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 https://www.smartpatients.com/gyncsm.


 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!


Dee
@gyncsm Co-Founder

RESOURCES

Research Advocacy Network : General Resources for research advocates
http://researchadvocacy.org/general-resources
http://researchadvocacy.org/advocate-institute

What is a Cancer Research Advocate via @CancerDotNet http://www.cancer.net/blog/2016-12/what-cancer-research-advocate

Resource | Being A Cancer Advocate via @CancerDotNet http://www.cancer.net/research-and-advocacy/patient-advocates/being-cancer-advocate 

@theNCI has a great Research Advocacy 101 video
https://www.cancer.gov/about-nci/organization/oar/research-advocacy/research-advocacy-101

8 Tips on Gaining Access to Journal Articles via @medivizor https://medivizor.com/blog/2014/12/18/8-tips-gaining-access-to-journal-articles/

scientist - survivor program offered by @AACR http://www.aacr.org/AdvocacyPolicy/SurvivorPatientAdvocacy/Pages/scientistharr;survivor-program___403E94.aspx#.WD83COErKi5

OCRFA Advocate Leader Program https://ocrfa.org/advocacy/advocate-leaders/
OCRFA Advocacy Action Alerts https://ocrfa.org/advocacy/how-you-can-help/

@NOCC_National calendar has events nationwide: https://t.co/wMkCaD09mb

PCORI peer reviewer http://www.sciencesupport.org/PCORIpeer/start/index.cfm
PCORI additional info:
http://www.pcori.org/research-results/research-dissemination-and-implementation
http://www.pcori.org/blog/how-cancer-survivors-make-difference-pcori

Sarcoma Clinical Trials http://www.curesarcoma.org/patient-resources/sarcoma-clinical-trials/

@GlobalGenes toolkits: https://globalgenes.org/toolkits/from-molecules-to-medicines-how-patients-can-share-their-voices-throughout-the-drug-development-process/introduction/
and https://globalgenes.org/toolkits/bringing-rare-disease-to-capitol-hill-advocating-for-your-cause/background-information/

Genetic Alliance Advocacy http://www.geneticalliance.org/advocacy

Welcome your new research partner: Patients https://blogs.biomedcentral.com/on-medicine/2016/12/09/welcome-your-new-research-partner-patients/

Former Rep. Gingrey's recent article on Ovarian Cancer Research http://thehill.com/blogs/congress-blog/healthcare/309680-with-no-screening-test-available-research-and-awareness-key-to

Rare Disease Week on Capitol Hill http://rareadvocates.org/rdw/

Guest column: Congress should support cancer research http://www.theadvocate.com/baton_rouge/opinion/article_3dc1fbf8-b00f-11e6-8127-9768bdfdcccd.html

@CureForward Webinar: Precision medicine and clinical trials for #ovariancancer. https://www.cureforward.com/norma-leah-ovarian-cancer-initiative/

https://clinicaltrials.gov/
https://ocrfa.org/patients/clinical-trials/

Article | Patients Attending Medical Conferences: What’s Happening? https://medivizor.com/blog/2015/05/21/patients-attending-medical-conferences-patients-included/

https://patientsincluded.org/conferences/

NCI: How You Can Help Medical Research: Donating Your Blood, Tissue, and Other Samples https://www.cancer.gov/publications/patient-education/help-research-donate-tissue
  
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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