Becoming a Research Advocate

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 )


AACR
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. 

<->(https://www.aacr.org/patients-caregivers/patient-advocacy/)

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/ ) 


FORCE 
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. 

Dee
Every Day is a Blessing! 

Updated 2022

ASCO 2015 Part I : Connections

One of the most memorable parts of my attendance at the ASCO Annual Meeting was meeting other patient advocates, ovarian cancer organization representatives and researchers and physicians.

It all began on Friday night when I attended the Focus on Research Scholar Dinner. I was a Focus on Research Scholar in 2011.  It was at that time that I first met Mary Lou Smith and Elda Rainey, Research Advocacy Network founders. It was so nice to catch up with both of them and I was happy to see Alumni Scholars from 2011 at the dinner continuing their advocacy. The class of scholars this year included breast, ovarian, kidney cancers and and advocate for those with brain tumors. The dinner was delicious and it was a special night as we all honored Mary Lou for the Partners in Progress ASCO Award she would be receiving.



Before I left for ASCO I reached out to a few of the other advocates to see if we could meet. I was so happy to meet Janet Daily-Freeman ( #lcsm), Georgia Hurst (@shewithLynch) and Dan Dubin( @AliveandKickn ) in the enormous Exhibit Hall.

Georgia Hurst, Dan Durbin and I meet at the AmbryGenetics booth.

On Saturday evening, ASCO held a "Tweet Up" for the health care professionals  as well as advocates and others tweeting from the meeting.  I was live tweeting from the meeting for the #gyncsm community and this event was a must do on my calendar. I am so happy that I was able to meet so many of the doctors and researchers I interact with on twitter. After a year and a half working with them on  #gyncsm chats,  I finally got to meet health care moderators, Dr Don Dizon and Dr. Merry Markham and Dr Katz whose support of #gyncsm is so appreciated.  Also in attendance were Dr Attai, #bcsm co-moderator, whose warm welcome of me to the #bcsm chat planted the seed to create a chat for gynecologic cancer survivors.

Finally meeting Drs. Markham and Dizon, #gyncsm health care moderators

Late Sunday morning, I met oncologist, Ophira Ginsberg. We also follow each other on Twitter and met through the #gyncsm chat. Ophira's work has concentrated on ways to improve global cancer control and equality in women's healthcare. She has initiated a program of population intervention  and training in Vietnam, Bangladesh, and sub-Saharan Africa. I know that the impact of ovarian cancer as well as other gynecologic cancers is a global problem. There are countries that have 0 CT machines , yes,  you read that correctly ZERO machines.( I think of what might have happened if a CT machine did not pick up my recurrence.) In the future I plan on sharing the work that Ophira and others are doing to improve the healthcare of women with gynecologic cancers worldwide.   

Throughout the meeting I had the opportunity to talk not only to advocates from the US but also advocates from Egypt, Brazil, Nigeria and Japan. Our goals and motivations regardless of disease site or geographic location were the same: to raise awareness, to increase research to find screening tests, to develop more effective treatments and to support survivors. We just have to tailor those goals to our country’s needs. 

I had the opportunity to speak to researchers and oncologists from France, Canada, Netherlands, Belgium and Italy. The poster sessions were the best time to have more in depth conversations with the presenters about their work. I was so happy to see trials designed to included participants and sites in various countries. 

I introduced myself and handed out the #gyncsm business card to many oncologists and researchers at the meeting. But what a nice surprise when Roisin O'Cearbhaill, a researcher from Memorial Sloan Kettering came up to me and said " Hello , I met you at the Kaleidoscope of Hope Dinner. I am so glad to see you at the meeting". 

Yes, advocates are welcome at medical conferences.  

Dee

Every Day is a Blessing  

ASCO 2012 (HAWMC 23 My choice)

Health Activist Choice Day 2! Write about whatever you like.


I am one happy cancer research advocate. I learned last week that I will be receiving a scholarship from the Conquer Cancer Foundation to attend this year's ASCO (American Society of Clinical Oncologists ) Annual meeting in Chicago. Their goal is to improve cancer care and prevention. The Annual Meeting is the largest conference on cancer research in the US with over 25,000 cancer researchers attending the meeting.

Last year I attended the meeting as a Research Advocacy Network Focus on Research Scholar . I met so many dedicated advocates and enjoyed interacted with researchers from all over the world. I learned the results of a large ovarian cancer screening study, the latest Avastin trials results as well as the difficulties researchers face in recruiting patients into clinical trials.  I was thrilled to be able to talk directly to researchers who were presenting their posters and appreciated the time they took to explain the experimental design to me.

My attendance this year will continue to focus on Ovarian Cancer, Survivorship and Clinical Trial Design presentations and poster sessions. In addition to updating my blog from the meeting when I return I will develop a handout and PowerPoint presentation "Cancer Research for Survivors" with pointers on clinical trials, study design and how to read medical journal articles and posters.
 Thank you Conquer Cancer Foundation for giving me the opportunity to improve my skills as a cancer research advocate.

