This month we celebrated our 11th anniversary as a community and chat on X.
Christina and I appreciate the support provided to us by patients and caregivers, our health care moderators, advocacy and medical organizations, chat guests, researchers, social workers and navigators as well as.
We were so pleased to have representatives from GRASP and OCRA join us as we discussed various types of advocacy from personal to research. You may find our transcript here and analytics here.
Here are some highlights from chat:
T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?
- I advocate for gyn health by using/sharing resources from OCRA, like our educational materials and support services. Education empowers us to advocate for ourselves & our loved ones. Check out our site for resources for patients & caregivers: ocrahope.org/resources-supp Advocating for your own health means being informed and proactive. Ask questions, share what matters to you, connect with knowledgeable communities, and seek second opinions when possible.
- I try - not always successfully - to write down my main concerns and questions before each appointment so I can get the most out of the short time in the visit.
- read up! Find research to answer potential questions, distill it to basics and ask doctors to explain it in context to the patient.
- Empowering patients is critical in shared decision making. Each patient is different and therefore recommendations should be tailored to each patients. Simplifying terminology to help patients and families understand diagnosis and treatment is a crucial first step.
T2: What are some tips and resources for being an effective advocate for yourself or your loved ones in the healthcare system?
- Find the right online resources, connect with cancer organizations, and seek out others with similar diagnoses.
- A key to being your own best advocate? Be proactive! Know your health history, ask questions & seek second opinions if needed. Resources like OCRA’s "Find a Doctor" tool can help locate gyn-oncs, specialists & treatment centers in your area: ocrahope.org/resources-supp
- Many of the disease organizations like @ocrahope @GYNCancer @CancerDotNet
- have Questions to Ask Your Doctor lists and other great resources. You are not alone and education helps empower. @ECANAwomen @SHARECancerSupt @ucan2020
- having a list of questions can be very helpful to guide the discussion and make sure all of your questions are answered; having something to take notes and refer back to, inviting a friend or family/caregiver to be an extra set of ears and review is also good.
- Patients are experts in their own bodies. If a patient or family member is concerned about a symptoms then we need to make sure those concerns are addressed. Always always always listen to the patient.
T3: What does being a "research advocate" involve? What are some of the ways people can get involved with cancer research - like grant review, clinical trials design, research dissemination, and/or conferences?
- Being a research advocate means bringing the patient experience into the research process. Your insight is invaluable. Get involved and make your voice heard.
- Being a research advocate involves providing patient insights into the experience of clinical trials. This can include making a trial easier to understand or improving patient feedback procedures. Connect with orgs like OCRA for opportunities: ocrahope.org/get-involved/v.
- Online training programs can help you start your journey as a research advocate. Learn the science, but remember: YOU are the expert in your experience.
- Want to get involved in cancer research? Start by connecting with organizations like GRASP that offer training and opportunities to collaborate with researchers
- #gyncsm did a past chat with
- @RANAdvocate
- focused on Research Advocacy - here's the recap with some info and links: http://gyncsm.blogspot.com/2016/12/getting-involved-in-research-advocacy.html
- There are multiple organizations where patient advocates can get involved in research including
- @NRGonc You can also talk to your doctor. Patient voices & community perspectives are essential in research. Working together to improve patient outcomes and experiences.
- Coursera offers a great program on the biology of cancer.
- @AACR has a Scientist to Survivor Program
- Reach out to the Advocate collaborative @AdvocateCollab advocatecollaborative.org A great group for support, education and information.
- consider talking to your own Onc team- many GYN oncologist are involved in research and could potentially use a patient advocate on their teams! @NCIResearchCtr NCI designated Cancer centers often have community and patient research advocacy options for engagement!
T4: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?
- OCRA is the largest charity in the world devoted to ovarian & related gynecologic research, having invested $122 million to date. Keep up with the impact, results, and major breakthroughs of this research and learn more about our grantees here: ocrahope.org/research/impac
- There are a number of groups that share information in lay terms. @theNCI
- has a glossary cancer.gov/publications/d. You don’t need to understand all of it. But you are the expert.
- I signed up for emails from @CancerNetwrk and also keep up with@ASCOPost . Their summaries of the journal articles are well written for a general audience to understand.
