People affected by cancer play an integral role in research about cancer.
Patients, families, and caregivers have important insights to shape cancer research for the better. Their lived experience can help align research priorities and processes with the needs of patients, ultimately leading to better cancer care.
OICR is committed to building strong partnerships with patients and amplifying their voices throughout the organization. Our Patient and Family Advisory Council (PFAC) provides key guidance as we deliver on our Patient Partnership Plan.
Patient partnership priorities
Bring the patient voice to OICR research
Build capacity for patient partnership
Share knowledge about patient partnership
Sign up here to be contacted about opportunities to get involved.
Patient and Family Advisory Council
In 2021, OICR established its Patient and Family Advisory Council (PFAC). The PFAC will provide OICR with insight, feedback and expertise on issues regarding cancer research and patient partnership.
The PFAC will shape the patient partnership plan for OICR, which will include the development of a community of patients and patient organizations, the inclusion of Patient Partners on research steering/advisory committees and key projects, the creation of patient-focused educational resources, and other priorities the PFAC identifies.
We are proud to be working with this group of passionate and thoughtful patient leaders.
Koko has led innovative research programs across industry, academia and government. Her recent community engagement efforts have focused on equity and inclusion, as well as fostering agency in young women affected by breast cancer. While 35 weeks pregnant at age 35, Koko was diagnosed with invasive breast cancer. She is a mum, wife, sister, daughter and friend.
Michelle lives with Stage 4 breast cancer and advocates for the unmet needs of undersupported communities in the cancer care space, with a focus on health equity and the patient voice. She is involved in many cancer organizations and awareness campaigns, and loves to speak to healthcare agencies and on panels about her own experiences navigating cancer as a Black woman. Michelle comes from an education background and is a mom.
A mother of two small children and a freelance designer and illustrator, Carla was diagnosed with stage-III, triple negative, inflammatory breast cancer at age 34. She is focused on communicating the challenges of early adult cancer and the long term health consequences of both life saving and prophylactic treatments as a carrier of BRCA1, MSH-6 and ATM genetic mutations. Located in Sudbury, she advocates for expedient and socially equitable cancer diagnoses and treatment for patients of North Eastern Ontario.
Beth is a physiotherapist, hospital manager and recent breast cancer survivor. While undergoing treatment, Beth completed her Masters in Heath Administration. She is a fierce advocate for the patient voice in all things, and has made it her priority to represent patients at the decision-making table.
Carol was treated for late stage gynaecological cancer in 2013. She has a network of friends and family members who are patients or survivors. Professionally, she is an accountant (CPA) and financial analyst (CFA) and was recently Managing Director, Audit Services at Ontario Teachers’ Pension Plan. She is also involved with the Canadian Cancer Trials Group.
Terry is a blood cancer survivor, professional engineer and passionate advocate for a healthcare system that can deliver superior healthcare outcomes consistently. He is currently engaged as a patient partner supporting an innovative blood cancer immunotherapy clinical trial program centered at the Ottawa Hospital Research Institute.
Diana received a stage-3 colon cancer diagnosis, followed by surgical and systemic treatment accompanied with complications and further interventions. She is past co-chair of the PFAC for the London Regional Cancer Program, and is involved at Lawson Health Research Institute, the LRCP Cancer Executive Committee and the Patient Experience Advisory Committee at London Health Sciences Centre. Following a career as a registered dietitian, Diana pursued an MSc in Epidemiology and Biostatistics.
Emily has a Ph.D. in Biomechanics from the University of Guelph. Her use of primary research to make complex health decisions helped save her life when she was faced with a brain cancer diagnosis. She now guides other patients through their diagnoses and is passionate about research translation and health equity.
Remembering Jill Hamer-Wilson
Jill Hamer-Wilson, who was a tireless advocate for lung cancer patients and a prominent patient partner in cancer research, passed away in November 2022. She served on OICR’s Patient and Family Advisory Council (PFAC) and also worked with the Canadian Cancer Trials Group, the International Lung Cancer Foundation, Canadian Cancer Clinical Trials Network, the Canadian Cancer Society and the White Ribbon Project. Read more about Jill Hamer-Wilson’s contributions to patient partnership.
Overview of OICR and our approach to Patient Partnership
If you’re new to OICR and/or Patient Partnership, this video offers a great introduction to both topics
Resources for Patients
- Principles of Successful Patient Involvement in Cancer Research
- Everything you need to know about participating in a clinical trial, developed by patients and caregivers – It Starts With Me
(N2 Network of Networks)
- Anyone who has ever been diagnosed with cancer can share their information with researchers everywhere, to help reveal patterns in the data. (Count Me In)
- Potential roles for Patient Partners on Research Teams
(Ovarian Cancer Canada)
- A series of digests on research advocacy and topics within cancer science, including a searchable glossary (Canadian Cancer Research Alliance).