Patient Partnership - Ontario Institute for Cancer Research

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 outcomes.

OICR is committed to building strong partnerships with patients and amplifying their voices throughout the organization.

Patient partnership priorities

Engage the patient community

Build capacity for patient partnership

Communicate about patient partnership

The OICR Patient Community

The OICR Patient Community is open to anyone who wants to contribute to solving cancer together as a patient, family member or caregiver with lived experience of cancer. Members are kept informed about patient partnership opportunities, upcoming events, and the latest advancements in cancer research.

Members of the Patient Community can take on varying roles, including collaborating with research teams on a specific research project, providing input on OICR strategy, and attending events to represent the patient perspective. There is no commitment when joining.

Patient and Family Advisory Council

Since 2021, the OICR Patient and Family Advisory Council (PFAC) has provided OICR with insight, feedback and expertise on patient partnership in cancer research. PFAC helps OICR in integrating patient perspectives and insights across OICR priorities, programs, and processes.

The PFAC has a direct role in shaping patient partnership at OICR, including setting goals, advising on how patient partnership opportunities are implemented, monitored and assessed, and supporting OICR’s mission.

We are proud to be working with this group of passionate and thoughtful patient leaders.

Michelle Audoin

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.

Carla Bossart-Pletzer

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.

Carol Gordon

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 Hawrysh (Chair)

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.

Emily McIntosh

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.

Mona Sabharwal

Diagnosed with AML, Mona is actively receiving treatment. A pharmacist by training, she has worked in pharmaceutical policy and health technology assessment, where she helped bring the patient voice to public drug funding decisions. More recently, she serves as an executive at a national pharmacy chain. She has served as Vice-Chair at a national patient support and advocacy group and continues as strategic advisor to the Cancer Clinical Trials group.

Ambuj Srivastava

Ambuj has a background in Engineering & IT and also serves as a Research Advocate and Mentor with the Cholangiocarcinoma Foundation. As a former caregiver to his father with a rare form of cancer, Cholangiocarcinoma, he understands the challenges for patients and families who endure this difficult journey. Ambuj is passionate about cancer research, patient advocacy and raising awareness by bridging the knowledge gap between patients, caregivers, and healthcare professionals.

We remember

OICR is indebted to the patient partners, past and present, who have selflessly contributed to solving cancer together. We remember, with gratitude, Jill Hamer-Wilson, an inaugural member of the OICR PFAC, and Andrea Redway, who served on OICR’s Board of Directors. They are missed.

Resources for patients, caregiver and family members

Patient Partnership Training

OICR recommends all prospective patient partners take the free online modules on patient partnership in research provided by the Canadian Institutes of Health Research’s Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA).
The Patient Partner Learning Annex, developed by 3CTN, is a tool for patient partners to identify resources, education, and training programs to support active and meaningful engagement in cancer research.

Contribute to cancer research

Anyone who has been diagnosed with cancer can share their information with researchers, to help reveal patterns in the data. (Count Me In)
Clinical trials are an essential part of cancer research, and discoveries made have advanced scientific knowledge and resulted in new, improved treatments for patients. For more information on clinical trials, visit the Canadian Cancer Clinical Trials Network website, It Starts With Me. To help find a clinical trial you may be eligible for, 3CTN offers a Clinical Trials Navigator.

Frequently asked questions

What is a patient partner?
A patient partner is an individual with lived experience as a cancer patient or caregiver/family member who collaborates with OICR and/or OICR-supported researchers to bring the patient perspective and insight to Institute priorities, programs, projects and processes.

What roles do patients have in OICR research?
The roles for patient partners at OICR are varied. Since OICR has committed to integrating the patient perspective across the organization, there are roles in nearly every aspect of the work we do. Getting involved as a patient partner could involve joining a research team on a specific research project, providing input from a patient perspective to inform OICR’s strategy, or attending an event to provide a patient perspective to the proceedings.

Is patient partnership the same thing as participating in a study or trial?
Patient partnership is different from participating in a study or clinical trial. Patient partnership involves patients providing guidance to the researchers about what, why, and how to conduct their research studies to include the priorities and perspectives of patients. Participants in a study or trial are participating in the research study to contribute to the collected data.

How do I find out more about clinical trials?
Clinical trials are an essential part of cancer research, and discoveries made have advanced scientific knowledge and resulted in new, improved treatments for patients. For more information on clinical trials, visit the Canadian Cancer Clinical Trials Network website, It Starts With Me. To help find a clinical trial you may be eligible for, 3CTN offers a Clinical Trials Navigator.

I need advice about my current treatment or the treatment of a loved one. Who do I contact?
As a research institute, OICR doesn’t offer treatment and cannot provide medical advice. Patients should speak first to their doctor, who will have the most detailed record of their medical history.

Excellent resources available online to help navigate cancer treatment and care, includes the Canadian Cancer Society. Information specific to Indigenous populations in Ontario can be found at Cancer Care Ontario.

Where do I go if I want to learn more about the basics of cancer research?
Canadian Cancer Research Alliance (CCRA) created a page with summaries of topics in cancer research that may be helpful to patients. This page includes a searchable glossary for common terms that often come up related to cancer and can be accessed here: https://www.ccra-acrc.ca/resources/patient-research-advocates/

In the News

Pharmacist and health policy specialist comes full circle as patient partner

Sep 05, 2024

Caregiver brings father’s voice to cancer research

Jul 15, 2024

New 3CTN initiative aims to address barriers faced by underrepresented populations and expand clinical trial involvement

May 27, 2024

Ontario cancer community comes together at OICR Translational Research Conference

Apr 03, 2024

Ask a cancer researcher: Is there a blood test for cancer?

Mar 22, 2024

New PFAC Chair takes lead of growing, evolving community of OICR patient partners

Feb 27, 2024

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