Patients + Research: Jan Magee
Jan’s youngest son, Wesley, was born with cerebral palsy. She decided to get involved with the research that would make a difference for her son and her family, and today, she is the vice-chair of the Research Family Engagement Committee at Holland Bloorview Kids Rehabilitation Hospital.
Jan and her son Wesley
Can you tell us a bit about yourself and your health story?
I am a proud mother of two wonderful boys. My youngest, Wesley (now 16 years old), was born 2 ½ months premature and diagnosed with cerebral palsy. The health care ‘journey’ from his birth has been a roller coaster. My son was hospitalized for almost three months after his birth, during which we spent time in three different hospitals. My son had an operation during that time as well, before he could come home.
He started occupational- and physio-therapy interventions shortly after, with many other therapies occurring throughout the years including Botox injections for his spasticity (when muscles are continuously contracted). He had surgery again when he was just 2 ½ years old and major orthopedic surgery at Sick Kids when he was 9. Following that surgery, he went through a three-month rehabilitation as an inpatient at Holland Bloorview Kids Rehabilitation Hospital and then as an outpatient for about a year. My son’s current health is stable, but we have many ongoing health concerns and appointments to ensure he is as healthy and pain-free as possible. Our biggest challenge now in our health care ‘journey’ is transitioning from pediatric to adult care and rehabilitation.
I also decided to become directly involved in the work of Holland Bloorview and got involved in the research family engagement committee (RFEC) as a family leader. My goal was to support and make recommendations on research to help make a difference in the lives of children with disabilities and their families based on my lived experiences. I am currently the vice-chair of the RFEC.
Why does health research matter to you?
Health research is critically important for all people with disabilities and it gives me hope that in the future, there will be new therapies, equipment and interventions that will allow people like my son to have the best quality of life possible and allow him to reach his full potential. Wesley has dreams of going to university, getting a job, getting married and travelling the world. With the research currently being done and plans for future research, these goals become more and more achievable for him.
How does health research contribute to a healthier Ontario?
There are so many ways that health research contributes to a healthier Ontario. For example, it leads to therapies and/or interventions that help people with physical disabilities live with less chronic pain and support them in reaching their full potential. Health research can also improve how life skills are taught and inform the design of equipment for non-verbal people to communicate. It can also help reduce health system costs if research is conducted with the goal of helping people with disabilities reach their personal goals, create more equitable opportunities (employment, housing, etc.) for all persons with disabilities, and help people with disabilities live more independently. Health research in Ontario enables better community integration for people with disabilities and creates a rich and fulfilling environment for everyone.
How can patients and families support, improve or empower health research?
It is not only important for the patient to participate in research, but to also have input into what is being researched and provide meaningful consult based on their individual lived experiences. Patients and families also benefit from having access to results from research.
When researchers, patients and families collaborate, from the initial research concept right through to the end result, it allows them to combine their experiences and knowledge to shape research in meaningful ways that help to improve the lives of people with disabilities. Collaboration is essential.
- Patients + Research: Heather Harris
- Patients + Research: Larry Meikle
- RESEARCH SPOTLIGHT: Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital
Add your voice to the Patients + Research blog series. Email or call Elise Bradt at firstname.lastname@example.org, 416-205-1469, or direct message or tweet at us on Twitter at @CAHOhospitals.
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