How much of a voice does a patient have in their treatment?

We are born as patients. We die as patients. For some Canadians, many years between those rites of passage are spent as patients. Yet, how much of a voice does a patient have in their treatment? Not much, according to delegates at the first Canadian Patient Summit, held in Toronto March 28 and 29. More than 100 patients living with chronic medical conditions joined more than a hundred caregivers, health professionals and policy makers in the two-day session to share ideas on how to increase patient involvement in healthcare decisions. Keynote speaker, Ontario Health Minister, Deb Matthews told the summit, “The voice that has been deafening in its silence is the voice of the patient. We need to hear the voice of patients far, far, far more than we do today.” With the birth of the Canadian Patients’ Coalition at the summit, that voice will be taking shape over the next year.

The chair of the summit, Karen Philp, says “Patient-centered care has become a big catchphrase in today’s health care discussions. But that’s a term rooted in the medical community. What we need to establish is ‘patient experience’ as the key phrase in those discussions.”

Delegate John Munroe, a First Nations diabetes advocate from Saskatchewan agrees. “The most important thing about this summit is that we’re all representing the patients’ view, and every patient has a voice. If one patient speaks, it is not heard, but if many patients collaborate, just imagine what we could do nationally.”

So, why is this awareness of patient experience needed? Aren’t there already many organizations representing Canadians dealing with many different diseases and conditions? Yes, but this summit decided what’s needed is a national organization for Canadian patients – a unified voice for greater contribution and impact. Ontario Health Minister Deb Matthews thinks it’s a process of mobilizing realization of patient ownership into effective public engagement.   “If patients designed a system that reflected their needs, we would have a much more highly integrated system.” Matthews challenged all Canadians to be more involved. “It’s your system, you own the system, you pay for the system. The system belongs to you.”

Part of the summit was dedicated to choosing three key ideas for patient engagement following a series of weekend workshops that discussed dozens of proposals. They are: One Patient-One Record, the promotion of electronic health records across the country; Patient Navigators, the establishment of a system whereby patients can access a point person to link them to complete awareness of all available health services and options; and Patient Advocacy, the development of a volunteer-based coalition to advocate for government changes to the health care system based on patient experience.

Toronto MP, Carolyn Bennett, pointed out that patient engagement is a growing movement in other countries around the world. “In Sweden, for example, the number one health goal is public participation.” How could that apply in Canada? One suggestion was to have patient advocates appointed to provincial health ministries. And at the municipal level, there are already citizen representatives on local boards of health. But this coalition would like to see patient representatives, a much more specific link to patient experience. Bennet told delegates, “Every Canadian must be an empowered patient.”

Economist, Mark Stabile, reminded the delegates that the Ontario government wants to cut health care growth from 6% to 3%. So, the key to improving the health care system, in his words, will be getting better value for what money is available. The Canadian Patient Summit delegates believe patient experience can provide the input to help determine what’s needed. When Canada’s First Ministers set out the 2003 accord on health care, they specifically referenced “patient-centered” health care services. More recently, the Health Council of Canada issued a bulletin focusing on chronic health care,Helping Patients Help Themselves . It looks at how increased patient self-management can improve the health care system. The bulletin states, “Ideally, they [patients] will feel they have some control over their health condition, rather than having it control them.” The bulletin also refers to the growing interest in a US-based concept, the Chronic Care Model. It’s based on a philosophy of patients taking an active role in their care, supported by their primary care providers working together with specialists within a supportive community. That would seem to fit in with the summit’s ideal of using patient experience.

Over the year, the nascent Canadian Patient Coalition will carefully develop its public definition. The summit organizers will produce a comprehensive report based on the event. Look for a Canadian Patient Coalition website later this year. Its purpose will be to get Canadian patients talking and engaging to make our health care system better – based on patient experience. For Canadians who wonder how their patient experience can become a deciding factor in the health care system, Professor Kevin Leonard of the University of Toronto’s Department of Health Policy, Management and Evaluation has this simple prescription, “Look in the mirror – it starts with you.”

Terry Glecoff, Outreach Officer, the Health Council of Canada

Key Words: Patient Engagement, Primary Health Care