• Photograph by Emily Nicholas

Patients' voices matter in Canadian health care

How do we measure a health care system? Should we examine re-admissions, wait-times, or medical errors?

The numbers are necessary for assessment and quality improvement purposes, but no amount of data, no algorithm however complex, can capture the patient experience.

A decade of surgeries, scans, therapies and prescriptions have left me in awe of medicine's ability to fix and treat. These years have also provided a reality check on my idealistic view of the Canadian health system. Being a patient opens your eyes to what happens between and around the things measured, and most importantly includes what it all felt like.

"I hope my patient story reveals areas where there may be room for improvements"

My own patient story includes how it felt to be a twenty-something waiting for a hip replacement, and how the pain felt different, but still terrible, when waiting for treatment for anxiety and depression. The excellent care provided by doctors and nurses is a part of that story... but even more of my recovery was due to my family. They who prepared healthy food for me, picked up my medicine, installed my shiny new raised toilet seat, and even helped me wash my hair.

Some experiences seemed to re-occur over and over. For instance, the paradoxical sense of isolation I felt, even though physically I was rarely ever alone. Also the awkwardness of the 'Grey Zones' — a term used regularly by my Patients Canada colleagues and I — the times when you are not acutely ill but you're not well, either.

My patient experience, according to my official records, is composed of contained encounters with health care professionals and institutions. Ouotside of these acute encounters I was no longer a patient in the eyes of our universal system. My medication was back to being covered through a private plan, and my family paid out of pocket to have someone help me with physiotherapy at home, since it was difficult to get to the hospital clinic. My psychological state was not on the treatment checklist, apparently.

"I felt like 'Emily the Leg'"

I often say that in the thick of my patient experience I felt like 'Emily the Leg'. Emily the Leg was cared for meticulously. Emily the Person, not so much. It wasn't until I had (private and expensive) mental health treatment that I started to learn about coping skills: the importance of healthy eating and physical activity and the therapeutic value of social support. These are important components to getting well, left out of the universal system.

The numbers show that my patient experience was a success. It's true the system performed just as it was designed to. But I hope my patient story reveals areas where there may be room for improvements, such as:

  1. The influence of my socio-demographic status on my health. Being in a solid financial situation, and having a warm, accessible home to recover in, as well as the ability to speak English fluently.
  2. The profound effects of family and loved ones on my recovery.
  3. A great deal of integrated mental health care supports and preventative care.

These are not ground-breaking insights, and none of these issues lend themselves to quick and easy resolutions. But what matters in health care can be revealed in a more tangible and accessible way when we see them illustrated by a patient's story. Mine is just a drop in an ocean of patient stories in Canada. We'll never be able to consider them all, but what we can do is make strategic and concerted efforts to help people bring their experiences and wisdom into the health care conversation.

Just as I've been privileged in my ability to access and handle our health care system, I've also been privileged in being able to tell my story. I speak English, am 'health literate', and I have flexibility in my work to participate in conferences and events. And now, thanks to multiple surgeries I can walk up the stairs to a stage, and tell groups of health care providers and administrators my own story. Bringing the patient's voice to health care will require the inclusion of those whose experiences are much different from mine, and which might not be easy to access, or comfortable to listen to.

"For starters we should provide platforms and tools to help people share their stories"

There are some ongoing initiatives already underway to support patients and their families in sharing their experiences. Patients Canada collects these written narratives and is exploring ways to learn from them. Healthy Debate has a site called Faces of Healthcare to "give voice to those whose experiences are shaped by health policy decisions." Many disease-based charitable organizations collect patient stories, and over the years lots of projects have explored the value of narratives.

Research by the British Columbia Centre of Excellence for Women's Health in 2000 asked First Nations women about their encounters with health care services and systems, and made recommendations based on what they heard. All of these initiatives are commendable, but systematic and strategic efforts are needed in order to incorporate what is learned to set priorities and create policies. How to best accomplish this needs to be further explored, but for starters we should provide platforms and tools to help people share their stories with organizations like these, and the people who make the big decisions.

If health care is to move from its acute, disease-focused model to one which works to address the interplay of social, economic, cultural and environmental factors that contribute to health, then the shared experiences of patients with the full story of their own experiences will be essential. The patient voice can add a richness to our understanding of Canadian health that just can't be realized with numbers alone.





 Emily Nicholas is a speaker and adviser with Patients Canada and Director of Health Communications and Engagement with Evans Health Lab, helping to bring the patient voice for Canadian health for more than seven years. She's participated on boards and in conferences with Ontario Ministry of Health and Long Term Care and Health Quality Ontario, and contributed to national gropus like the Canadian Institutes of Helath Research and the Canadian Institute for Health Information. Emily also works with Dr. Mike Evans at St. Michael's Hospital in Toronto, a Canadian hub for the social determinants of health.

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