/f8cMdksMVx |
| IamCervivor @IamCervivor RT @btrfly12: T4: T4: Virtual options for meetings/conferences has been great to reduce some barriers for patients participating. Hope that hybrid events will stick around. Also patient scholarships. #gyncsm |
| Dee Sparacio @womenofteal T5 Top picks #gyncsm @ASCO Patient advocacy RAN research advocacy network @RAN https://t.co/eHs57VzoNp Citizen Scientist @ufhealthcenter https://t.co/lHrXp824xK ECANA Endometrial Cancer Network for African American Women @ECANAwomen https://t.co/vgyDV2SXym |
| Nita Lee @NitaKarnikLee @womenofteal #gyncsm agree completely! Need more prioritizing of advocate voice with money to support in these spaces otherwise additional risk of disparities in whose voice can be heard and amplified |
| Dee Sparacio @womenofteal RT @IamCervivor: T5: T5: Cervivor was the first that gave me hope and the skills to use my voice for change. Then I went back to #Iowa and built partnerships with @ACSCAN, @ABCancer, @BrasfortheCause, @CancerIowa, & @IAPublicHealth. #GYNCSM https://t.co/f8cMdksMVx |
| Codemo Writing Services @roberta_codemo T5 I have to credit the SGO and the FWC for giving me advocacy opportunities as well as SLOCA. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T4: T4: Virtual options for meetings/conferences has been great to reduce some barriers for patients participating. Hope that hybrid events will stick around. Also patient scholarships. #gyncsm |
| IamCervivor @IamCervivor RT @womenofteal: T5 Top picks #gyncsm @ASCO Patient advocacy RAN research advocacy network @RAN https://t.co/eHs57VzoNp Citizen Scientist @ufhealthcenter https://t.co/lHrXp824xK ECANA Endometrial Cancer Network for African American Women @ECANAwomen https://t.co/vgyDV2SXym |
| Dee Sparacio @womenofteal RT @btrfly12: #gyncsm - resource: #gyncsm - resource: |
| IamCervivor @IamCervivor RT @NitaKarnikLee: @womenofteal #gyncsm agree completely! Need more prioritizing of advocate voice with money to support in these spaces otherwise additional risk of disparities in whose voice can be heard and amplified |
| IamCervivor @IamCervivor RT @roberta_codemo: T5 I have to credit the SGO and the FWC for giving me advocacy opportunities as well as SLOCA. #gyncsm |
| Dee Sparacio @womenofteal RT @NitaKarnikLee: @womenofteal #gyncsm agree completely! Need more prioritizing of advocate voice with money to support in these spaces otherwise additional risk of disparities in whose voice can be heard and amplified |
| Christina Lizaso @btrfly12 T5: The @AACR scientist to survivor program and others like it are great. @power4patients also has good blog/resources including great advocate tips from @JBBC Also good stuff via @CancerAdvocacy @GlobalGenes #gyncsm |
| Dee Sparacio @womenofteal RT @roberta_codemo: T5 I have to credit the SGO and the FWC for giving me advocacy opportunities as well as SLOCA. #gyncsm |
| Sarah Temkin @temkins RT @btrfly12: T5: T5: The @AACR scientist to survivor program and others like it are great. @power4patients also has good blog/resources including great advocate tips from @JBBC Also good stuff via @CancerAdvocacy @GlobalGenes #gyncsm |
| Christina Lizaso @btrfly12 RT @NitaKarnikLee: @womenofteal #gyncsm agree completely! Need more prioritizing of advocate voice with money to support in these spaces otherwise additional risk of disparities in whose voice can be heard and amplified |
| IamCervivor @IamCervivor RT @btrfly12: T5: T5: The @AACR scientist to survivor program and others like it are great. @power4patients also has good blog/resources including great advocate tips from @JBBC Also good stuff via @CancerAdvocacy @GlobalGenes #gyncsm |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @NitaKarnikLee @womenofteal And that voice needs to be heard throughout the year, not just at annual conference to pull on heartstrings. And not just as part of video to make pharma companies look 'patient-centric'. We need to integrate the roles in a meaningful way into the industry of healthcare. #gyncsm |
| Laronica Conway @louisianagirl91 @gyncsm T3 You have to look past the fear of the unknown and the fear of rejection. Advocacy work can sometimes be “thankless” if it feels as if you aren’t accomplishing something important. So focus on YOUR ‘why’ & don’t waver. #gyncsm |