- More and more healthcare conferences do include patient advocates and can be a great experience. And organizations like @ocrahope @gyncancer @facingourrisk have conferences just for patients
- Of course, follow the #gyncsm on X during the @ASCO @SGO_org @IGCSociety @myESMO
- annual meetings and you will learn the latest research being presented. And it is OK to ask questions of the poster if you don't understand the research.
- Follow gyn onc groups on social media, podcasts, conferences. There are special rates and many times there are funding sources to help patients and advocates attend conferences.
- #gyncsm following major organizations can help pts explore research and consider opportunities for engagement at meetings @GYNCancer @SGO_org @IGCANetwork
- Join the SGO, FWC and ASCO. These organizations are great with providing up-to-date info. Conferences are also a great way to stay informed."
- @MedicalwatchBCMedWatch has a newsletter you can sign up for specific gyn cancers news medical.watch
T5: What are some tips when it comes to reaching out to Congress or your local legislatures about cancer research? What has shown to be effective?
- @CancerAdvocacy just posted today about applications for their Cancer Policy & Advocacy Team (CPAT) canceradvocacy.org/get-involved/c
- When reaching out to legislators, be clear/specific, provide personal stories and data to illustrate impact, and follow up consistently. Build relationships and participate in advocacy events, such as OCRA’s Advocacy Day. Learn more here: ocrahope.org/advocacy/becom
- Want to be more involved year-round? OCRA’s Advocate Leaders program trains/supports advocates across the country to develop relationships w/ elected officials & fight for expanded federal resources. Applications for the 2025 cohort open Sep 25 ocrahope.org/advocacy/becom
- @HealthUnion has a wonderful blog with many relevant topics for healthcare advocates: socialhealthnetwork.com/stories/advoca https://socialhealthnetwork.com/guest-expert/the-evolution-of-health-advocacy
- I have worked in politics most of my career. I have worked in a Congressional district office. Familiarize yourself with your elected officials local, state, and national. From that perspective when there is legislation that impacts cancer patients send your member a personal message explaining why you are for or against it. Make sure to mention you are a constituent. That is taken much more seriously than a petition with lists of names. There is much more you can do, but that is by far the easiest way to engage with your elected officials.
T6: For gynecologic cancers, what are the barriers in raising awareness and advocating for improvements in care? What issues do you think it's important for the #gyncsm community to advocate around?
- Barriers to raising awareness include lack of education & limited funding. Advocating for improved care involves addressing gaps in research & funding for gyn cancers, as well as disparities in access to quality care. Join the fight/take action ocrahope.org/advocacy/sign- #
- reach out to your local state legislators from your own district, find out if they have a cancer caucus #gyncsm Consider aligning with larger organizations such as @ASCO @SGO_org @ACSCAN
- I feel like things have come a long way in terms of the stigma of "down there" cancers. That lays the foundation to spread even more education. Thanks to everyone who is using this awareness month to spread #gyncsm facts and information.
- Spreading the word about gyn cancers during #GCAM has become easier and I love the teal ribbons but knowleddge about rarer type of gyn cancers , clear cell OC, Low Grade , Vulvar, Vaginal in the general public is still low. Education is key.
- barriers and disparities along race, ethnicity geography and SES are along the whole continuum of care in #hpvvaccine #genetictesting #access to GYN oncologists; #Clinicaltrials
- I think more awareness of hereditary mutations that lead to gyn cancers needs greater awareness. Impact on family - daughters AND sons is so important. #gyncsm
- T6: Spreading information. Addressing misinformation. Discussing HPV vaccination. Evaluating post menopausal bleeding. Cervical cancer screening. Talking about signs & symptoms of cancer. Financial investments in research. We have come a long way but have a long way to go
- #gyncsm addressing barriers, also means ensuring that there is diversity and representation in all forms of advocacy, including research advocacy. @BCancerCollab1 @KDRichardson924 is a leader in this space!
We invite you to help us plan future chats by taking our community survey at https://forms.gle/
Remember you can continue our discussion about advocacy on @smart_patients by joining Smart Patients at https://www.smartpatients.com/partners/gyncsm .
See you in December when we are joined by Cervivor to discuss Cervical Cancer.
Dee and Christina
Co-moderators