Dee
Every day is a Blessing!

Cancer Research for the Layperson

As you may know I have been preparing information for my "Reading Between the Lines: What Cancer Research Means for You" talk for the past few weeks. My goal was to make cancer research results more understandable to the lay person.

I was thrilled when I entered the comfy, living room like setting of the CSC-CNJ to see seven women ready to hear me speak. Because of the informal setting it was easy to have a real conversation with these women. I shared information I had learned about clinical trials and they asked questions about protocols. I relayed questions that medical journalists should ask when writing articles and we turned it in to questions survivors should ask themselves when they hear cancer research news in the media. We talked about the words used in articles about cancer and they added to my list. We discussed experimental versus observational studies. I spoke about the format of peer-reviewed journals. I happened to pick a 2008 phase III study for small cell lung cancer as the example and it included a drug one of the women had been on, so that lead to an interesting one-on-one discussion with her at the end of my talk. I was happy to spend the hour with these survivors.

Thank you to The Cancer Support Community Central NJ (CSC-CNJ) for giving me the opportunity to share what I learned about cancer research as a Research Advocacy Network Focus on Research Scholar.

Dee

Every Day is a Blessing!

ASCO - the End Part II

All the Focus on Research© Scholars where asked to video a testimonial about their experience as an advocate at ASCO. Below is my testimonial.

I am an ovarian cancer survivor and advocate. Being part of the Focus on Research© program this year has been an honor.

The preparation offered prior to attending the conference was invaluable. Learning about biomarkers, drug development and clinical trial design has increased my understanding of cancer research. Interacting with the webinar lecturers, Drs Byers, Hong and Bemis helped to improve my communication skills and raised my confidence to discuss research topics with poster presenters and education session lecturers. Knowing the language and acronyms of cancer pathways, drugs and agents was an asset during the conference.

At ASCO the interaction with other advocates and hearing about their experiences has been both enjoyable and inspirational. I look forward to maintaining these relationships for years to come.

Another benefit of my attendance has ben an increased respect for cancer researchers and the challenges they face in both the US and internationally. I was thrilled to interact with a large number of international researchers at poster sessions and in the lecture hall. Learning about advances such as PARP inhibitors, monoclonal antibodies and other individualized medicine agents gives me hope for the future of cancer research.

I look forward to working with my dissemination partner. My goal is to share the exciting research developments I learned about this weekend in terms that are understandable by patients and caregivers.

Thank you to the Research Advocacy Network's Advocate Institute© for the incredible opportunity.

Dee

Every Day is a Blessing!

Gearing up for ASCO

For the past 2 months I have been preparing for the American Society of Clinical Oncologist (ASCO) Annual Meeting in Chicago. I am attending as part of the Research Advocates Network(RAN) Focus on Research program . I appreciate the opportunity RAN is providing me to hear the latest research results. My goal and the goal of the Focus on Research Program is to disseminate the information learned about cancer research. For myself I am concentrating on ovarian cancer research lectures and poster sessions. I want to thank Dena O’Malley and the Center for Cancer Survivorship at the Cancer Institute of New Jersey for being my dissemination partner.

I have been attending webinars on Biomarkers, Drug Development and Cancer Pathways and reading manuals on genomics. At times I felt like I was back at Rutgers in the Intro to Biochemistry class. I needed to relearn how cells replicate, the structure of DNA and RNA, and clinical trial design. I admit It has been a bit of a challenge . Chemobrain seems to have affected how I learn and recall information. It requires me to listen, take notes, reread and review the slides from the lecture and still at times it takes me a long time to recall the proper names. Throw some unique acronyms on top of it and at times I feel I am talking alphabet soup. But I think the extra effort will pay off in the days ahead.

I have found recently that the media, internet , TV and print , tends to run with stories of agents that can cure cancer or raise or reduce risk without putting the results in perspective. This may raise hopes for patients when in fact the drug/agent is many years away from being used on humans. Rather we should ask: Was the research on animals or humans? Has the drug/agent finished clinical trials?How large was the study? How expensive is the agent/drug/screening test. How long until the agent is available?Many times groups push for a screening test for the general population that really does not fit the criteria of being specific and sensitive. My plan is to post an update every day from the Conference but in the weeks ahead I will follow up with more detailed information which hopefully will answer the questions I posed above .

The other bonus of this trip is meeting other research advocates from around the world.

Can’t wait for the sessions to begin tomorrow!

Dee

Every Day is a Blessing.

Chicago Here I Come

I'm thrilled to have been accepted as a Scholar in the Focus on Research program developed by the Research Advocacy Network. That means that I will be traveling to Chicago in early June to attend the ASCO Annual '11 Meeting.

A special thank you goes to the Center for Cancer Survivorship at the Cancer Institute of New Jersey for agreeing to be my dissemination partner.

I have papers to write and online classes to take before I go to Chicago but I am looking forward to meeting other research advocates and to learn the latest in ovarian cancer research.

Dee

Every Day is a Blessing! I am blessed to be given opportunity to become a better OC advocate.