#GynCSM Transcript

Healthcare social media transcript of the #GynCSM hashtag.
().
See #GynCSM Influencers/Analytics.

ProfileTweet
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.
#GynCSM content from Twitter.