Friday, April 20, 2018

It took over 30 years living with Crohn’s Disease before it really struck me how little people like me participate in the decisions and choices affecting our healthcare.

I ended up wondering what the world of healthcare might look like if the voices of all patients were empowered and their choices supported. What if it was actually operated by patients? How different would that be?

If you’re someone who lives with a chronic health problem that just won’t let go of you, then this is where you belong. This is where you can start to get even.

That’s what’s going on here. Join us. We’re all patients too.

Our work is all about you and improving your experience. We know how good, good health can feel. And we know how much bad health really sucks. Giving you a choice you may never have felt you had, is the core of our work. Choices that matter to you. We think that’s important. Because we’re patients too.

We organize people around critical health issues and enable them to advocate for their own cause. You’ll see us working behind the scenes with causes like rare skin disorders (HS Aware), diabetes (T1DTTN, T2DXX) and women’s health (CanFib). We’re there to build leadership capacity, help develop their stories, and ensure that all voices are heard, respected, and supported.

We’ve been part of the patient experience movement before it was a movement. As co-chair of the Beryl Institute Global Patient and Family Advisory Council or co-chairing a Health Quality Ontario committee that made Canada’s largest health conference “Patients Included”, we have focused on supporting the value that Patient and Family Advisors bring to improving the delivery of care.

It’s no longer good enough for health policy decisions to be made without patients included. Nationally, we’ve pushed the envelope on how patient voices are heard in the CADTH Common Drug Review approval process. Locally, Zal was on the leadership team at the Toronto Central LHIN that established a new standard of partnering with patients in large scale integration of health services.

This is where we started and is central to everything we do. Amplifying the patient voice through the power of your own narrative. Our collection of patient stories influences policy, education, research, and practice. Stories are where we find meaning and enrich our appreciation of the lived illness experience.

Critical issues demand attention. This is where we dive deeper to explore what it’s like to live with Type 2 Diabetes, or the devastating impact of uterine fibroids. End-of-life? Yes, we have opinions. Health and the arts – that too. And we honour many women whose efforts to make a difference goes unrecognized.

Let's work together. Send us a message!


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