Making Patients Partners in their Care
When Maureen Smith was eight years old, she was diagnosed with a rare, chronic endocrinological condition. She spent years in and out of different hospitals, being treated by endocrinologists, cardiologists, rheumatologists, orthopedic surgeons, neurologists, allergists, and neuro-ophthalmologists. Although she had a committed family doctor, too often her care fell through the gaps of a complex system.
She was heartened when, in 2019, the CPSO approved four Continuity of Care policies intended to help physicians minimize breakdowns in their patients’ care. But she also understood that the physician role was only one part of a bigger picture. When the College asked a group of patient advocates, which included Ms. Smith, to help create a guide to help patients understand the role they play in facilitating continuity of care, she was all in.
“We wanted a guide that sets out for patients, in lay language, the responsibilities of doctors and the College’s expectations of them, while providing practical advice to patients on what they can do to improve their experiences, and complement their physicians’ efforts,” said Ms. Smith, who helped co-create the guide as a member of the Citizen Advisory Group, an advisory body made up of patients and caregivers who provide input to Ontario’s regulated health colleges on issues and initiatives.
Patients, she said, understand the need to be proactive in their health care, “but if we are going to be partners with our physicians, we need to have the necessary information about the system that allows us to advocate for ourselves.” She said the Continuity of Care Guide for Patients and Caregivers delivers on providing that knowledge.
“The message is that everyone has a role to play in the system and that patients have rights, but they also have responsibilities,” said Ms. Smith.
Dr. Keith Hay, a family physician and CPSO Medical Advisor, said it became clear that a guide for patients and caregivers was essential in the development of the College’s Continuity of Care policies. “While physicians are key facilitators of continuity of care in the Ontario health-care system, there are limits to what any individual physician can do to ensure continuity of care. This resource recognizes the important role patients can play in facilitating their care,” he said.
A message from Maureen Smith
As a patient with a rare chronic condition, who relies on the healthcare system, the opportunity to co-design a Continuity of Care Companion Guide for Patients and Caregivers was very appealing to me. I was convinced that this approach would make it relevant to patients and caregivers, and I wasn’t disappointed. Collaborating with a group of Ontarians on the Citizens’ Advisory Group, people who bring such diverse patient and caregiver experiences, was an enriching experience. The support that we had from the College and our facilitator enabled us to share our perspectives and learn from each other. The process they adopted is a model of co-design.
What are some aspects within the Guide that stood out for you?
I’ve read many guides during my long healthcare journey, but this one is quite different. It feels like a conversation between doctors and patients and their caregivers. Rather than produce the standard “how to” guide, the co-designers have opted to provide patients and caregivers with the information that they need to better understand the responsibilities of their doctors at different points during their care. Practical information such as who is responsible for reporting my test results, what can I expect when I am discharged from the hospital, what is my doctor’s responsibility when she or he is away, what happens when I am referred to a specialist, and so many more are incredibly useful. The printable tools such as health summary and hospital discharge information will also be helpful.
How could the Guide help patients and caregivers work in partnership with their health care providers?
We hear a lot about how patients and caregivers should work in partnership with their health care providers, but my experience has shown me that in many instances it’s easier said than done. The fundamental principle of successful partnerships is mutual respect, and I think that this Guide will go a long way to fostering this, because knowledgeable patients who understand how the system works are well-equipped to partner with their doctors. I find the transparency of this guide quite remarkable and as they say, knowledge is power! For me, the Guide is a snapshot of the key responsibilities and duties of physicians: this is what is expected and realistic, this is what is beyond the control of individual physicians, and here are the tools that patients and caregivers can use to work in partnership with their doctors. I really hope that the Guide will go viral!
The Guide is free to download and share at www.cpso.on.ca/coc-guide