Janet Edwards, BS, BCPA – 682-419-7686
PATIENT ADVOCACY BIOGRAPHY
Patient advocacy background: I am six-year Invasive Lobular Carcinoma (ILC) survivor, a sub-type of breast cancer that accounts for 10-15% of all breast cancer and impacts approximately 45,000 individuals annually. Upon completion of a partial mastectomy, sentinel node dissection and 20 rounds of radiation, I discovered that a specific adjuvant therapy for ILC does not exist in the United States. Instead, ILC is treated based on the more common form of breast cancer, Invasive Ductile Carcinoma (IDC). As an individual with an insatiable curiosity, whose father was a scientist, I was raised with the principle of making decisions based on facts and data. I conducted extensive research to advocate for herself and achieved patient-centered care and that was the start of my breast cancer patient and research advocacy.In addition to breast cancer, I experienced a number of other health issues that required coordinating care among 11 different specialists within four university/hospital systems. Most of them were within the same university teaching hospital, but I discovered they do not communicate across department lines. Each specialist treated the isolated part for which they specialized, necessitating updates across department lines from me. Independent patient advocates can assist with this process. The result is reduced stress for patients, the entire medical team stays informed, regardless of department or hospital system affiliation.As a retired supply chain management professional, my career required the skills of cross-functional collaboration, negotiation, and communication.Every patient deserves patient-centered care, regardless of diagnosis. As an extrovert, it was easy for me to present research findings and preferences to my medical team.
My goal is to improve our healthcare system, reduce expenses and assure patients have the opportunity to make educated decisions through the insertion of independent patient advocates immediately after diagnosis and before the patient's first appointment with their specialist.
Patient advocacy experience:
2025 Congressionally Directed Medical Research Program (CDMRP), Breast Cancer Research Program (BCRP) Community Reviewer for breast cancer applications to the Department of Defense.
2025 Earned - Prior Authorization Certified Specialist - The Accreditation Council for Medical Affairs (ACMA), took 14 courses, each with its own exam and a 3-hour final to become certified.
2025 Susan G. Komen - Office of Public Policy Ambassador - Engage with state and federal legislators regarding breast cancer research funding and policy.
2025 Susan G. Komen - Advocates in Science - Scholarship recipient to the Northwestern Medical University's Lynn Sage Breast Cancer Symposium in October 2025.
2024 Board Certified Patient Advocate - Patient Advocate Certification Board - passed 3-hour proctored exam to become certified. Maintenance of this certification requires meeting CEU requirements from approved courses.
2024 Grant/Stipend Recipient: Susan G. Komen – Advocates in Science (AIS) - Received full scholarship to attend 2024 Lynn Sage Breast Cancer Symposium in Chicago in October.
Lobular Breast Cancer Alliance (LBCA) – Travel stipend recipient to attend 2024 International Invasive Lobular Breast Cancer Symposium in Belgium in September.
2020 – Present - University of Texas Southwestern (UTSW): Research on ILC presented to my care team resulted in an invitation to join their Patient and Family Advisory Council (PFAC). Participation on that team ended when I became an inaugural member of their Research Advocacy Program (RAP) in 2021. Through this team, the Simmons Comprehensive Cancer Center leverages community input to ensure that basic and translational research is relevant to and aligned with community needs. Participation includes support for grant applications from UT Southwestern to grant agencies with Lay Abstract Review and creation of the Patient Advocate Letter of Support. One such application in 2021 resulted in the award of a grant for ILC research. The inverse of grant the application process is also used as I have reviewed grant applications to UT Southwestern from those seeking grant funding from them. In addition, this team collaborates with physician researchers as requested to provide input from the patient's perspective. 2019 - Present - Lobular Breast Cancer Alliance (LBCA) Research and Education Committee. LBCA has the single largest repository of research on ILC. and their goal is to educate patients, researchers and physicians on the unique nature of the disease. 2023 Dana Farber Breast Cancer: Guest attendee of New Horizons, Current Controversies course at the recommendation of LBCA.
2021 – Present Susan G. Komen - Advocates in Science: Member of the Susan G. Komen Advocates in Science (AIS) program. As such, she participated in patient advocate training session associated with the 2021 Lynn Sage Breast Cancer Symposium. A requirement of participation was to write three research papers related to breast cancer. The topics Janet chose were: Incorporating Immunotherapy into Practice, Prevention and Treatment of Brain Tumors and Disparities in Breast Cancer – Strategies to make Progress.
Education and Career:Bachelor of Science, Business Management - LeTourneau University, Summa Cum LaudeBoard Certified Patient Advocate, April 15, 2024 – April 14, 2027 Prior Authorization Certified Specialist - June 10, 2025
2020 – Present - University of Texas Southwestern (UTSW): Research on ILC presented to my care team resulted in an invitation to join their Patient and Family Advisory Council (PFAC). Participation on that team ended when I became an inaugural member of their Research Advocacy Program (RAP) in 2021. Through this team, the Simmons Comprehensive Cancer Center leverages community input to ensure that basic and translational research is relevant to and aligned with community needs. Participation includes support for grant applications from UT Southwestern to grant agencies with Lay Abstract Review and creation of the Patient Advocate Letter of Support. One such application in 2021 resulted in the award of a grant for ILC research. The inverse of grant the application process is also used as I have reviewed grant applications to UT Southwestern from those seeking grant funding from them. In addition, this team collaborates with physician researchers as requested to provide input from the patient's perspective. 2019 - Present - Lobular Breast Cancer Alliance (LBCA) Research and Education Committee. LBCA has the single largest repository of research on ILC. and their goal is to educate patients, researchers and physicians on the unique nature of the disease. 2023 Dana Farber Breast Cancer: Guest attendee of New Horizons, Current Controversies course at the recommendation of LBCA.
2021 – Present Susan G. Komen - Advocates in Science: Member of the Susan G. Komen Advocates in Science (AIS) program. As such, she participated in patient advocate training session associated with the 2021 Lynn Sage Breast Cancer Symposium. A requirement of participation was to write three research papers related to breast cancer. The topics Janet chose were: Incorporating Immunotherapy into Practice, Prevention and Treatment of Brain Tumors and Disparities in Breast Cancer – Strategies to make Progress.
Education and Career:Bachelor of Science, Business Management - LeTourneau University, Summa Cum LaudeBoard Certified Patient Advocate, April 15, 2024 – April 14, 2027 Prior Authorization Certified Specialist - June 10, 2025