Blending Lived Experience with Research:

Brittany’s Story

Hi! I’m Brittany – and I’m here to share with you a bit about my experience as someone who works in health research and lives with Ankylosing Spondylitis!

I currently work as a Senior Research Associate at the University of Calgary, where I’ve had the opportunity to work on projects focused on rare diseases and juvenile idiopathic arthritis (JIA), including the PAVE project (Producing an Arthritis Value-Framework with Economic Evidence). PAVE is focused on understanding how JIA impacts children and their families, and I am particularly grateful for the opportunity to work on this project – not only because it is such an important undertaking, but also because of my own firsthand experience living with Ankylosing Spondylitis.

Though I was not diagnosed with Ankylosing Spondylitis until I was an adult, I remember experiencing symptoms as a child. My aches and pains were always minimized and written off as growing pains, sprains or strains – even my low back pain, which would cause me to wake up in pain every night since I was a teenager. I normalized living in pain and relied on things like over-the-counter pain medications and heating pads. As an adult, I was eventually referred to a rheumatologist after an x-ray showed arthritic changes. After a series of further X-rays and an MRI, I was diagnosed with Ankylosing Spondylitis.

Given this experience, I feel especially lucky to have the chance to work on a project to help increase the awareness of childhood arthritis and understanding how it impacts patients and families! It feels like fate that I found my role at the University of Calgary with Dr. Deborah Marshall in her Health Economics and Health Services team, where I have the opportunity to blend my lived experience as someone with Ankylosing Spondylitis with the research our team does. It is so rewarding to be involved in health research that contributes to making a positive difference in the lives of others – for example, by informing better access to care, diagnostics, and treatments. One of my favourite parts of the PAVE project is collaborating with our patient research partners. It is inspiring to hear their stories and work with them to make sure that their lived experience is captured in the work we are doing.

The best part of research is that there is truly a niche for everyone! Whether you love crunching numbers, talking to people, or digging into the literature – there is a research space for you. Research truly benefits from multiple perspectives, and everyone brings something different to the table. A great way to learn more about research is to get involved in research studies, either as a participant (where you contribute data) or as a research partner (where you are a member of the research team).

Brittany completed her Bachelor of Arts and Master of Arts in Sociology at the University of Calgary. Her first job was as an analyst for the health system, where her work focused on analyzing and reporting on patient experiences and patient-reported outcomes. Then, she moved into the world of health economics and outcomes research. It was there she found both her interest in studying the socioeconomic burden of disease and in evidence synthesis.

Today, she puts those skills to work helping the Juvenile Arthritis and childhood rheumatic disease community! Click here to read more about Cassie + Friends’ role in the international PAVE project and how you can get involved today!