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Research for Young Survivors -- Heard in the Halls: Voices From the 2018 San Antonio Breast Cancer Symposium
Kelly Owens, Ph.D.
December 5, 2018

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Kelly Owens, director of education and research for FORCE, explains the organization's XRAYS (eXamining the Relevance of Articles for Young Survivors) program.

Running time: 3:44

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This podcast is made possible by the generous support of Lilly Oncology.

Kelly Owens: Hi! I’m Kelly Owens. I am the director of research and education with FORCE, which is Facing Our Risk of Cancer Empowered. So we’re a patient advocacy organization focused in particular on hereditary breast cancers that are frequent in the breast cancer community.

I am involved in particular in working on the XRAYS program, and that program looks at examining articles for young survivors, and it is focused on looking at things in the media that come up for people as being confusing or being misleading or spins that aren’t clear to people. And we go back and look at the original research studies and what that research said and lay that out for folks to look at in a way that hopefully is a little more accessible than the original research, which can be a little jargon-filled and a little convoluted at times, and try to lay that out in a clear way and then clarify what the media article was about, whether there might be inaccuracies or things that are open to misinterpretation.

And so we rate research studies on how good the quality of science is and how relevant that is for breast cancer survivors or previvors, who are individuals who are at risk because they have a genetic mutation in the breast cancer gene but don’t yet have cancer, so they’re looking at what their choices are and decision making.

And part of our run-down of research is also to say, what of this research is really clinically relevant for the patient? What can they take to their doctor and say, “Is this appropriate for me? Should I think about genetic testing,” or, “I have this genetic test result, what does that mean in terms of my decision making?” So they can have a more collaborative process in their health care, put a little more control in the patients’ hands.

And then also, because a lot of things in the media get passed around on social media and friends and helpful relatives who send you articles and things, it’s nice to have something that can back you up when you say, “Well, I don’t think that’s the full story with this piece,” or, “There’s this other aspect.” Because I think things that are catchy as headlines that are either, “We cure cancer in 10 days,” or, “This is the doomsday gene,” which I’ve seen as a headline. These things are both scary and frightening and not accurate, and the story is usually far less glamorous and a little more incremental in science, so we try to convey that as well.

We are expanding our program to talk more about metastatic breast cancer in the next year, that will start at the beginning of the year, to get a little more coverage to that, and down the road to pancreatic, prostate, and ovarian cancers, which are cancers common if you have mutations in the genes that cause breast and ovarian cancers. So that makes sense for to try to address the whole individual and what they’re doing.

So that program has been really interesting for me to work with. I come from a background as a research scientist, so I’ve worked in the cancer field for a while genetics and hearing loss, and it’s nice to do something where I can have a direct impact on people. The science I did I hope will have a direct impact, but it’s a long road from basic research where I began to something that is effective for patients. So I’m really excited to be in this place where I can explain my passion about the science to people in a way that makes it useful to them on a daily basis.

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