Engagement redux

Patients and their families bring much-needed “aha! moments” to engagement research


The best thing about my job is the little surprises. Without question, every time I believe I know exactly what a patient or family advisor will say about any given topic, I am wrong. I hear this from the health-care teams I work with too: there’s always an “aha! moment” of insight. There’s always something we didn’t think of that our patients and families did.

For that reason I have invited one of our inspiring, committed and clever patient advisors to share his story about a clinical study.

“My wife Cheryll and I were very fortunate to participate in a controlled study that examined the impact of nutrition and exercise on the symptoms experienced by head and neck cancer patients. Many patients, including me, require radiation therapy to the neck, making it difficult to eat and intake adequate nutrition. This increases the risk of muscle wasting, which causes increased treatment recovery times and decreased quality of life for many patients. Concurrent with chemo and radiation treatment, Cheryll and I attended formal exercise and education classes at the University of Calgary’s Thrive Centre and Wellspring Calgary, while following a prescribed exercise program at home. My nutritional intake and fitness level was assessed throughout the study period as well.

The exercise and education components of the study helped both of us manage the stress that comes with the surprise of a cancer diagnosis and the physical and emotional challenges of treatment. Although I was active and reasonably fit before my cancer diagnosis, 33 radiation and three chemotherapy treatments had left me feeling nauseous and physically weak. The exercise program helped to stimulate my appetite and minimize muscle loss, making my recovery faster and easier.

Without a doubt the most positive impact of the controlled study for me and Cheryll was the opportunity to meet other head and neck cancer patients and their caregivers. The study created an instant community with others who were experiencing the same side-effects from treatment. We received so much support and information from others, which continues to this day, and it helped us better understand common treatment and recovery side-effects and how others were managing them.

Our advice to cancer patients and families is to seek out and actively participate in as many support programs as possible. Ask your medical team about educational sessions, exercise programs and support programs that are currently available for your type of cancer. Participation in programs like this made our journey much easier and provided a more holistic treatment of my cancer.”

– Doug Caldwell, patient advisor,
Calgary Cancer Patient and Family Advisory Council

See what I mean? There’s nothing like the power of a story to help us know what’s working so that we can amplify and learn from it. For me, the “aha! moment” in Doug’s
story came when he spoke about the community that developed during his study. Before hearing his story I knew that clinical studies and trials were advantageous, but I didn’t fully realize how multifaceted the benefits could be.

The Patient and Family Advisory Council created strategic priorities this year and “research” was among the top three. I believe that Doug’s story and passion was a driving force in this, and I hope that the advisors can work with researchers, providers and families to share more success stories.

Jessica Dollard is the patient-centred experience advisor on the Calgary Cancer Project. As a consultant in engagement and patient experience, as well as an actor, film and theatre producer, programmer, medical skills trainer and executive certified coach, she brings a creative background to this work.

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