| Dee Sparacio @womenofteal @IamCervivor @ACSCAN @ABCancer @BrasfortheCause @CancerIowa @IAPublicHealth Pre-Covid Cervivor School https://t.co/sJgqv2GNNU was an excellent way to learn about advocacy. Will it be starting up soon? #gyncsm |
| Nita Lee @NitaKarnikLee @coffeemommy @womenofteal #gyncsm yes! |
| GYN Cancer | #GYNCSM @gyncsm T6: Are there things that groups focusing on advocating for gyn cancer, those w/ & at-risk for hereditary cancer, and all cancers could provide to better support you when it comes to advocacy? What issues in the gyn cancer community do we need to draw attention to? #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T5: T5: The @AACR scientist to survivor program and others like it are great. @power4patients also has good blog/resources including great advocate tips from @JBBC Also good stuff via @CancerAdvocacy @GlobalGenes #gyncsm |
 | Tamika Felder @tamikafelder RT @btrfly12: T5: T5: The @AACR scientist to survivor program and others like it are great. @power4patients also has good blog/resources including great advocate tips from @JBBC Also good stuff via @CancerAdvocacy @GlobalGenes #gyncsm |
| IamCervivor @IamCervivor RT @louisianagirl91: @gyncsm T3 You have to look past the fear of the unknown and the fear of rejection. Advocacy work can sometimes be “thankless” if it feels as if you aren’t accomplishing something important. So focus on YOUR ‘why’ & don’t waver. #gyncsm |
| Tamika Felder @tamikafelder RT @womenofteal: T5 Top picks #gyncsm @ASCO Patient advocacy RAN research advocacy network @RAN https://t.co/eHs57VzoNp Citizen Scientist @ufhealthcenter https://t.co/lHrXp824xK ECANA Endometrial Cancer Network for African American Women @ECANAwomen https://t.co/vgyDV2SXym |
| Dee Sparacio @womenofteal RT @coffeemommy: @NitaKarnikLee @womenofteal And that voice needs to be heard throughout the year, not just at annual conference to pull on heartstrings. And not just as part of video to make pharma companies look 'patient-centric'. We need to integrate the roles in a meaningful way into the industry of healthcare. #gyncsm |
| Christina Lizaso @btrfly12 RT @louisianagirl91: @gyncsm T3 You have to look past the fear of the unknown and the fear of rejection. Advocacy work can sometimes be “thankless” if it feels as if you aren’t accomplishing something important. So focus on YOUR ‘why’ & don’t waver. #gyncsm |
| Christina Lizaso @btrfly12 RT @coffeemommy: @NitaKarnikLee @womenofteal And that voice needs to be heard throughout the year, not just at annual conference to pull on heartstrings. And not just as part of video to make pharma companies look 'patient-centric'. We need to integrate the roles in a meaningful way into the industry of healthcare. #gyncsm |
| Mimi @Mimiinmendon RT @btrfly12: T5: T5: The @AACR scientist to survivor program and others like it are great. @power4patients also has good blog/resources including great advocate tips from @JBBC Also good stuff via @CancerAdvocacy @GlobalGenes #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T6: T6: Are there things that groups focusing on advocating for gyn cancer, those w/ & at-risk for hereditary cancer, and all cancers could provide to better support you when it comes to advocacy? What issues in the gyn cancer community do we need to draw attention to? #gyncsm |
| Manju George MVSc PhD Rectal cancer Survivor @manjuggm @gyncsm Non-uniformity of care is a big issue. The care people get for the same disease or condition varies widely. If you don't have an idea of the treatments people get in different places, you don't know what's missing for you and what you can advocate for. #gyncsm |
| Dee Sparacio @womenofteal @coffeemommy @NitaKarnikLee Yes! Cancer Centers / community health centers should be including patient advocates at all levels - patient experience, patient support, SRB, IRB , center priorities etc. #gyncsm |
| Dee Sparacio @womenofteal RT @louisianagirl91: @gyncsm T3 You have to look past the fear of the unknown and the fear of rejection. Advocacy work can sometimes be “thankless” if it feels as if you aren’t accomplishing something important. So focus on YOUR ‘why’ & don’t waver. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T6: T6: Are there things that groups focusing on advocating for gyn cancer, those w/ & at-risk for hereditary cancer, and all cancers could provide to better support you when it comes to advocacy? What issues in the gyn cancer community do we need to draw attention to? #gyncsm |
