DoD Ovarian Cancer Research Program

Patient Advocates: Partnering Toward a Cure

JUDI GORDON, SHARE, Consumer Reviewer: I was diagnosed with ovarian cancer in April of 2000, but I was very lucky and I was treated very aggressively with surgery, chemotherapy, and radiation, and I'm really happy to say that I've been in remission ever since.

KAREN MASON, Ovarian Cancer National Alliance, Consumer Reviewer: Ten years ago I was diagnosed with a late-stage ovarian cancer, stage 3-C. I've been very fortunate not to have had a recurrence. Most women diagnosed at my stage would have a recurrence within two years, and most would die within five.

PATRICIA GOLDMAN, Ovarian Cancer National Alliance, Consumer Reviewer: I'm an ovarian cancer survivor happily of 19 years. That unfortunately is not the case for many people. And child of the women's movement, I thought it was important to get out and advocate for not only myself but for other women, and find the support that's available through ovarian cancer advocacy.

GORDON: I attended a program that the Ovarian Cancer National Alliance had-a Leadership Program-and at that time I heard about the OCRP Program, and I was interested in what they did, which was having patient consumers be a part of the process of figuring out which the best research would be to fund.

GOLDMAN: It was quite unusual in many grant-making organizations to have patient advocates involved, so that's what's been very special about the Department of Defense Program.

MASON: Nobody uses patient advocates quite like the DoD. And they were the first organization to use them-it's just incredible. The Integration Panel is comprised of 13 to 15 people; we have three patient advocates, and the other 12 are M.D.s, Ph.D.s, and we all have a totally equal voice, whether it comes to voting or discussion, and they just so take into account everything that you have to offer.

GOLDMAN: The scientists are wonderful partners for us and we hope, in reverse, that we are good partners for them, but one of the things that's frequently involved in some grants is, are you going to be able to find people who will be willing to go into clinical trials, so we can say this is the kind of research proposal that our people are interested in.

GORDON: We're also looking to make sure that the proposals are not coming up with very small benefit for great cost, and I mean that in the way that there's such toxicity in the treatment that women get today, that they suffer from that. And it's not enough just to fund something that is going to maybe bring small benefit but at great cost to the patient. And I think we, as consumers, can put our finger on that.

MASON: About three years ago I made a recommendation to the Integration Panel that if we were truly out-of-the-box-type thinkers looking for such areas of innovation, that we would be blinded in the early application process to the researcher's name and the institution from which they came. And they listened to me, and the next year for the pre-applications, the early application process, the blinding process was on. And that was like, you know, amazing!

GOLDMAN: I think it's a very good thing for consumers to get involved with the program. There's a great sense of support, and we learn from each other.

MASON: I do tell other survivors to get involved. I highly recommend it. It's very empowering, and we all want to feel like we play a small part in changing the landscape of ovarian cancer. And there's no better way to do it than working with the DoD, because you are so heard in what you say and so appreciated.