Wednesday, December 14, 2016

Getting Involved in Research Advocacy - Dec 14th Chat

We ended this year of chats by discussing Research Advocacy. We were delighted to have Elda Railey (@RANAdvocate), Research Advocacy Network, join us as our guest. The Research Advocacy Network's mission is "to develop a network of advocates and researchers who influence cancer research-from initial concept to patient care delivery-through collaboration, education and mutual support." Among our forty-three participants were a number of cancer research advocates. You may read the transcript here and additional analytics may be found here.

Below is a sampling of the responses we received to our five topic questions.

T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research? 
RAN Slide of Opportunities for Research Advocates

T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?

T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?

T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?

Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at

The next #gyncsm chat will be a joint chat with #mayacc on Wednesday, January 11 at 9pmET. Our topic will be "Young Adults: Life Following a Cancer Diagnosis."

Happy Holidays!
Happy New Year!

@gyncsm Co-Founder


Research Advocacy Network : General Resources for research advocates

What is a Cancer Research Advocate via @CancerDotNet

Resource | Being A Cancer Advocate via @CancerDotNet 

@theNCI has a great Research Advocacy 101 video

8 Tips on Gaining Access to Journal Articles via @medivizor

scientist - survivor program offered by @AACR;survivor-program___403E94.aspx#.WD83COErKi5

OCRFA Advocate Leader Program
OCRFA Advocacy Action Alerts

@NOCC_National calendar has events nationwide:

PCORI peer reviewer
PCORI additional info:

Sarcoma Clinical Trials

@GlobalGenes toolkits:

Genetic Alliance Advocacy

Welcome your new research partner: Patients

Former Rep. Gingrey's recent article on Ovarian Cancer Research

Rare Disease Week on Capitol Hill

Guest column: Congress should support cancer research

@CureForward Webinar: Precision medicine and clinical trials for #ovariancancer

Article | Patients Attending Medical Conferences: What’s Happening?

NCI: How You Can Help Medical Research: Donating Your Blood, Tissue, and Other Samples
Research news sources: @HealthNewsRevu @medivizor @PubMedHealth @Medscape  @cancernetwrk @ascopost @cochraneconsumr
Other resources mentioned: @patientslikeme @smart_patients @researchmatch @cureforward @ResearchAmerica @UMR4NIH @ConquerCancerFd @RareAdvocates @EveryLifeOrg

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