Living with cancer blog

Patient research advocates make a difference

By Sheryl M. Ness, R.N. February 25, 2012

For this week's blog post, I asked Patricia Haugen, a patient advocate at Mayo Clinic, to discuss patient research advocacy.

What inspired you to become an advocate for cancer research?

I'm a survivor of inflammatory breast cancer, diagnosed in 1997. I have a strong family history of cancer, and know how cancer continues to impact all of us, in spite of billions of dollars and decades of research.

I served as a consumer reviewer for the Department of Defense Breast Cancer Research Program (DOD BCRP) a few years after my cancer diagnosis. Through that experience I saw how educated, engaged consumers can make a meaningful contribution to the research process. I was energized to continue as a research advocate after attending the National Breast Cancer Coalition Project LEAD science training classes for advocates.

I continue as a reviewer for the DOD BCRP, and have also reviewed for the California Breast Cancer Research Program and the American Cancer Society, and serve as an Institutional Review Board member, and as a Mayo breast and ovarian Specialized Programs of Research Excellence (SPORE) advocate.

What has the role of being a research advocate taught you?

I've learned that it's important to always question whether a research project will make a real difference and in what way, and that we can make a difference. As research advocates, we need to continue to learn and to keep our knowledge and understanding current.

Any words of wisdom for people thinking about participating in a clinical trial?

  • Be proactive, ask your doctor about all of your treatment options, including clinical trials, no matter where you are on your cancer journey.
  • Ask your doctor about the benefits and risks of the clinical trial, and also ask your doctor to compare the benefits and risks to other treatment options.
  • Do your own research and get a second opinion.

What can the medical community do to make cancer clinical trials better for patients?

We need well-designed clinical trials that answer important questions, and that are available and accessible to patients. We need patient appropriate information that can help us understand our treatment options and how they compare.

What other thoughts would you like to share with survivors?

There are many opportunities and needs for cancer advocacy; research advocacy is just one of them. There are many ways to make a difference.

Please share your thoughts and comments on patient research advocacy.

Follow me on Twitter @SherylNess1. Join the discussion at #livingwithcancer.

With

Sheryl M. Ness, R.N.

Follow on Twitter: @SherylNess1

10 Comments Posted

Feb. 25, 2012