At 32 I was a mom to two boys and working part time. When I started to have problems with my hands, feet and overall exhaustion, of course I went to see my doctor. He kept telling me I was just a normal busy mom. This caused a delay of more than a year before I got a diagnosis of Rheumatoid Arthritis. By then my joints had a lot of damage. It was hard for me and for my family to accept this new ‘normal’ in our lives.
Often chronic disease makes people feel depressed and I was no exception, but between my determined physio and a clinical trial of a new drug that my doctor suggested, I was able to reach a turning point. The positive feedback I got from one of the trial doctors made me realize that even with health problems I could change my life through my own actions.
That encouragement led me to try to find and use research papers from PubMed and to share what I learned about RA in private health groups and on Twitter. A friend called it evidence-based tweeting.
Through these efforts I attended an IDEO design thinking workshop. Every patient was partnered with a group of Health Care Professionals and we spent a day of developing a prototype solution for a patient issue – mine was communication between doctor and patient. We created very effective solutions and I thought my team was brilliant. It wasn’t till the next day that I credited myself with having been a team member too.
Because of this conviction of the value of patient knowledge and the patient voice I have persisted in trying to be a patient who is involved in many aspects of the health system.
The first time I was involved in research, as a patient member on a research team, I thought I was helping out, and ended up as a co-author.
Since then I have been on research teams in Ontario applying for grants and also in doing the work after funding. It takes a lot of effort on both sides. The patient voice in research is especially necessary – I had found it shocking in the past to find doctors and researchers used to be the only ones who had input into which results were important to research, rather than finding out what was important to patients.
It has taken a long time for me to become a partner in research, rather than a subject who is being studied. This would have been impossible even ten years ago. I’m so pleased that at last the culture of health care is moving towards the inclusion of patients in meaningful ways.
Anyone who is an active patient will tell you that it is almost always done on a volunteer basis, but being involved has definitely made me healthier, and that’s worth more than money.
- Patients + Research: Joan Baillie
- Building a Healthier Ontario: Tina Ceroni’s Story
- Research Spotlight: St. Michael’s Hospital
Add Your Voice
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