Learn about Research Advocacy

What is a research advocate?

A research advocate partners with breast cancer researchers to advance research to improve patient outcomes and ultimately benefit all patients with breast cancer and lobular breast cancer.

Why do we need research advocacy for lobular breast cancer?

Lobular breast cancer is understudied, and needs more research to advance our knowledge of lobular breast cancer and refine treatments and therapies for patients. There are currently very few clinical trials and studies specifically looking at Invasive Lobular Cancer (ILC) and how ILC may respond to common breast cancer treatments. Many ongoing clinical trials and studies make no distinction between ILC and other estrogen positive breast cancers, potentially resulting in missed opportunities to better understand our disease and refine treatments.

What role can a research advocate have in shaping clinical trials and studies?

Breast cancer research advocates can make valuable contributions to set research priorities, improve study design, and communicate research findings to patients. ILC research advocates can make an important impact to scientific research and clinical trials by:

  • Contributing the lobular breast cancer perspective to research design and trial and study execution.
  • Partnering with researchers to help get ILC trials and research successfully funded, accrued and completed.
  • Participating in research grant peer review and other institutional research advocate opportunities to help ensure the most impactful research is funded.

What training is needed to become a research advocate?

Different opportunities require different levels of training and advocate education. Becoming an effective research advocate in the leading patient advocacy programs can often require gaining a basic understanding of the science behind cancer and its treatment. Interested advocates can undergo patient-oriented training in scientific methodology, research design, epidemiology, basic statistics and other areas so they can make knowledgeable contributions to research and ensure clinical trials and studies are patient focused with an eye on outcomes.

How can you identify opportunities to volunteer as a research advocate?

Advocates can work directly through different organizations or cancer research institutions to partner with researchers as advisors on clinical trials or participate in research grant review. Learn more and find a resource list of patient advocate opportunities at lobularbreastcancer.org/researchadvocacy.