PRIVATE PATIENT ADVOCATES, INC.
FOUNDER AND PRESIDENT
Janet Edwards, BS, BCPA – 682-419-7686
PATIENT ADVOCACY BIOGRAPHY
Patient advocacy background: Janet is a five-year Invasive Lobular Carcinoma (ILC) survivor, a sub-type of breast cancer that accounts for 10-15% of all breast cancer and impacts approximately 44,000 individuals annually. Upon completion of a partial mastectomy, sentinel node dissection and 20 rounds of radiation, she discovered that a specific adjuvant therapy for ILC was non-existent. Instead, it was 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 she was taught the 6-step scientific approach to problem solving at a very young age, she conducted extensive research to advocate for herself and achieve patient-centered care.In addition to breast cancer, she also has experienced a number of health issues that required her to coordinate her care among 11 different specialists within four university/hospital systems.Her corporate career as an executive in supply chain management brings the additional skills of cross-functional collaboration, negotiation, and communication.Every patient deserves patient-centered care, regardless of diagnosis. As an extrovert, it is easy for Janet to present her findings and preferences to her medical team. Her goal is to assist others in finding their voice to achieve patient-centered care through research, exploration of treatment options, communication with their medical team(s) and understanding of the financial and medical impact of those choices. To accomplish these goals, she recently formed Private Patient Advocates, Inc., a Texas Corporation.
Patient advocacy experience: 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 Advocacy Program (RAP) – 2021 – Present 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. Recently, Janet reviewed and scored a UTSW grant application. Her role is to represent the patient perspective.
Research Patient Advocate for LBCA ILC Grant 2021 – UTSW was awarded a grant for their glucocorticoid research for ILC. Janet was the patient advocate for that research team and wrote the lay abstract and letter of support for their grant application.
Patient and Family Advisory Council – 2020-2021 - Janet was recruited to become a member of the Patient and Family Advisory Council (PFAC), whose input is provided to the leadership of the Simmons Cancer Center at UTSW, after presenting research to leadership that demonstrated ILC patient treatment is based on IDC and why that might not be the most effective protocol for ILC.
2020 – Present - Lobular Breast Cancer Alliance (LBCA)Member of LBCA and participant of their Research and Advocacy Committee. Participates in various projects with the goal of educating patients and clinicians on the unique properties of ILC. 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, 2027Strategic Sourcing: Principal/Director/Sr. Director – 2002-2024
Patient advocacy experience: 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 Advocacy Program (RAP) – 2021 – Present 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. Recently, Janet reviewed and scored a UTSW grant application. Her role is to represent the patient perspective.
Research Patient Advocate for LBCA ILC Grant 2021 – UTSW was awarded a grant for their glucocorticoid research for ILC. Janet was the patient advocate for that research team and wrote the lay abstract and letter of support for their grant application.
Patient and Family Advisory Council – 2020-2021 - Janet was recruited to become a member of the Patient and Family Advisory Council (PFAC), whose input is provided to the leadership of the Simmons Cancer Center at UTSW, after presenting research to leadership that demonstrated ILC patient treatment is based on IDC and why that might not be the most effective protocol for ILC.
2020 – Present - Lobular Breast Cancer Alliance (LBCA)Member of LBCA and participant of their Research and Advocacy Committee. Participates in various projects with the goal of educating patients and clinicians on the unique properties of ILC. 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, 2027Strategic Sourcing: Principal/Director/Sr. Director – 2002-2024