The #gyncsm community welcomed twenty-two participants as we discussed Advocating for Yourself and Others. You may find the transcript here and analytics here. For resources, please see responses to Topic Question 5 .
Before we started the chat, we took a moment to remember a very special advocate Dicey Scroggins. 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
T1: What are some of the different types of healthcare advocacy?- 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.
- 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.
- 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
- My list includes Advocating for yourself , advocating for increasing funding of research, legislative and policy advocacy, advocating for patient engagement in clinical trial access,
- 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.
- 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
- 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?
T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare?
T2b: What prompted you to "put on your advocacy hat"?
- 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.
- 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.
- 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!
- 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
- After request from PCP met with his residents to talk about the effects of Cancer/treatment from a patient perspective
- 2b: How could anyone know a patient with gynecologic cancer and not love them and advocate for them?
- T2 I became interested in advocacy after I was dx w/endometrial cancer
- 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
- I run a FB group, serve as a consumer reviewer with the DOD, and, as a freelance healthcare journalist, write about gyn cancer
- 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.
- 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.
- 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"
- 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
- 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
- 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.
- 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
- 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
- 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 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.
- 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.
- 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.
- Top picks #gyncsm @ASCO Patient advocacy RAN research advocacy network @RAN https://researchadvocacy.org/general-resources Citizen Scientist @ufhealthcenter https://t.co/lHrXp824xK ECANA Endometrial Cancer Network for African American Women @ECANAwomen https://ecanawomen.org/research/seat-at-the-table
- I have to credit the SGO and the FWC for giving me advocacy opportunities as well as SLOCA
- 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
- Pre-Covid Cervivor School was an excellent way to learn about advocacy.
- 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://web.cvent.com/event/298dd689-d6a3-4c90-8529-cb8a9d85a1fd/summary?rt=YNd0WApTzkGoW8swuRt6ng
- 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.
- 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.
- (Survivors Teaching Students), the (podcasts, resources, blog to stay on top of what's current as relates to #ovariancancer), and individuals like @womenofteal @KDRichardson924 @coffeemommy @jillfeldman4
who mentor.
- 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.
- Cancer Centers / community health centers should be including patient advocates at all levels - patient experience, patient support, SRB, IRB , center priorities etc.
- 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
- Quick guides to different types of advocacy @TriageCancer https://triagecancer.org/cancer-advocacy
We are so happy so many advocates could join us and share their experience and support one another.
#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://igcs.org/advocacy/advocacy-summit/
Gynecologic Cancers Social Media is participating #Dazzle4Rare all week. Learn about some of the rare gynecologic cancers on our blog at https://gyncsm.blogspot.com/2020/09/september-9-2020-rare-ovarian-and-rare.html and follow the #GYNCSM hashtag to learn about other rare diseases.
Save the date for our next #gyncsm
chat on Wednesday, September 14th at 8pmET. We’ll discuss Clinical
Trials. September is also Gynecologic Cancer Awareness Month.
We hope to
see you then.
Dee and Christina
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