| Dee Sparacio @womenofteal RT @manjuggm: @gyncsm Non-uniformity of care is a big issue. The care people get for the same disease or condition varies widely. If you don't have an idea of the treatments people get in different places, you don't know what's missing for you and what you can advocate for. #gyncsm |
| Christina Lizaso @btrfly12 @manjuggm @gyncsm Yes, absolutely a big issue. I remember some study that only like 40% of ovarian cancer patients were getting NCCN recommended treatment. Valid reasons also included I'm sure, but something that needs to be addressed/studied. #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @IamCervivor: T5: T5: Cervivor was the first that gave me hope and the skills to use my voice for change. Then I went back to #Iowa and built partnerships with @ACSCAN, @ABCancer, @BrasfortheCause, @CancerIowa, & @IAPublicHealth. #GYNCSM https://t.co/f8cMdksMVx |
| P. F. Anderson is recovering ... slowly @pfanderson RT @coffeemommy: @NitaKarnikLee @womenofteal And that voice needs to be heard throughout the year, not just at annual conference to pull on heartstrings. And not just as part of video to make pharma companies look 'patient-centric'. We need to integrate the roles in a meaningful way into the industry of healthcare. #gyncsm |
| Laronica Conway @louisianagirl91 ALL of this!! #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @womenofteal: @coffeemommy @NitaKarnikLee Yes! Cancer Centers / community health centers should be including patient advocates at all levels - patient experience, patient support, SRB, IRB , center priorities etc. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Already time for closing thoughts as you finish up T6! We hold the last few minutes of the chat to wrap up and share with each other what you learned or were reminded of during this chat. You can start your tweet with TIL: standing for “Today I Learned”. #gyncsm |
| Manju George MVSc PhD Rectal cancer Survivor @manjuggm @gyncsm The @NCCN patient guidelines are a great resource! It benefits all newly diagnosed patients to read the @NCCN disease-specific patient guidelines multiple times in the course of their disease journey. #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson @coffeemommy @NitaKarnikLee @womenofteal That annual video should have snippets from day 1 through day 30 through day 360 showing that engagement with patients #GyncSm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @NitaKarnikLee: @gyncsm Hi!very important topic! I am a gyn oncologist @UCCancerCenter very interested as usual to learn from fantastic advocates #gyncsm re needs or gaps, resources; interested in Formalizing mechanisms to integrate skilled patient advocates and build capacity among new advocates |
| P. F. Anderson is recovering ... slowly @pfanderson RT @btrfly12: T3: T3: Advocacy for yourself or a loved one can mean lots of record keeping - if that's not a skill you have, maybe you can find someone that loves to organize and it is a great way they can feel helpful. #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @btrfly12: T4: T4: Virtual options for meetings/conferences has been great to reduce some barriers for patients participating. Hope that hybrid events will stick around. Also patient scholarships. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm #GYNCSM (Gynecological Cancers Social Media) is participating #Dazzle4Rare all week – Learn about some of the rare gynecologic cancers on our blog at https://t.co/a5i6IMooV2 and follow the hashtag to learn about other rare diseases. |
| Dee Sparacio @womenofteal We know that women dx with #ovca are not getting the genetic testing they should be getting. That may prevent them from getting the best treatment for their cancer. #gyncsm |
