See you in 2017!
Dee and Christina
#gyncsm Co-founder
Tuesday, December 20, 2016
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?
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?
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 |
— PCORI (@PCORI) December 15, 2016
T1 Patient-Centered Outcomes Research helps ppl make informed decisions, allowing voices to be heard in assessing healthcare options #gyncsm
The most common way people get involved in supporting cancer research is monetary donation. #gyncsm https://t.co/CkENYVMhPJ— Rick Boulay,MD (@journeycancer) December 15, 2016
T1: You can also donate your own medical history, tissue, tumors or blood for research. #gyncsm— Christina Lizaso (@btrfly12) December 15, 2016
T1 cancer research includes registries, questionnaire studies about variety of topics, even studies re: nutrition, exercise, etc! #gyncsm https://t.co/OHTEwjxBlm— Erica Bednar (@EMBOSU) December 15, 2016
T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?
T2 PCORI’s new Dissemination and Implementation program will help translate the science. Learn more! https://t.co/N9j0WhWTAq #gyncsm— PCORI (@PCORI) December 15, 2016
T2-Another resource I like to use is the ASCO Post, Medpage Today and other blogs from NCI and the FDA— Research Advocacy (@RANAdvocate) December 15, 2016
#gyncsm
T2 I checked out major institutions, researchers, read & ask questions #gyncsm— Tobey-BRCA-Previvor (@BRCAinfo) December 15, 2016
T2 I search for #leiomyosarcoma (including uterine) every day on Twitter & Google. #gyncsm PubMed also offers alerts.— Suzie Siegel (@SuzieSiegel) December 15, 2016
T2 for hereditary cancer research, check out organizations like @FacingOurRisk & @BeBrightPink for current research opportunities #gyncsm— Erica Bednar (@EMBOSU) December 15, 2016
T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?
Research adv.can be the "translator" of scientific/ medical information to lay ppl. Imprtnt for research adv to be well trained! #gyncsm— Research Advocacy (@RANAdvocate) December 15, 2016
— Dee Sparacio (@womenofteal) December 15, 2016
T3: @theNCI has a great Research Advocacy 101 video discussing an advocate’s role & opportunities with NCI: https://t.co/RqcUgOlt7K #gyncsm— Mateon Therapeutics (@MateonTX) December 15, 2016
T3 SM is important for awareness &connection Best to be IN THE DISCUSSION when research is designed like in cooperative grp #gyncsm— Research Advocacy (@RANAdvocate) December 15, 2016
T3 10 years ago we invited ourselves to conversation. Big change, they now invite us. #gyncsm— Susan Leighton (@LilySue49) December 15, 2016
T3 Social media helps share info, experience and advice, making it easier to become an advocate #hcsm #gyncsm https://t.co/z5maG5YCw9— Stephanie Fischer (@RarePOV) December 15, 2016
T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?
T4: Ask your MD how to get involved with research - there are so many opportunities to participate! #gyncsm— Shannon Westin (@ShannonWestin) December 15, 2016
T4 You can help assess quality of PCORI research reports - sign up to be a peer reviewer! https://t.co/wuV2xybPGG #gyncsm— PCORI (@PCORI) December 15, 2016
Being a research advocate requires time , dedication, compassion & most of all, understanding in an unbiased fashion at all times. #gyncsm— Lisa M Guzzardi, RN (@LguzzardiM) December 15, 2016
— Christina Lizaso (@btrfly12) December 15, 2016
T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?T4 - One way to "enter" into res. adv. is to do a training program- AACR Sci-Survivor, @RANetwork Focus on Research, etc.— Research Advocacy (@RANAdvocate) December 15, 2016
#gyncsm
— Dee Sparacio (@womenofteal) December 15, 2016
T5 To advocate for more resources for @nih research, engage with organizations such as @ResearchAmerica & @UMR4NIH #gyncsm— Stephanie Fischer (@RarePOV) December 15, 2016
T5 Commenting during a policy comment period posted in the Federal Register can help too— Research Advocacy (@RANAdvocate) December 15, 2016
#gyncsm
#gyncsm T5 Having a relationship with your Congresswoman/Congressman allows you to take information where it matters most, their vote.— Kerie Berkowitz (@KerieBerkowitz) December 15, 2016
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
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
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
Thursday, December 8, 2016
December Chat - Getting Involved in Research Advocacy (12/14)
In the past our community has chatted about advocating for yourself and others and about being a gyn cancer advocate. This month on Wednesday, December 14 at 9pmET (8pmCT/6pmPT) we would like to extend the advocacy topic to include how those impacted by a gynecologic cancer can become involved in cancer research and become a research advocate.
Our guest this month will be Elda Railey (@RANAdvocate) from Research Advocacy Network (RAN). You can read more about Elda, a founder of RAN, here.
We invite all those who are already research advocates and all those who want to learn about getting involved with research and becoming a research advocate to join the discussion, which will be guided by these topic questions:
T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research?
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?
In addition to the resources found on the Research Advocacy Network site you may also visit the AACR website's page on Becoming a Advocate for Medical Research.
We look forward to seeing you on the 14th for our final chat of 2016.
Dee and Christina
Co-founders #gyncsm Community
Our guest this month will be Elda Railey (@RANAdvocate) from Research Advocacy Network (RAN). You can read more about Elda, a founder of RAN, here.
We invite all those who are already research advocates and all those who want to learn about getting involved with research and becoming a research advocate to join the discussion, which will be guided by these topic questions:
T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research?
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?
In addition to the resources found on the Research Advocacy Network site you may also visit the AACR website's page on Becoming a Advocate for Medical Research.
We look forward to seeing you on the 14th for our final chat of 2016.
Dee and Christina
Co-founders #gyncsm Community
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