Essays

Essays October 2016
Open Letters

Directions for Healthcare in Canada – The Next 3 – 5 Years: A Patient / Family / Citizen Perspective

Sharon Nettleton

This letter is part of series of Open Letters from Canadian leaders in Healthcare. To see the complete series please click here.  

What areas of healthcare should Canadians focus on and drive into action in the next three to five years?  What could healthcare look like in Canada in 2020 from a patient/family/citizen perspective? Four areas quickly come to mind:

1) we all have digital access to our health records; 2) there is greater public reporting and transparency of our healthcare system 3) there is greater patient/family/citizen engagement 4) consortiums that include patients/families/ citizens work together to integrate and coordinate our health services.

Digital Access To Our Health Records

I live in Alberta and on a walk this summer with my father, he recalled how Albertans used to receive an annual statement of their healthcare transactions. It included the names of the physicians and services and a tally of the cost. He explained it wasn’t meant to deter the use of services or visits to physicians. It was a record of transaction, a notice of how we had ‘used the system.’ It named the people and services involved in our health during the year and reminded us that healthcare wasn’t ‘free.’ My father went on to say that it made him thankful of our publicly funded healthcare system. While this personal annual health statement wasn’t what we think of today as a ‘medical record’ - it didn’t, for example state test results, diagnoses, treatment plans etc. “It was useful information,” he explained.  “I don’t know why they stopped sending it to us.” “Will it return as part of our digital health record?” Neither of us knew the answer.  

When I’ve talked to family, friends, other patients and citizens about digital access to our medical record, there is great excitement. A safe and reliable place to recall when the last vaccinations were received, what prescriptions have been ordered after a hasty healthcare visit, the results of tests, a diagnosis, treatment plans, cautions and concerns, what we need to monitor and follow-up on. 

Some provinces are moving fairly quickly on this. On July 28 of this year, it was announced that doctors and patients in Nova Scotia can get routine test results and share information through MyHealthNS, a new secure online tool (Canada Health Infoway). The system will be province wide in early 2017 - making Nova Scotia the first province to have a digital health service option. When will patients and citizens in other provinces and territories have similar access? I don’t think most of us know the answer to this.  

Public Reporting  / Greater Transparency

In a more open and transparent health system we would all have a sense of the timelines of developments as important as digital access to our health records. In the next 3 – 5 years I think healthcare leaders will play a significantly larger role in communicating more information about our healthcare system to the public.  I think they will be speaking more openly about what is and isn’t working, what improvements are being made, and what innovations are being developed. In a more transparent system, health leaders would understand how important it is to patients/families/citizens to share this information with us. We can’t help fix what we don’t know is a problem. We also can’t help our leaders prioritize if we aren’t aware of what all is in the ‘health care hopper.’ Some work on this is already happening (i.e., Never Events for Hospital Care in Canada, Sept. 2015, Health Care Ontario, Canadian Patient Safety Institute).

Patient/Family/Citizen Engagement

One of the most positive changes that has emerged in the last five years has been the engagement of patients at three levels: 1) in discussions with providers at points of care; 2) in the design of services at an organizational level; and 3) in planning at a systems level. Many standards, educational resources, toolkits, and strategies continue to be developed (see for example Accreditation Canada, Canadian Foundation for Healthcare Improvement, HealthCareCAN, Canada Health Infoway, Canadian Patient Safety Institute, Health Quality Ontario, Health Quality Council of Alberta etc.). While advisory work being led by patient panels, working groups, and committees is a good start, as noted in the recent national report ‘Unleashing Innovation: Excellent Healthcare for Canada – Report of the Advisory Panel on Healthcare Innovation’ (July 2015, Health Canada) and an entire chapter dedicated to this topic, more action is needed here. As a start, patients/citizens should be on all national advisory panels. They should be governing members of health boards based on their qualifications as patients/family members/citizens. Citizens should be supported in efforts to be engaged in their own health system (see work emerging in Alberta – Imagine: Citizens Collaborating for Health).

Integration / Coordination  

Integration and coordination is something that we as patients and users have been striving for over decades. The barriers and boundaries that have been constructed by organizations, funders, leaders and providers often prevent coordination and integration of our care. Providers and organizations must work in the grey areas so that our care is connected. Primary care is a great place to start this work but it must transcend into all domains of healthcare to create a real health system.

Here, I see the necessity for collaborations to help break down these barriers. Consortiums led by patients/families/citizens should take on this important work. We are the only ones that have the vested interest in ‘connecting the dots.’ We should be ‘at the table’ and also bringing forward issues, innovations, problems and solutions from our perspective, with our knowledge and experience. Our involvement and perspective is essential. Some leading work in consortium development has started (see for example the National Patient Safety Action Plan and National Consortium facilitated by the Canadian Patient Safety Institute). 

Given the momentum that has started in each of digital access, public reporting, patient and citizen engagement and coordination of services, I think the next three to five years will be very dynamic for healthcare in Canada! To bring this about, I see an essential and growing role for patients/family/citizens. Nothing about us without us!     

About the Author

Sharon Nettleton is Co-Chair, Patients for Patient Safety Canada; Patient Safety Champion Volunteer, Alberta's Imagine:Citizens Collaborating for Health

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