| Manju George MVSc PhD Rectal cancer Survivor @manjuggm RT @btrfly12: @manjuggm @gyncsm Yes, absolutely a big issue. I remember some study that only like 40% of ovarian cancer patients were getting NCCN recommended treatment. Valid reasons also included I'm sure, but something that needs to be addressed/studied. #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @btrfly12: T3: T3: Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it" #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @IamCervivor: T4: Our community faces: T4: Our community faces: systemic racism, access to care, misdiagnosis, ageism, financial toxicity, lack of medical coverage, and food scarcity. Find your social workers and nurse navigators (if available) or reach out to The Patient Advocate Foundation or @familyreach. #GYNCSM |
| Dee Sparacio @womenofteal RT @manjuggm: @gyncsm The @NCCN patient guidelines are a great resource! It benefits all newly diagnosed patients to read the @NCCN disease-specific patient guidelines multiple times in the course of their disease journey. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: We know that women dx with #ovca are not getting the genetic testing they should be getting. That may prevent them from getting the best treatment for their cancer. #gyncsm |
| IamCervivor @IamCervivor We're making our way back into things - Like this exciting partnership with @StJude for an #HPV Cancer Survivors School! The application closes on 8/19. Visit: https://t.co/iK6Ay4YqCj. #GYNCSM https://t.co/GyaIw45mRR |
| P. F. Anderson is recovering ... slowly @pfanderson @IamCervivor @familyreach I’m saving this tweet. Thank you #gyncsm |
| Christina Lizaso @btrfly12 RT @manjuggm: @gyncsm The @NCCN patient guidelines are a great resource! It benefits all newly diagnosed patients to read the @NCCN disease-specific patient guidelines multiple times in the course of their disease journey. #gyncsm |
| P. F. Anderson is recovering ... slowly @pfanderson RT @womenofteal: T5 Top picks #gyncsm @ASCO Patient advocacy RAN research advocacy network @RAN https://t.co/eHs57VzoNp Citizen Scientist @ufhealthcenter https://t.co/lHrXp824xK ECANA Endometrial Cancer Network for African American Women @ECANAwomen https://t.co/vgyDV2SXym |
| Christina Lizaso @btrfly12 RT @Thatmskizzy: #Dazzle4Rare awareness post for my #birthworker friends |
| IamCervivor @IamCervivor T6: Support orgs like all of us, by sharing our stories, supporting our programming, engaging in our social media content, including the patient voice in research, advisory boards, etc. Creating inclusive and culturally competent policies, clinical trials, & resources. #GYNCSM |
| Dee Sparacio @womenofteal RT @IamCervivor: We're making our way back into things - Like this exciting partnership with @StJude for an #HPV Cancer Survivors School! The application closes on 8/19. Visit: https://t.co/iK6Ay4YqCj. #GYNCSM https://t.co/GyaIw45mRR |
| Dee Sparacio @womenofteal RT @IamCervivor: T6: T6: Support orgs like all of us, by sharing our stories, supporting our programming, engaging in our social media content, including the patient voice in research, advisory boards, etc. Creating inclusive and culturally competent policies, clinical trials, & resources. #GYNCSM |
| Nita Lee @NitaKarnikLee @womenofteal @coffeemommy @UCCancerCenter @KDRichardson924 @ivybelkins @nicolecbullock1 #gyncsm oops |
| GYN Cancer | #GYNCSM @gyncsm Thanks to everyone for the truly wonderful conversation today. Save the date for our next #gyncsm chat on Wednesday, September 14th at 8pmET when we’ll discuss Clinical Trials. September is also Gynecologic Cancer Awareness Month. We hope to see you then. |
| Dee Sparacio @womenofteal T6 : Bring advocates at the design stage of clinical trials don't wait till it is in final protocol form. Researchers need to ask themselves what is the best way to way to reach people of color and ethnic minorities. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Thanks to everyone for the truly wonderful conversation today. Save the date for our next #gyncsm chat on Wednesday, September 14th at 8pmET when we’ll discuss Clinical Trials. September is also Gynecologic Cancer Awareness Month. We hope to see you then. |
| GYN Cancer | #GYNCSM @gyncsm #gyncsm : |
| Dee Sparacio @womenofteal #gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28.Further information may be found at https://t.co/3WN8VB22Uw |
