Building a patient-led and patient-inspired knowledge translation platform for gynecologic cancer research

Advances in gynecologic cancer research is rapidly evolving resulting in new prevention strategies, diagnostic tools, treatment modalities, and survivorship care. Patients and survivors have consistently shared the need for accessible and patient-oriented strategies to access the latest research evidence. We aim to co-create a knowledge translation platform with gynecologic cancer patients to share research on prevention, diagnostics, treatment, and survivorship of gynecologic cancers. This platform will include two knowledge translation tools that have been co-designed and inspired by patient partners. The first tool is a new podcast series on the Gynecologic Oncology Sharing Hub (GOSH Podcast) using a storytelling/investigative approach to share the latest gynecologic cancer research. The second tool is a new Gynecologic Cancer Research Blog featuring a series of different articles written by trainees and patient partners. These tools have been created and designed by patients who will continue to share their insight to ensure that the content is relevant to patients. This platform will also serve as an opportunity for trainees to develop science communication and knowledge translation skills.

Team members: Gillian Hanley (UBC); Amy Jamieson (UBC); Janice Kwon (UBC); Lesa Dawson (UBC); Blake Gilks (UBC); Jessica McAlpine (UBC); Brad Nelson (BC Cancer Victoria – Deeley Research Centre); Deborah Money (UBC); Elisabeth McClymont (UBC); Aline Talhouk (UBC); Anna Tinker (BC Cancer Vancouver); Michelle Woo (UBC); Stephanie Lam (UBC); Alexandra Lukey (UBC); Celine Laumont (BC Cancer Victoria – Deeley Research Centre); Siv Klausen (Gynecologic Cancer Initiative); Nicole Keay (Gynecologic Cancer Initiative); Ariadne Hiller (Gynecologic Cancer Initiative); Nancy Cleveland (Gynecologic Cancer Initiative).

Engaging the unengaged: Using CPBR to develop a brief animated “explainer video” on the elevated risks of BRCA gene mutations in BC’s young adult Jewish community

Genetic knowledge is important for Jewish people who are especially susceptible to risks of genetic mutations of the BRCA genes and BRCA consequences which increase the lifetime risk of developing breast, ovarian, prostate, and pancreatic cancers, lymphoma and melanoma. The earlier an individual knows that she/he has the mutation, the better the chances for cancer risk mitigation and monitoring. In the general young adult Jewish population, there is often little motivation to learn about BRCA mutations; however, learning about BRCA mutations is most pertinent when one is young and healthy and able to take steps to prevent cancers. Our aim is to develop an animated “explainer” video to improve awareness and education about BRCA among the local young adult population in partnership with young adults in the BC Jewish community. This video is envisioned as brief (60-90 seconds), entertaining, animated video offering “a taste” of information about the BRCA genes and their importance for young people especially those with Jewish heritage. We will use an evidence-based dialogic, CBPR model to engage young people in BC to help us with video content and dissemination which will be multi-faceted and youth-driven.

Team members: Catriona Remocker (BRCAinBC); Beti Thompson (BRCAinBC); Stephanie Lam (Gynecologic Cancer Initiative).

Costs and benefits of tumour testing to improve cancer prevention and survival

Women who inherit a BRCA gene mutation are at high risk for breast cancer and the most lethal type of ovarian cancer, high-grade serous ovarian carcinoma (HGSC).

A woman diagnosed with HGSC has a 20% chance of unknowingly carrying a BRCA mutation, and is eligible for genetic testing. Getting a blood sample to do genetic testing in this woman is critical, because if she is found to have a BRCA mutation: 1) her relatives (daughters, sisters) can be tested, and HGSC can be PREVENTED in them, and 2) she herself can be treated with PARP inhibitors that can improve survival.

The problem, however, is that the yield of genetic testing is low, and only 30% of women with HGSC undergo such genetic testing. This excludes 70% from effective treatment and leaves their family members at high risk. How can BRCA mutations be better identified?

One strategy is to begin with testing the HGSC tumour itself. If the tumour has a BRCA mutation, PARP inhibitor treatment can be given. These women can then be targeted for genetic testing, and 2/3 of them will have an inherited BRCA mutation. This improves the efficiency of genetic testing, rather than referring everyone with HGSC.

Tumour testing of HGSC is not routinely done in BC. Hence, I propose to conduct a pilot study of tumour testing for BRCA mutations in HGSC, and a cost-effectiveness analysis of its impact on ovarian cancer survival and future cancer prevention, to justify this testing in this patient population.