The 10th Canadian conference on ovarian cancer research (CCOCR) was held in Ottawa in May. The conference involved participation from over two hundred researchers and trainees involved in all aspects of ovarian cancer research from Canada, the US, and even Brazil. In addition to scientists, clinical researchers, graduate students, and fellows, this year, the CCOCR brought the patient perspective to the conference, including patients like Donna Pepin, an ovarian cancer survivor and patient advisor for Ovarian Cancer Canada (OCC).
In 2006, Donna Pepin, a resilient and inspiring woman from Toronto, was diagnosed with ovarian cancer. You may recall Donna was featured in the February 2020 issue of Cancer Chat telling of her role in the OCC initiative to lobby the Federal Government for money to support ovarian cancer research. They won the amendment, and in March 2019, the Federal Government announced a $10 million investment to support Canadian ovarian cancer research. Donna continues volunteering with the OCC and is the voice of ovarian cancer patients across Canada.
Donna has a rare subtype of ovarian cancer called low grade serous ovarian cancer (LGSOC), which is common among younger women. Upon diagnosis, Donna underwent first-line treatment consisting of chemotherapy with carboplatin and paclitaxel, used for treating all ovarian cancers. Unfortunately, her tumours did not respond. What is now being realized is that one-size-fits-all treatments for ovarian cancer do not work. Ovarian cancer is now regarded as a disease with many subtypes. Research has shown that LGSOC are slow-growing indolent tumours that respond poorly to chemotherapy. During the interview, Donna told me, “The only thing worse than an ovarian cancer diagnosis is a diagnosis of rare ovarian cancer, like low grade serous. But, OCC aims to change the lives of women by finding new treatments for these rare diseases.” An archaic treatment paradigm highlights an urgent unmet need for treatment strategies for rare cancers.
Unbeknownst to her doctors in 2006, Donna’s tumour cells carried an activating KRAS mutation often observed in LGSOC, which contributed to chemo-resistant disease. In 2006, Donna was prescribed letrozole, a medication used for the treatment of breast cancer, which starves the tumours of estrogen required for growth. Fortunately, Donna’s tumours shrunk by over 20% and have remained stable.
Donna’s current role with OCC involves developing patient engagement. “In the past, the term ‘patient engagement’ was just a buzzword, but now, it’s happening in real-time,” she says. Donna is the co-lead of OCC’s Patient Partners in Research (PPIR) team, which refers to the inclusion of cancer patients or public laypeople affected by cancer as partners in the various stages of the research process. Patients are embedded in decisions affecting research which aims to increase trial efficacy. Donna enforces the essentiality of understanding the biology to the other patient partners to enable effective communication between PPIR and scientific panel members. Patient partners must undergo basic biology training and an understanding of cancer literature, completing course modules on the science of cancer.
The program brings the lived experience of the patient to research and medicine. In a recent initiative, the OCC has partnered with the Cancer Research Society (CRS) to include patient partners in the grant review process. Alongside her fellow PPIR, Donna is a member of the review panel for clinical studies involving ovarian cancer. The PPIR team reviews proposals written by physicians and academic groups submitted to organizations like OCC. Patient opinion can hugely impact decision processes, including influencing the physician’s rating of a proposal. Donna says, “Doctors even change their scores based on the feedback the patient partners are providing.”
For example, Donna tells of a research proposal submitted to investigate the benefits of a specific diet following surgery and chemotherapy to treat ovarian cancer. The physicians on the panel felt the proposal was well written, very clear, and properly structured; they scored the proposal very high. However, the patient partners did not agree and immediately saw flaws in the study design. Following the first-line treatment of chemotherapy, a cancer patient can be very sick and possibly unable to eat at all, let alone follow a strict and specific diet. The physicians on the panel did not consider this aspect of the trial. Thus, the patient perspective is extremely important to the success criteria of clinical studies such as these.
Patient partners are now considered the gold standard. Utilizing input from the PPIR team, Donna holds a seat on the national OvCAN Governing Council to oversee the dissemination of funds for basic research, pre-clinical research, and clinical trials. Donna says, “The hard reality of clinical research is it’s a long road ahead; we are just getting started. But, in Canada, we have some of the top ovarian cancer researchers in the world, and I believe we are on the cusp of greatness!”
Submitted by: Dr. Oliver Kent, Cancer researcher and Senior Scientist at adMare BioInnovations.
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