| IamCervivor @IamCervivor RT @gyncsm: Thanks to everyone for the truly wonderful conversation today. Save the date for our next #gyncsm chat on Wednesday, September 14th at 8pmET when we’ll discuss Clinical Trials. September is also Gynecologic Cancer Awareness Month. We hope to see you then. |
| Sarah Temkin @temkins RT @gyncsm: Thanks to everyone for the truly wonderful conversation today. Save the date for our next #gyncsm chat on Wednesday, September 14th at 8pmET when we’ll discuss Clinical Trials. September is also Gynecologic Cancer Awareness Month. We hope to see you then. |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @womenofteal @NitaKarnikLee Candidly, I'm talking about at a higher level. A patient experience role should be part of the leadership team helping to set the strategy & identifying key target goals (beyond HCAHPS) not just the transactional relationship with monthly "patient advisory councils" #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Wishing wellness and safety for all. As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| Nita Lee @NitaKarnikLee RT @womenofteal: #gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28.Further information may be found at https://t.co/3WN8VB22Uw |
| Dee Sparacio @womenofteal WOW! the hour flew by tonight! Thanks everyone for joining us and thanks for my partner @btrfly12 for the excellent moderating tonight. #gyncsm |
| Sarah Temkin @temkins RT @manjuggm: @gyncsm Non-uniformity of care is a big issue. The care people get for the same disease or condition varies widely. If you don't have an idea of the treatments people get in different places, you don't know what's missing for you and what you can advocate for. #gyncsm |
| Christina Lizaso @btrfly12 #gyncsm Resource | Quick guides to different types of advocacy @TriageCancer https://t.co/mFdAe8Tc6t |
| IamCervivor @IamCervivor RT @womenofteal: #gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28.Further information may be found at https://t.co/3WN8VB22Uw |
| Dee Sparacio @womenofteal Remember to check https://t.co/Df2f7Okp35 for a transcript of the chat and resources #gyncsm |
| Dee Sparacio @womenofteal Till next month -Stay well Teal Sisters, healthcare providers and caregivers. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: #gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28.Further information may be found at https://t.co/3WN8VB22Uw |
| IamCervivor @IamCervivor RT @btrfly12: #gyncsm Resource | Quick guides to different types of advocacy @TriageCancer https://t.co/mFdAe8Tc6t |
| Christina Lizaso @btrfly12 RT @womenofteal: T6 : T6 : Bring advocates at the design stage of clinical trials don't wait till it is in final protocol form. Researchers need to ask themselves what is the best way to way to reach people of color and ethnic minorities. #gyncsm |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @NitaKarnikLee @womenofteal @UCCancerCenter @KDRichardson924 @ivybelkins @nicolecbullock1 You have some of the BEST advocates on that team - and this is a testament to your program because I know they would not be there if the relationship was founded in tokenism. Well done! #gyncsm #lcsm #crcsm #bcsm |
| Christina Lizaso @btrfly12 This #gyncsm : |
| Sarah Temkin @temkins RT @womenofteal: #gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28.Further information may be found at https://t.co/3WN8VB22Uw |
| GYN Cancer | #GYNCSM @gyncsm RT @womenofteal: Remember to check https://t.co/Df2f7Okp35 for a transcript of the chat and resources #gyncsm |
 | NCI Cancer Stats @NCICancerStats The human papillomavirus (HPV) is responsible for nearly all cases of cervical cancer worldwide. The Pap test and HPV test can screen cervical cells for changes caused by HPV. Watch our “Did You Know?” video to learn more: https://t.co/S0PHlJc5l8 #GynCSM |
| Nita Lee @NitaKarnikLee RT @btrfly12: #gyncsm Resource | Quick guides to different types of advocacy @TriageCancer https://t.co/mFdAe8Tc6t |
| Christina Lizaso @btrfly12 Running behind on sharing a TIL: but it was really great chatting with everyone and remembering how much we have in common across types of advocacy and disease areas. Thanks to all for all you do. #gyncsm |
 | Tracy Rode @tracyrode Gardasil your kids please. |
| GYN Cancer | #GYNCSM @gyncsm T5: #gyncsm - advocacy resources |
