Sunday, March 12, 2017

Advocating for Gynecologic Oncology Clinical Trials - #Trials4GynCancerNow

The SGO (Society of Gynecologic Oncology) is conducting their Annual Meeting March 12-15, 2017. You can follow research presented at the meeting by following the hashtag #SGOMtg on Twitter. Note that we'll discuss SGO Meeting highlights during our April 12th #gyncsm chat

During their annual meeting, SGO will be conducting a social media campaign to advocate for gynecologic cancer clinical trials. #gynscm is please to support this campaign and we hope you will join us.

There has been a steep decline in the number of clinical trials in gynecologic cancer since the restructuring of the NCI-sponsored cooperative groups in 2012.  Information about the campaign can be found in this SGO document.

You can join us as we support this campaign by tweeting the following starting on Monday, March 13th at 9:35amEST:
Women with #gyncancer deserve progress. Fund trials now @realDonaldTrump #Trials4GynCancerNow @SGO_org

Feel free to send additional tweets using #Trials4GynCancerNow to encourage increased funding of NCI trials. 

Thanks, 

Dee
#gyncsm Co-Founder 

Wednesday, March 8, 2017

Gyn Cancer Health Disparities Chat -March 8th, International Womens Day

Today, March 8th, International Womens Day, we chatted about Gyn Cancer Health Disparities. We were pleased to have a number of new participants join our community for this chat. We had twenty-six participants and over 1.8 million impressions. You may find more analytics here.

For our discussion we used the NCI definition of cancer health disparities "adverse differences in cancer incidence (new cases), cancer prevalence (all existing cases), cancer death (mortality), cancer survivorship, and burden of cancer or related health conditions that exist among specific population groups in the United States. "

Below, please find a sample of the responses to our questions. To read the full transcript please visit this page on Symplur.

T1: What are some of the factors that contribute to cancer health disparities?

  • Lack of access to regular screenings puts underserved groups at a higher risk for developing cancer-related malignancies
  • Medical "literacy." How close you live to healthcare, especially great healthcare, and how willing you are to go there. Also income, health insurance, and how good that insurance is
  • There are historic factors, race, socio-economic, edu, & access, but there's also the not talked about, systemic & provider,
  • Poverty, isolation, lower socioeconomic status, race, ethnicity, lack of insurance, disenfranchised, mental illness
  • Racial/ethnic differences, genetic factors, rural-urban status--both cultural norms spatial access concerns--, socioeconomics
  • Poverty, socioeconomic status, poor education, mistrust of medical profession (warranted in some groups

T2: What are some of the effects of health disparities you see in the experience of gyn cancer diagnosis, treatment, and beyond? 

  • So many ways that disparities rear their ugly heads- delayed diagnosis, inadequate care, inadequate access to supportive care
  • In poorer comms, est 24% of providers admit they don't even discuss CATs or survivorship w/ minorities
  • With cervical cancer and precancer, access to screening and follow-up! when something found definitely impacted by disparities
  • Studies have shown <50% of women w/ ovarian cancer meeting genetic testing criteria, are referred for genetics + differences by race
  • Some women--like those in rural areas-- sometimes don't get regular pap smears leading to later stage at dx and poorer outcomes 
  • Health disparities, particularly with access, results in fewer minorities participating in #clinicaltrials
  • Much of research blames patient Social Determinants Of Health 4 disparities but lack of culturally-appropriate & buy-in providers is definitely a factor


T3: Which populations are most affected by these cancer disparities? What are some groups and resources addressing the issues?

  • Health disparities also exist among LGBT population - summary article by G. Quinn at Moffitt: https://t.co/5eD2xDBk4a
  • Recent disparities data shows African American women as 40% more likely to develop #cervicalcancer
  • Risk for health disparity= anyone! Gyn cancers can be rare, and not all health care systems are created equally knowledgeable.
  • African American women are disproportionately affected by cancer disparities. Esp rates of increase
  • The recent re-adjustment on cervical cancer stats showed disparity greater than thought for African American and Hispanic women 
  • There are also biological factors contributing to disparities in cancer #uterinecancer p53 & USC 

T4: What role does past research play in how disparities arise? What role does future research play in addressing disparities? 

  • Great opportunity to reduce disparities through CBPR and community engaged efforts in addtion to NGOs, NCI, and other orgs
  • Cancer research already limited for women. Diversity within the women studied is a barrier.
  • Researchers should make intentional effort to include diverse populations in studies,not just the patients conveniently available
  • It is on the investigator to include underserved groups - it can't just be a "convenience sample"
  • For historic data to play a role in epidemiology research, data has to be actionable. We need better analyst and data scientist 
  • @SGO_org is launching a campaign around #Trials4GynCancerNow Check the #gyncsm blog heading into next week to support
  • Henrietta Lacks! Highlighting past research transgressions can,hopefully, reduce future disparities, improve trust in research
  • The #CAPfoundation is trying to help with screening in populations underserved populations https://t.co/DpeOQpr867 
  • Researchers can also study ways to change or reduce cancer prevention, diagnosis & tx disparities to help prevent future cancers
  • @mdandersonnews has a department that focuses on how to increase minority involvement in clinical trials and research studies 

T5: How can we work together to address and reduce gyn cancer health disparities in our own communities and beyond?

