Patient Partners in Research

BHCRI’s new Patient Partners in Research Program is a mechanism to engage individuals impacted by cancer in a cancer research program.

BHCRI serves as the ‘matchmaker’, matching patients as active partners in research teams.

Introducing Network Co-chairs:

Jeanette Boudreau is an Associate Professor in the Departments of Microbiology and Immunology and Pathology at Dalhousie University and has been Scientific Director of BHCRI since January 2023. She is a DMRF Cameron Scientist, and the Immunology & Genetics lead of OCEANS, the Ovarian Cancer Expert Alliance of Nova Scotia. Dr. Boudreau was the first in Atlantic Canada to receive a Terry Fox Research Institute New Investigator Award and she continues to work with the TFRI Marathon of Hope Cancer Centres Network. She serves on the Scientific Advisory Board for Craig's Cause Pancreatic Cancer Society and the Scientific Programming and Cancer Stakeholder Alliance working groups for BioCanRx. Dr. Boudreau is a founding member of the Canadian Cancer Immunotherapy's Consortium's research webinar series. Dr. Boudreau's lab investigates how human natural killer cells immunogenetics programs immune responsiveness to cancer.

Don Desserud is a political science professor at the University of Prince Edward Island. He holds a BA and MA from Dalhousie University, an MA from the University of New Brunswick, and a PhD from Western University. He was diagnosed with non-Hodgkin lymphoma in October 2015 but has been cancer-free since April 2016. He serves as a patient representative on the Advisory Board of the Canadian Cancer Research Alliance, Health PEI's Cancer Strategy Coordination Committee, and the patient advocacy committee of the Canadian Association of Psycho-Social Oncology. Don was one of three patient representatives sponsored by the Canadian Institutes of Health Research to attend and present a poster at the 2024 American Association of Cancer Researchers in San Diego. He is also a patient partner with BHCRI member, Dr. Patrick Murphy. Don lives in Cornwall, PEI with his partner Dr. Robin Sutherland, and their high-energy Havanese dog, Jinx.

 

Are you a BHCRI member looking to engage a patient partner in your research program? Please contact BHCRI: input@bhcri.ca

Are you a patient (patient partners include those living with cancer, those at risk or post-treatment from a cancer diagnosis, or family members, friends or personal caregivers) in Atlantic Canada and interested in getting involved in a cancer research project? Please contact BHCRI: input@bhcri.ca for more information.

 

Current Projects

New research study to treat insomnia in cancer survivors. Are you a Canadian cancer survivor who has difficulty sleeping?

Please follow the link for information

 

Resources for patient partners and researchers:

Patient partners and researchers are encouraged to complete CIHR’s Training Module-

CIHR IMHA Training Program: https://lms.udutu.ca/LMSPortal/Account/Logon?orgCode=IMHA

 

Onboarding Guide for Patient-Oriented Research Teams
These planning guides were co-developed with patient partners of the Saskatchewan Centre for Patient-Oriented Research and intended to help research teams get a good start in working together with patient partners. Onboarding guides are available for patient partners [ PDF (329 KB) - external link ] and for researchers [ PDF (212 KB) - external link ].

Patient and Public Engagement Planning Template [ PDF (142 KB) - external link ]
This planning template has been created by the Newfoundland and Labrador Support Unit and walks through a number of areas to consider when planning to engage patient and public members as part of research, including the Why, Who, When, What and How.

Patient-Centered Outcomes Research Institute (PCORI): Engagement Tool and Resource Repository
PCORI is a non-profit, non-governmental organization located in Washington, DC. Congress authorized the establishment of PCORI in the Patient Protection and Affordable Care Act of 2010. This searchable peer-to-peer repository includes resources that can inform future work in Patient-Centered Outcomes Research (PCOR).

Patient Engagement in Health Research: A How-to Guide for Researchers [ PDF (1.3 MB) - external link ]
In this Guide, the Alberta SPOR SUPPORT Unit identifies five key steps to engaging patients throughout your research project: Why, Who, How, Engage, and Evaluate. The discussion of each stage includes an overview of current evidence, methods of engagement, patient and researcher competencies, tips for engagement, key examples, and engagement tools that can be used to optimize the process.

Patient-Oriented Research Pathways Self-assessment Readiness Tool for Researchers [ PDF (493 KB) - external link ]
Patient-Oriented Research Pathways Self-assessment Readiness Tool for Patients [ PDF (459 KB) - external link ]
The POR Pathways Project, organized by the BC Support Unit, has focused on learning what competencies (defined as knowledge, skills, attitudes and attributes) are needed by individuals on POR research teams. Their project team conducted a full scoping review of peer-reviewed and grey literature to identify competencies for each stakeholder group as defined by CIHR -- patients, researchers, health care providers and health system decision-makers. Self-assessment tools have been developed that guide patient partners and researchers to assess their readiness to engage in POR and to find online learning resources to acquire competencies.

Roles for Patient Partners in Your Project [ PDF (499 KB) - external link ]
This short document is provided by the SPOR Chronic Pain Network. The document provides researchers with concrete ideas about ways patient partners can act as co-researchers on teams.

Take Your Patient Partnering to the Next Level [ PDF (381 KB) - external link ]
This short, easy to read document by Health Quality Ontario gives concrete advice and practical tips to overcome common challenges in partnering with patients. Created for healthcare projects, this information is transferrable to research projects.

Workbook to guide the development of a Patient Engagement in Research (PEIR) Plan [ PDF (1.03 MB) - external link ]
This workbook facilitates high-quality partnerships between researchers and patient partners undertaking research projects together by presenting guidance for research project teams to plan their activities. It uses the Patient Engagement in Research (PEIR) Framework which includes eight components that outline meaningful engagement in research from the perspectives of patient partners. Created in partnership with University of British Columbia and Arthritis Research Canada.