Yesterday, I had a phone conversation with a stage 4 ovarian cancer survivor who was interested in becoming a research advocate. We met on Twitter and have followed each other for the past few months. She asked me questions about how I got started in advocacy and places she could go to prepare to become a cancer research advocate. In A Bit of Advocate in All of Us an article I wrote for SHARE
(https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/ ) I wrote about different types of advocacy. Today I want expand on that information I provided on research advocacy.
General Cancer Research Advocacy:
Research Advocacy Network - (http://researchadvocacy.org/)
RAN offers downloadable resources on topics such as those listed below that a research advocate can find beneficial.
Tutorial:Genomics in Cancer
Tutorial: Molecular Diagnostics in Cancer
Tutorial: Pathology and Tissue Research
Tutorial: Understanding Cancer Risk
Tutorial: Understanding Clinical Trial Design
Tutorial: Quality of Life and Patient Reported Outcomes
Tutorial: Biomarkers in Cancer
RAN also offers an online course on The Basics for Research Advocacy (https://researchadvocacy.org/advocate-institute/online-course-basics-research-advocacy )
The AACR (American Association for Cancer Research, www.aacr.org) has programs specifically for research advocates. I know a number of advocates, ovarian and other types, who have participated in the Scientist<-> Survivor Program at the AACR Annual Meeting."The program provides advocates with special lectures using lay language, small group discussions, and other opportunities for the exchange of information on key aspects of cancer research, survivorship, advocacy, and public policy." The deadline for the program at next year's AACR program is December 11,2018. Follow this link - https://www.aacr.org/ADVOCACYPOLICY/SURVIVORPATIENTADVOCACY/PAGES/ANNUAL-SCIENTISTHARR%3bSURVIVOR-PROGRAM-AT-THE-ANNUAL-MEETING___01696D.ASPX for more information and the online application. ->
ASCO / Cancer.Net
The American Society of Clinical Oncology, ASCO , welcomes patient advocates as members at the Patient Advocate level (https://www.asco.org/get-involved/membership/member-benefits/patient-advocates). This membership allows patients/advocates access to savings on registration at meetings, magazines, guidelines and volunteer opportunities.
The Foundation arm of ASCO is Cancer.Net. "The Conquer Cancer Patient Advocate Scholarship Program provides scholarships for patient advocates to attend ASCO-sponsored Symposia and the ASCO Annual Meeting to learn of important advances in their areas of interest. Scholarships help cover travel, hotel, and registration expenses and are based primarily on ﬁnancial need, advocacy experience, and current advocacy activities and involvement." This link (https://www.cancer.net/research-and-advocacy/patient-advocates/conquer-cancer-patient-advocate-scholarship-program) will provide information on the 2019 meeting scholarships when the application period opens.
Ovarian Cancer Research Advocacy Information
Ovarian Cancer Research Alliance
OCRA (ocrahope.org ), formerly OCRFA, provides information on various types of advocacy. On their Research Advocacy Page (https://ocrahope.org/advocacy/research-advocacy/) you can read reports on research from their advocates who attend various medical conferences and meetings. While those who represent OCRA as Research Advocates are by invitation only, the stories of a few advocates such as Annie Ellis and Susan Leighton can provide additional ideas for roles you can play in supporting research.
OCRA also has a program known as Advocate Leaders which is a legislative advocates program. (https://ocrahope.org/advocacy/advocate-leaders/ )
Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/index.php)
"The FORCE Research Advocate Training (FRAT) Program is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast, ovarian and related cancers community. " After filling out an application and being accepted into the Training program you take part in a number of webinars. You may learn more at http://www.facingourrisk.org/research-clinical-trials/research-advocate-program.php
I hope this helps other women get started as Research Advocates. If you know of other research advocate opportunities or training please let me know and I will update this page.
Thanks T for providing the spark I needed to write this blog post.
Every Day is a Blessing!