  • As a @GeneticCouns, while only one person, I help underserved women access counseling and testing
  • continue to raise awareness so that increased funds can be directed toward this issue
  • We know patients of gyn oncs better outcomes. Train more gyn oncs for underserved communities
  • 5 Work to encourage funding 4 GynCa programs that support SDOH initiatives. Insist disparity disruptors get funded
  • Promote #clinicaltrial awareness - Less than 2% of NCI studies have enough minorities to meet NIH goals
  •  Increased collaboration in academia and beyond --partner instead of compete for research/outreach $-->synergistic research etc
  • The @C3Prize seeks answers to these cancer treatment challenges annually. Collaborate on a project. Get it funded.
  • partnering with others who are passionate, like @ShewithLynch to raise awareness of disparities in hereditary cancer
  • hopefully support for physicians to provide telemed might move the needle in that direction to ⬆ access
  • working on a government and health policy level can help reduce health disparities... healthcare in flux=opportunity to improve

We ended out chat as we always do with Today I Learned. Some of today's thoughts were:

  • Final thought. Be brave enough to discuss disparities in professional health comms. Our greatest resource is our resolve to "care"
  • TIL that our community= passionate re: eliminating gyn cancer disparities! We can join together to raise awareness & promote change
  • TIL health Disparities are deep within the fabric of of health care and will require education and active reform. 
  • TIL: The complexity of health disparities is great - but the passion to eliminate these disparities exists and will drive us forward
Please scroll down to find the links to topic resources shared during this chat.

Remember you can always continue the conversation on the Smart Patients Platform ( https://www.smartpatients.com/partners/gyncsm  ).

The SGO Meeting (#SGOMtg) takes place from March 12-15. @SGO_org is launching a campaign around #Trials4GynCancerNow. Check the #gyncsm blog heading into next week to support this effort.

We hope you will join us on April 12, 2017 as we discuss research results reported on at the SGO meeting during our SGO Research Review and ASK the Docs Chat.

See you then.

Dee
#gyncsm Co-Founder


RESOURCES

NCI Cancer Health Disparities Fact Sheet (including cervical cancer overview)
https://www.cancer.gov/about-nci/organization/crchd/cancer-health-disparities-fact-sheet

Approaching Health Disparities From a Population Perspective: The National Institutes of Health Centers for Population Health and Health Disparities https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2509592/
Disparities in Gynecological Malignancies https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761838/

Racial Disparities in Cervical Cancer, Worse Than We Thought http://onlinelibrary.wiley.com/doi/10.1002/cncr.30501/full

SGO Taskforce Report on Gyn Cancer Disparities https://www.sgo.org/wp-content/uploads/2014/05/Collins-et-al.pdf

CDC Health Disparities and Inequality reports https://www.cdc.gov/minorityhealth/chdireport.html

Cancer and Lesbian, Gay, Bisexual, Transgender/Transsexual, and Queer/Questioning Populations (LGBTQ) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4609168/

National LGBT Cancer Network @cancerLGBT http://cancer-network.org/
Society of Gynecologic Oncology @SGO_org
National Society of Genetic Counselors @GeneticCouns
@pinkredribbon
http://thelancet.com/series/womens-cancers

NY Times: Wider gap in cervical cancer deaths https://www.nytimes.com/2017/01/23/health/cervical-cancer-united-states-death-toll.html?smid=tw-nytimes&smtyp=cur&_r=2

Cancer Mortality in the Mississippi Delta Region: Descriptive Epidemiology and Needed Future Research and Interventions http://muse.jhu.edu/article/648763

CAP Foundation's "See, Test & Treat" partners with Day of the Latina Woman program in Houston https://www.youtube.com/watch?v=7wysxxdmUAM&feature=youtu.be

Participation in Cancer Clinical Trials - Race-, Sex-, and Age-Based Disparities http://jamanetwork.com/journals/jama/fullarticle/198896

Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001918

NCI launches study of African-American cancer survivors https://www.nih.gov/news-events/news-releases/nci-launches-study-african-american-cancer-survivors

Does equal treatment yield equal outcomes? The impact of race on survival in epithelial ovarian cancerhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC2612941/

Opportunities and Challenges in Cancer Health Disparities Research
https://www.cancer.gov/research/areas/disparities

In Cancer Trials, Minorities Face Extra Hurdles
https://www.nytimes.com/2016/12/23/health/cancer-trials-immunotherapy.html?_r=1

#SGOMtg
Abstracts https://www.sgo.org/wp-content/uploads/2016/12/SGO-AM17-abstract_titles.pdf
Late-abstracts https://www.sgo.org/education/annual-meeting-on-womens-cancer/annual-meeting-late-breaking-abstracts/
General info https://www.sgo.org/education/annual-meeting-on-womens-cancer/


Friday, March 3, 2017

March 8, 2017 - Gyn Cancer Health Disparities



Healthcare disparities can effect various populations in the U.S. due to a number of reasons - economic, cultural, racial, geographic, age or gender. The National Cancer Institute (NCI) defines cancer health disparities as "adverse differences in cancer incidence (new cases), cancer prevalence (all existing cases), cancer death (mortality), cancer survivorship, and burden of cancer or related health conditions that exist among specific population groups in the United States." Studies have shown that disparities in diagnosis, treatment, access and clinical trial participation impact the lives of women diagnosed with a gynecologic cancer. During this month's #gyncsm chat we will discuss Gynecologic Cancer Health Disparities and ways to reduce them.

Please join us as we discuss this issue using these topic questions:

T1: What are some of the factors that contribute to cancer health disparities?

T2: What are some of the effects of health disparities you see in the experience of gyn cancer diagnosis, treatment, and beyond? 

T3: Which populations are most affected by these cancer disparities? What are some groups and resources addressing the issues?

T4: What role does past research play in how disparities arise? What role does future research play in addressing disparities? 

T5: How can we work together to address and reduce gyn cancer health disparities in our own communities and beyond?


Check this NCI page ( https://www.cancer.gov/about-nci/organization/crchd/cancer-health-disparities-fact-sheet) for more information on Cancer Health Disparities.

See you on March 8th, which is also International Women's Day!
Check here to see the chat time in your local time zone.


New to tweetchats? See:


Dee
#gyncsm Co-Founder