Jane Perlmutter, PhD, MBA, has been honored with the Patient Advocate Award for her decades-long dedication to peer support for newly diagnosed patients and advancing cancer research advocacy.
Dr. Perlmuttter’s commitment to supporting patients with cancer and expanding the role of patient advocates in clinical trials came as a direct result of her own diagnosis with cancer almost 40 years ago.
“I thought it was a death sentence,” she said, reflecting on her first breast cancer diagnosis and the subsequent support she received from a 17-year breast cancer survivor and others who gave her hope. “It was so supportive and empowering,” she added. “My early advocacy was all in peer support, and it was really to pay that back.”
She had a recurrence of breast cancer in the 1980s and two more recent cancers.
Dr. Perlmutter will receive her award on June 4 at the 2023 ASCO Annual Meeting and participate in a roundtable discussion on mentoring and career development with ASCO’s other award recipients.
Dr. Perlmutter’s advocacy has evolved over the years from peer support to research advocacy as new opportunities arose in the last decade. Her formal training in cognitive psychology and experimental methods, computer and information science, and business were immense assets, and her diverse professional roles in academia, not-for-profit R&D, corporate senior management, and independent consulting have served her well in key positions on pivotal clinical trials.
“I know how to work in organizations,” she said, “and I’m comfortable bickering back and forth with academics.”
Advocacy in Clinical Trials
Dr. Perlmutter has been an advocate member of National Cancer Institute’s Breast Cancer Steering Committees and the Translational Breast Cancer Research Consortium. She is especially interested in innovative, patient-centric trial designs that can accelerate the pace of progress, serving on the Steering Committees and as the lead advocate on the I-SPY 2 and TAPUR trials, two groundbreaking master protocol trials.1,2
Over the years, Dr. Perlmutter has developed aphorisms that summarize her advocacy learnings. “Involve patients early and often” reflects the successful approach of patient-centric trials such as I-SPY 2, TAPUR, and others.
“Patient-centric clinical trials not only deliver patient-centric health care but also ensure that participants understand the trial goals, what is expected of them, and the voluntary nature of their participation,” she said.
Dr. Perlmutter is currently on the National Cancer Institute’s Cancer Imaging Steering Committee and the Alliance for Clinical Trials in Oncology’s Data and Safety Monitoring Board and Cancer Control Executive Committee. Additionally, she has been involved in peer support for newly diagnosed patients with cancer and has served on guideline committees for ASCO, the American Society for Radiation Oncology, and the Society for Integrative Oncology.
Dr. Perlmutter has also been involved in health advocacy beyond cancer, including the Clinical Trials Transformation Initiative, Friends of Cancer Research, and the Reagan-Udall Foundation for the U.S. Food and Drug Administration. She is past chair of the Patient-Centered Outcomes Research Institute’s Advisory Panel on Patient Engagement and is a current member of their Advisory Panel for Clinical Trials. She has developed and delivered a variety of advocacy training, been a faculty member at the ASCO/AACR Methods in Clinical Cancer Research Workshop, and is often asked to present the patient/advocate perspective at professional meetings.
Creating a Pipeline of Advocates to Address Future Challenges
Successfully preparing advocates to engage in the research process must be a collaborative undertaking between current and seasoned research advocates and the organizations that engage them. The number of seasoned advocates is limited, as is an understanding of their role and contributions. Hence, Dr. Perlmutter says creating formal opportunities to engage advocates is key, that applications for research should increasingly mandate advocate involvement, and that organizations requiring advocate involvement should provide the necessary guidance to do so successfully.
These could include a “matching service” to help researchers identify qualified advocates, defining expectations about the role of the research advocate, and potentially establishing a budget to support advocate training, meeting attendance, and compensation as appropriate.
Looking to the future, Dr. Perlmutter believes that advocate engagement will advance further with initiatives to increase the diversity of advocates and include patients of all ethnic, gender, socioeconomic, and geographic backgrounds.
She also proposed providing compensation for advocates, noting that although most advocates are volunteers—including in I-SPY 2—a best practice is to compensate them for their involvement, which not only increases their status in a project but also facilitates the involvement of more diverse advocates.
The ASCO Patient Advocate Award serves to acknowledge individuals whose contributions have had an exceptional impact on public awareness about cancer, its causes, cures, or treatment and activities that result in additional legislative or fiscal support for cancer research, treatment, prevention, or care.
Dr. Perlmutter said she was “humbled” to receive the award and praised the efforts of countless advocates who have added a human face and sense of urgency to cancer research.
- Barker AD, Sigman CC, Kelloff GJ, et al. I-SPY 2: an adaptive breast cancer trial design in the setting of neoadjuvant chemotherapy. Clin Pharmacol Ther. 2009;86:97-100. https://doi.org/10.1038/clpt.2009.68.PubMed
- American Society of Clinical Oncology. TAPUR: Testing the Use of Food and Drug Administration (FDA) Approved Drugs That Target a Specific Abnormality in a Tumor Gene in People With Advanced Stage Cancer. https://www.tapur.org/. Accessed March 7, 2023.