Research Advocacy Toolkit
The Lobular Breast Cancer Alliance (LBCA) empowers patients, caregivers, clinicians, and researchers to educate others about invasive lobular carcinoma (ILC) and support ILC research.
Please check back for regular updates to this toolkit.
Research advocacy focuses on involving advocates in cancer research to make sure it 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, also known as lobular breast cancer, 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. These opportunities include but are not limited to:
- Taking part in a science of breast cancer training program for patient/research advocacy
- Contributing the lobular breast cancer perspective to research design and execution of research and clinical trials
- Partnering with researchers to help them attain grant funding for ILC trials and research
- Identifying and joining local patient advocacy groups
- Participating in research grant peer review and other institutional research advocate opportunities to help ensure the most impactful research is funded.
These opportunities require varying levels of experience and education. We have assembled a list of many of the most helpful resources here in our ILC Research Advocacy Toolkit to help enhance your research advocacy skills and knowledge, and give you some tips for getting involved.
After reviewing these materials, if you wish to get involved as a volunteer to support LBCA’s research advocacy efforts, please contact us to learn more and sign up.
Research Advocates Partner with Breast Cancer Researchers*
The involvement of advocates in cancer research is crucial, and often 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 reviews 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.
*Are you interested in becoming an ILC research advocate? Read more about the advocate research registry and sign up using the LBCA ILC research advocate registry form.
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. This includes patient-oriented training opportunities through which advocates can learn 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.
Research Advocacy Education Webinars
Susan G. Komen Advocates in Science hosted a webinar geared toward research advocates 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 have presented two webinars, one through SHARE Cancer Support and one at the NBCC Leadership Summit that included an overview of advocacy and how to get involved.
LBCA hosted an Advocate Chat in May 2021 focusing on finding local research advocacy opportunities. Featuring Liz Frank, lead advocate for the Dana Farber/Harvard Cancer Center Breast Cancer Advocate Program, the program discusses what research advocacy looks like at the local level, how to identify opportunities for engagement with research happening at institutions near you, and where and how to connect with other advocates in the field.
Frequently Asked Questions About Research Advocacy
Q: What is a research advocate?
A: 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.
Research advocacy puts the beneficiary of the research – the person with ILC – at the forefront. Breast cancer patients and survivors are in a unique position to support cancer research through active participation in research design, review, and patient recruitment. Since researchers may not have direct contact with patients, it is important for advocates to have the opportunity to provide the patient perspective. Their contributions help make scientific advances offer greater benefit to people with cancer.
Q: Why do we need research advocacy for lobular breast cancer?
A: Lobular breast cancer is understudied, and needs more research to advance our knowledge of ILC and refine treatments and therapies for patients. There are very few clinical trials and studies specifically looking at 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 the disease and refine treatments.
Q: What training is needed to become a research advocate?
A: 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.
Q: How can you identify opportunities to volunteer as a research advocate?
A: 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 Resources and Q & A.
To keep in touch with other advocates spreading the word about ILC or engaged in ILC research advocacy sign-up at lobularbreastcancer.org/volunteer.