Pan-Canadian Patient Council

Patient Council members in Quebec City, November 2024. [L-R] Steve Wolinsky, Joanie Cranston, Judy Porter, Vivian Ramsden, Jamie Jensen, Brenda Andreas, Pixie Wells, Ghislaine Rouly, Mpho Begin, Shaneel Pathak, Luke Beirne.

Brenda Andreas

With aging comes the need for primary care to manage all my chronic conditions. When you live in a small rural isolated community, access to primary care has many challenges and this is how I became interested in patient-oriented research in primary care.

Currently as the co-chair of the CPCRN Patient Council positions I have held positions which include co-principal applicant on the CIHR funded grant for the CPCRN, member of both the Executive Committee and the Steering Committee. I have been involved as a co-applicant, knowledge user, and co-investigator on funded POR research since 2017. I have participated in reviewing grant abstracts, developing training curriculum, measurement tools, and in knowledge translation activities where I have collaborated on the design, delivery, and evaluation of these projects. Nationally I am collaborating on three CIHR funded grants and in Saskatchewan I am collaborating on two CIHR funded grants as well as two SHRF grants.

With lived experience as both a patient and a researcher I focus my research on bringing connection, community, and relational equity to impact evidence based best practices within the health care system. For me this means building trusting relationships amongst the health care system, health care providers, recipients of care, health partner organizations, academia and with researchers. I am also a strong advocate for equity, diversity, and inclusion particularly for including the voice and visibility of our underserved vulnerable populations.

Jamie Jensen

I worked in the Family Practice Unit at Sunnybrook Hospital in Toronto for 12 years in various roles. I was a receptionist for two family physicians in the Family Practice Unit for six years, worked in the manager’s office for two years and then transferred to the Primary Care Research Unit at Sunnybrook where I worked with the family from medicine researchers from the Family Practice unit.

In 1994, I moved to the College of Family Physicians of Canada (CFPC) as the admin assistant for a research project that was submitted through Sunnybrook but would be based at that office. When my contract ended, I was hired full time by the CFPC, as a project coordinator in the research department at the CFPC. I had the opportunity to work on research projects with community researchers, coordinate grant funded projects, and work with the Section of Researchers Council, the governing body of the Section of Researchers at the CFPC, to improve the health of Canadians through research. I recently retired from the College after working there for 28 years.

I have been a patient (breast cancer survivor) and one of the caregivers for my parents and feel this is a valuable opportunity to contribute through my own experiences to improve patient care and promote the inclusion of patients in research.

Judy Porter

Judy is a photographer and graphic designer who is a very active volunteer in her community. She was born with complex health issues and has been a lifelong patient of our healthcare system, so much so that she says she grew up in the hospital and got occasional day passes to visit her parents. Just to be safe, she married her own personal paramedic, Phil. Judy was also the primary caregiver for both of her parents in their declining years, travelling the journey of mental health issues, cancer, and dementia with them. As an “experienced patient” and caregiver she brings a first-person lens to the healthcare system. She has been a Patient Family Advisor for NS Health for over a decade. Recognizing that often the patient voice is lost in the larger system of healthcare, she is passionate about ensuring that the needs of patients and their families are always considered in the design and delivery of community and facility centered patient care.

Ghislaine Rouly

Ghislaine Rouly has been a patient since birth, living with two orphan genetic diseases and surviving three major cancers. She has been in the healthcare field for as long as she can remember and has acquired a unique level of experiential knowledge as a person with lived experience and peer mentor accompanying people living with complex medical and social issues. In collaboration since 2015 with Dr. Antoine Boivin, she contributes to all of the Chair’s scientific projects in primary care, homelessness, mental health, Indigenous’ health, women’s health, migrants, youth, seniors and end of life. She works as a person with lived experience researcher in the entire research and knowledge creation cycle (strategic orientations of the Chair, hiring, student co-supervision and mentoring, protocol development, ethics, intervention design, data collection and analysis and knowledge transfer). She has published 8 articles in international peer-reviewed journals, collaborated to 32 publications and given more than 87 lectures (including 33 invited international conferences). She is also co-founder of the Caring Community action research program on peer integration in community care. Her expertise as a person with lived experience researcher is solicited by several organizations in North America (MSSS, INESSS, FMOQ, CPCRN, (Canadian Primary Care Research Network), Patient-Centered Outcome Research Institute (PCORI) North American Primary Care Research Group (NAPCRG) in the United States) and internationally (France, Ireland, United Kingdom, Brazil, and Japan). In 2023, she became the first person with lived experience named co-director of the Canada Research Chair in Partnership with Patients & Communities, based only on her experiential knowledge, with Dr. Antoine Boivin.

Pixie Wells (UnKie)

Pixie Wells is a proud citizen of Métis Nation British Columbia (MNBC). Pixie has been the Leader of the Fraser Valley Métis Association (FVMA) since 2019. Pixie uses her position to strengthen all voices of the Métis Nation. Pixie shares the importance of land and language acknowledgements, including ways-chartered communities can better connect with those from other communities and cultures. Pixie’s Métis lineage is connected on her father’s side, and currently lives on the territory of the Coast Salish Peoples (Sema:th/Matsqui). Pixie holds the housing, health and 2SLGTBQQIA+ portfolio and also contributes many hours for her community. Pixie has a master’s degree in lived experience that brings a grounding to Métis wellness and Métis culture. Pixie has served on several boards including Health Excellence Canada, Primary Care Network (Mission), Patients Advisory Council for Abbotsford for Indigenous Peoples, the Indigenous Education Council for the Abbotsford and Mission school districts and the Coordinated Access Table for Indigenous peoples (SUMMA Urban Aboriginal, Abbotsford). Pixie has helped lead DRUMC (Dawn’s Rising Urban Medicine Circle) for the past 5 years, the Women’s Circle for the Fraser Valley Metis Association and is a past mentor for Youthquest (Indigenous Youth). In 2022, Pixie was the 2SLGTBQQIA+ representative for the Métis National Council Delegation along with the Inuit Tapiriit Kanatami and First Nations Leadership’s trip to the Vatican City where they met Pope Francis before his “apostolic journey to Canada”.

Steve Wolinsky

After I retired, I started to pursue my interest as a patient experience partner at North York General Hospital in Toronto. I am a Professional Engineer with expertise and leadership roles in regulatory affairs in Canada and the US.  I am also a patient, a caregiver and a family member of patients; several family members work in the health care sector. I bring my lived experiences and those of my loved ones to promote better care and better health by incorporating patient’s voices in health research.

I feel very strongly that Primary Care is a core aspect of overall health care and that research by and for our communities is important to support sustainable and equitable improvements. We need the voice of the patient right from the beginning, on what research projects are being developed, and how they are carried out. This will only lead to better outcomes.

I am very pleased to be given this opportunity to become a member of the Pan-Canadian Patient Advisory Council and be able to support important primary care research that benefits all Canadians.