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Old 01-09-2016, 10:03 AM   #1
Debbie L.
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Advocacy education and participation opportunities

I'm starting this new thread for us to post programs and opportunities that we are aware of, for interested patients to educate themselves and participate in patient advocacy. If possible, include links to the programs.

The National Breast Cancer Coalition's Project LEAD

Komen's Advocates in Science

AACR's Scientist-Survivor Program

Research Advocacy Network's Advocate Institute

ASCO's Patient Advocate Program (not exactly education, but offers support when attending the conference)

Alamo Foundation (again, not so much an educational program, but offers support for attending SABCS)

Debbie Laxague
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Old 01-10-2016, 11:01 AM   #2
agness
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Re: Advocacy education and participation opportunities

Here are some links for places that patients can get involved in research:

Metastatic Breast Cancer Project
mbcproject.org

Army of Women
https://www.armyofwomen.org/

Health of Women Study
https://www.healthofwomenstudy.org/


Where to get free help:

Cancer Commons
This guy founded a non-profit to help cancer patients gain research assistance free of charge.
https://www.cancercommons.org/home
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Old 01-15-2016, 05:32 PM   #3
Debbie L.
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Re: Advocacy education and participation opportunities

Thanks for chiming in, Agness.

This essay from NBCC's Fran Visco appeared today in the Huffington Post. It's worth a read. I'll try to copy/paste it below, but if you follow the link it will look nicer.

NBCC is my favorite advocate organization, for many reasons. But as I tried to include in my first post, there are many organizations that offer advocates education in the science and the research process. I could say more about why this is important, but Fran said it better so I'll leave you to read the essay:


"Across the country, people run, walk, dine out, buy "stuff" and write checks to support breast cancer research. All of this is great. But what exactly is "breast cancer research?" Where does the money go? Who decides which questions are asked? How do we measure success? All of these are incredibly important questions. If we really want to end breast cancer and save lives, it will take more than just raising and spending more money on research. We need a thoughtful, strategic approach to making certain that money is well spent. We need to know that the end result benefits women and men at risk of and with breast cancer, rather than just supporting institutions, individual scientists and drug companies.


At the National Breast Cancer Coalition (NBCC), we know that advocates trained in the science of breast cancer, women and men who are outside the system of science and research, should lead the way. That might sound strange--lay advocates setting a scientific research agenda? We have proven it works. Educated advocates like the ones at NBCC are the only ones with no agenda other than to end breast cancer. Not get published, or promoted or make a profit. Just save lives.


Try to look up how many institutions around the country are working on breast cancer research. Or how many thousands of scientists are doing that work. You can't do it. Nor can we easily find out what they are doing in breast cancer. There is little transparency in breast cancer research, beyond piecing together federal funding and what information you can find on private grants and associations. The federal government appropriated more than $800 million last year for breast cancer research. It is estimated that private philanthropy exceeds hundreds of millions of dollars each year. There is no coordination of all of this. Now, I am not suggesting there should be coordination of science. Having all researchers work in lockstep would send us down one road and it may be the wrong one. There would be no room for innovation or really "wild ass" ideas. We need diversity of approaches, replication of findings, innovation and even some incrementalism. But we don't need so much of it. We do need some segment of all of this working to answer questions that are important to people. And we must have transparency and accountability.


The current world of science rewards publication and grant funding begets more grant funding. So the propensity of researchers is to do what will get published and what will get funded--not necessarily what will save lives because, unfortunately, these are not always the same thing. An individual scientist, or her team, at one institution most often is not collaborating with teams at other institutions, who may have a different way of approaching the same problem. Now, scientists will tell you of course they collaborate. Maybe we define it differently. We define collaboration as an open exchange of ideas; sharing of tools, technology and knowledge; learning from one other and moving forward as partners to answer a big question. We haven't seen much of that. How much of that research funding we have walked and raced to raise is spent on that type of collaboration?


Do we know what questions are being asked? Do we know if those questions are important? We can know. I recently read a posting from a breast cancer survivor who claimed that a patient cannot understand science and any attempt to read about it was akin to hearing "zebras clumping by all the time." I immediately thought about the iconic Barbie doll that, when you pulled the string, you heard, "Math class is tough." Back in 1992, people rightfully pointed out how offensive this was and demeaning to women. We can do math. We can understand scientific articles; we can help decide what is important. It is offensive to suggest otherwise.


One of NBCC's signature projects is to train advocates at Project LEAD® Institutes and Workshops in the science of breast cancer and on research methodology. They learn basic terminology, foundational concepts, and a way to think critically about science and gain the confidence to ask hard questions. LEAD graduates have gone on to analyze and influence the science itself. Working together with scientists, advocates have influenced how researchers view the significance of their scientific questions, how research designs might impact participants and why results need to be important endpoints and not just extend life for a week or two.


In 1992, NBCC successfully advocated for unprecedented federal funding for breast cancer research: hundreds of millions of dollars for the newly-created U.S. Department of Defense Peer Reviewed Breast Cancer Research Program. As part of this new program, I worked with scientists and program leaders to facilitate trained advocates having a seat at the peer review and programmatic tables. Many Project LEAD® graduates have since sat at those tables to review scientific research proposals and to set the research agenda.


As part of NBCC's Breast Cancer Deadline 2020®, we launched the Artemis Project®, which is our research work on primary prevention, or stopping women and men from getting breast cancer in the first place, and prevention of metastasis, or preventing women and men from dying of it. We are making progress on these two fronts in large part because they are advocate-led.



Math class may be tough for many men and women. That does not mean it creates a barrier. Science can be accessible to all of us--it's not just for scientists--and it certainly can sound clearer than zebras clumping. Advocates can understand the science of breast cancer and help determine what research questions should be answered. We've made progress in getting more trained advocates to the research table. Now we need to put more advocates--who answer to no one, no institution and no industry but to their desire to end this disease--in charge of setting the breast cancer research agenda."
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Old 02-29-2016, 05:18 AM   #4
sarah
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Re: Advocacy education and participation opportunities

Thank you Debbie and Agness, what a great idea.
health and happiness
sarah
founding member Cancer Support Group for English Speaker 06 in south of France
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