Learn About Research Advocacy

Research advocacy focuses on involving advocates in cancer research to make sure research reflects patient needs and outcomes. A research advocate can be a patient, caregiver, survivor or co-survivor who is interested in the science behind breast cancer research.

LBCA encourages interested patients with ILC and their loved ones to get involved in research advocacy on their own and in their own communities. There are many kinds of research advocacy activities that might interest you.

After reviewing these materials, please contact us to learn more about research advocacy.

Research Advocates Partner with Breast Cancer Researchers

The involvement of advocates in cancer research is crucial, and often it is a requirement for research applications to be considered for funding. When advocates partner with researchers they can improve patient outcomes and ultimately benefit all patients with breast cancer and lobular breast cancer. Research advocates can make valuable contributions to set research priorities, improve study design, and communicate research findings to patients. Advocates can partner with researchers at local institutions and participate in grant review to help ensure that the most impactful research is funded. Research advocates with lobular breast cancer are needed to make sure research reflects the needs of patients with ILC.

Research Advocate Training is Available

Research advocacy opportunities require varying levels of experience and education. There is a wealth of resources on the LBCA website and elsewhere on the web including patient-oriented training opportunities through which advocates can about the science behind cancer, its treatment, types of research, and effective research advocacy.

  Download and explore research advocacy training and grant review opportunities, and tips for how to get involved.

 Advocacy Education Webinars

Susan G. Komen Advocates in Science hosted a webinar geared towards research advocate in their Advocates in Science program and new advocates interested in lobular advocacy.  Learn about Komen’s Advocates in Science and watch the webinar.

LBCA advocates presented a webinar through SHARE Cancer Support that included an overview of advocacy and how to get involved.  View the advocacy education webinar.

Frequently Asked Questions 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 and explore questions and answers about how to find and get involved in research advocacy with our Research Advocacy Resource List.

To Keep in Touch with Other Advocates Spreading the Word about ILC or Engaged in ILC Research Advocacy Sign-up at: lobularbreastcancer.org/volunteer.