Member Autobiographies

I am a public advocate disguised as a physician and university professor. I have devoted most of my professional life to bridging the yawning gap between what people need and what they get from the health care system. I feel very privileged supporting people who have just received news about a life-threatening illness, such as cancer; who are facing life-or-death decisions; who have been declared terminally ill; or who live with multiple, chronic and incurable diseases.

After spending more than two and a half decades exploring ways to promote a person-centred health system, I am perplexed by how little progress has been made, by the lack of accountability at all levels of the health system and by the way in which the public tolerates it.

My interest in becoming a member of PAC is rooted in my sister’s experiences with the health care system. She had suffered a range of debilitating symptoms for over 10 years, being given diagnoses ranging from MS to insanity. After years of suffering, she fought the system, appealed an OHIP decision, and requested an assessment at the Mayo Clinic in Rochester. A tumour was discovered in her brain (doctors had been too busy looking for evidence of MS, or had decided she was nuts), but due to the length of time it had been there, she was no longer a surgical candidate. As a result, the only treatment option was 5 weeks of daily radiation treatments to her brain in the hopes of halting the growth of this mass. Had she been the ‘perfect patient’ i.e. one that asks few questions and does as told, she’d...

I began working with PAC as a communications coordinator and its helped me to understand the complexity of the patient voice and its value for health care services and policy.

I'm especially interested in patient narratives and the different benefits for patient-provider relations and how they contribute to a strong community of empowered and informed patients.

If we could only make one change to Canadian Health Care, I hope that it will be to shift to a patient-centric focus. Only then will people experience the empowerment of informed choice and feel respected. It is my belief that if the Patients’ Association of Canada is successful in pushing towards that new paradigm, we will achieve improved Health outcomes for our population.

I started to work with PAC in August 2011 as a coordinator for their Trillium-funded Project to support Board Members across Ontario in assuming the patient perspective. Membership followed naturally.

Whether you are a patient, a daughter, a father, a friend - the efficacy of our health care system is everyone's business. The fact is that the only way to effectively treat patients is to attend to those patients' needs, and so there must be room for that voice in the structure. I am excited to see the number of conversations and projects that PAC can put forth to help fine tune our existing health care system.

Teckles Photography Inc. Katarina is a well known and respected registered nurse and national patient safety advocate. She is a Manager of Resident Care with Halton Region, Services for Seniors Division and has previously worked as a Patient Safety Officer as well having held various positions in medical oncology and hematology management and clinical trials coordination and management.

I am a Professor in the Department of Health Policy, Management and Evaluation at the University of Toronto. I am a life-long survivor of Crohn's disease and an advocate for patients’ rights. I am very passionate about patients accessing their own Health information and record. As such, I wrote a book called "A Prescription for Patience", started a Patient Destiny blog and initiated a symposium entitled "One Patient, One Record”.

I am a young adult cancer survivor, having been diagnosed five times with synovial sarcoma, a rare soft-tissue cancer. I now live in British Columbia, though I was treated at Princess Margaret Hospital in Toronto, where I continue to be seen for follow-ups. Since my initial diagnosis, I have tried to channel my energies into blogging and freelancing, activism, and into the wellness sphere. It is through my experiences with cancer that I have become an active member of the Young Adult cancer movement, and also that I have developed an interest in holistic nutrition and health after cancer. In 2009, I founded and produced a festival of music, dance, and theatre called Upstaging Cancer, which was in benefit of cancer research, and which is being planned again for this year.

I am presently a full time Professor in the Justice Studies program at St. Lawrence College. I have been affiliated with the college for over 10 years. Prior to my teaching career I was an Instructural Designer in the Post-war Graduate Studies at Royal Military College. Prior to that I held a number of senior ranks with the Ministry of Correctional Services including (A) Superintendent and Deputy- Superintendent of a number of maximum secure detention centres. I also held the position of Director of Treatment in a medium secure treatment facility located just outside of Ottawa. My tenure with the Ministry spanned over 13 years.

My interest in patient freedom arose first as a writer. In my first career as a newspaper journalist (before the Internet), I discovered an enormous gap between what the media care about and what patients care about. The media tend to focus on hot-button political issues, whereas I learned that patients – who would mail hundreds of letters to the editor every day (only a few of which we could publish) – care more about being treated with fundamental dignity and respect. My personal passion is to develop new low-cost tools and interventions to improve the needs of people facing mental health challenges. I became a health policy lawyer and went to graduate school in public health but I have learned vastly more about what patients want from listening to their voices on the Internet than from books or...

I became an RN in 1963 and have taught nursing at numerous hospitals in Toronto. Along with lawyers, physicians and teachers, I helped to found the Non-Smoker's Rights Association (NSRA) in 1973. I have a particular interest in Geriatric Nursing, and in 1989, I became Nursing Supervisor of the Samuel Lunenfeld Special Day Care Program for people with dementia at the Baycrest Centre for Geriatric Care. I retired in 2001 and now manage my husband's family practice and help other family physicians test patients for dementia.

Saeed Hydaralli is a Project Researcher with the GreyZone of Health and Illness, Culture of Cities Centre. He is currently hard at work writing his dissertation with a focus on Public Health. He has also been adjunct faculty in Liberal Studies at OCAD University for the last 5 years.

His interest in PAC stems from his long experience with medicine and hospitals as a consequence of his mother’s extensive ailments, which includes being a kidney-transplant patient, and subsequently (and currently) a dialysis patient, as well as diminished capacity in relation to a variety of her organs, and her mobility, all of this apparently attributable to the auto-immune disease scleroderma. That experience has taught him that the doctor-patient relationship is deserving of further exploration.

I am a well-respected and knowledgeable health care systems policy analyst and teacher. I was sure that I would be able to manage my experience as a patient in the system. How wrong I was! I now think that a whole new education is needed for patients - however sophisticated they are - to cope with the complexities and difficulties posed by being a patient in the system for any length of time. I found that I was not alone with this feeling, and other members of the Patients Association quickly joined me in thinking about how we might improve the patient experience. It became clear to us that there has so far been too little room for the patient voice in health care. I believe that strengthening the patient voice is critical to improving the experience of everyone in health care....