 | Christine (Cissy) White @healWRITEnow @gyncsm T5: #gyncsm and individuals who share about opportunities for advocates as @AMJohnston1315 or @stacy_hurt have done, who take time on the phone, email, video, Twitter to make intros, share info., collaborate. That's also helpful. Those who amplify & invite varied voices. |
| Christina Lizaso @btrfly12 RT @healWRITEnow: @gyncsm T5: @gyncsm T5: #gyncsm and individuals who share about opportunities for advocates as @AMJohnston1315 or @stacy_hurt have done, who take time on the phone, email, video, Twitter to make intros, share info., collaborate. That's also helpful. Those who amplify & invite varied voices. |
 | Virginia Ron @VirginiaRon3 RT @IamCervivor: T4: Our community faces: T4: Our community faces: systemic racism, access to care, misdiagnosis, ageism, financial toxicity, lack of medical coverage, and food scarcity. Find your social workers and nurse navigators (if available) or reach out to The Patient Advocate Foundation or @familyreach. #GYNCSM |
| Christine (Cissy) White @healWRITEnow @gyncsm T4: #gyncsm For myself: Being a parent & while diagnosed - a single one who had to work for insurance. Better medical options didn't always mesh with needing to work, drive, parent. For others: time/energy is limited & breaking through & finding ways to use skills meaningfully. |
| Dee Sparacio @womenofteal @coffeemommy @NitaKarnikLee You are correct. My center has an Action Board. We bring our ideas to the meetings and changes have been made and ideas implemented. this resource suggested / designed by a group of advocates to reach the community through arts #gyncsm https://t.co/vLmV2KaClh |
| Dee Sparacio @womenofteal RT @btrfly12: #gyncsm Resource | Quick guides to different types of advocacy @TriageCancer https://t.co/mFdAe8Tc6t |
| Dee Sparacio @womenofteal RT @btrfly12: Running behind on sharing a TIL: Running behind on sharing a TIL: but it was really great chatting with everyone and remembering how much we have in common across types of advocacy and disease areas. Thanks to all for all you do. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: @coffeemommy @NitaKarnikLee You are correct. My center has an Action Board. We bring our ideas to the meetings and changes have been made and ideas implemented. this resource suggested / designed by a group of advocates to reach the community through arts #gyncsm https://t.co/vLmV2KaClh |
| Dee Sparacio @womenofteal RT @healWRITEnow: @gyncsm T4: #gyncsm For myself: @gyncsm T4: #gyncsm For myself: Being a parent & while diagnosed - a single one who had to work for insurance. Better medical options didn't always mesh with needing to work, drive, parent. For others: time/energy is limited & breaking through & finding ways to use skills meaningfully. |
| Christine (Cissy) White @healWRITEnow @gyncsm T2: #gyncsm Wanting to make a difference beyond myself. My Nana had the same diag/prognosis, basically. Know science/time alone aren't enough. We have to push / demand / work so standard of care isn't standard of fail for so many. |
| P. F. Anderson is recovering ... slowly @pfanderson RT @womenofteal: @coffeemommy @NitaKarnikLee You are correct. My center has an Action Board. We bring our ideas to the meetings and changes have been made and ideas implemented. this resource suggested / designed by a group of advocates to reach the community through arts #gyncsm https://t.co/vLmV2KaClh |
| P. F. Anderson is recovering ... slowly @pfanderson RT @healWRITEnow: @gyncsm T4: #gyncsm For myself: @gyncsm T4: #gyncsm For myself: Being a parent & while diagnosed - a single one who had to work for insurance. Better medical options didn't always mesh with needing to work, drive, parent. For others: time/energy is limited & breaking through & finding ways to use skills meaningfully. |
| Christina Lizaso @btrfly12 RT @healWRITEnow: @gyncsm T2: @gyncsm T2: #gyncsm Wanting to make a difference beyond myself. My Nana had the same diag/prognosis, basically. Know science/time alone aren't enough. We have to push / demand / work so standard of care isn't standard of fail for so many. |
| Christine (Cissy) White @healWRITEnow @gyncsm #gyncsm Writing, speaking up, collaborating with other patients, non-profits, networking, letter writing. |
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