The Patient Perspective Needs to be Heard at the Planning Table

As a parent of a child with complex medical needs, Julie Drury was often frustrated in her efforts to coordinate her daughter’s care and get access to the information that she needed in order to decide next steps.

Even though her role as a senior federal health policy advisor gave her familiarity with some aspects of the health-care system, she often felt frustrated with the lack of communication among health-care providers and other continuity of care issues across the health-care system.

Now as the inaugural chair of the province’s Patient and Family Advisory Council, Ms. Drury is determined that the patient and family’s voice be reflected in health-care policy and decision-making.

Patients, families and caregivers experience the health-care system differently than policy makers, administrators and health-care professionals, she told Council in a presentation about the importance of patient partnerships. And as such, the unique knowledge of patients and families needs to be incorporated into how health-care policies, programs and decisions are designed and implemented.

“You need to talk to the people who are living the system, who have to navigate the system. You need to talk to them and find out what is working for them and what is not working for them. They understand the challenges and barriers best,” she said.

Right now, she says she is cautiously optimistic about the provincial health-care system transformation. Bill 74, for example, suggests that patients and families should be engaged in meaningful discussions about health-care planning, and the Minister of Health and Long- Term Care recently announced the Patient Declaration of Values for Ontario alongside Ms. Drury.

“Things look good on paper, but now let’s put this into practice. We need to operationalize these intentions and get them to live and breathe. We have the opportunity to leverage patient, knowledge, experience and wisdom and make real change,” she said.