Patients help design coordinated care plan

NETHL's Patients' Advisory Council (PAC) has completed work on their part of a coordinated care plan that, marking the first time they will be able to point to a document and say: "I created that."

The council, made up of 11 patients and four providers, spent two sessions working on the co-design of the document, which was. Led by Gayle Seddon, director, client services at the TC CCAC. When completed, it included the headings most important to them: concerns, medications, tests and information about safety nets.

Of paramount importance to patients is the need to know every time a test, treatment or medication is provided and whether it will change the course of their illness. This was a recurring theme among patients who felt, that in some instances, their hopes were unwittingly raised by the mere recommendation of a new treatment or test. Clinicians with an eye to determining how best it can fit in a coordinated care plan are now evaluating this work by patients. The clinicians' evaluation will be provided to patients at the next PAC meeting in October.

Below, are the guiding principles of the patient-created document:

• Be honest about my prognosis
• Suggest a treatment plan
• Ask for my opinion
• Speak in plain language
• Tell me if this (new treatment) will change the course of my condition
• Keep me informed about end of life options on a regular basis

In addition to Ms. Seddon, providers from Anne Johnston Health Station and Sunnybrook Health Sciences Centre also worked on the co-design with patients.  At the council meeting, Dr. Jocelyn Charles, Sunnybrook's chief, family and community medicine, who developed the coordinated care plan with partners, provided an overview of how critically important it is to incorporate the patient voice in the document.