Advice from Patients and Care Partners: 2024 Book Project

Published by Beth Campbell Duke on

Advice From Patients and Care Partners

Advice From Patients and Care Partners: Gathering Our Experiences

I’ve gone back to the drawing board to re-create my book writing project! Last year’s project was overwhelming and didn’t centre the most important information: the lived experience of the only people in our healthcare systems that navigate the disconnected offices, clinics, hospitals and community care services.

US! Patients and care partners.

The current project will start with gathering information and advice from patients and care partners. I’ll be seeking out stories of our experiences navigating Canada’s healthcare systems.

As a group, we are experts in navigating between and among the siloed, disconnected systems. We have been tasked with ‘New Work‘, often without being told of the new expectations on us and for the most part without any training or support.

We are disconnected from each other. Together we can be a force for change. And help ourselves!

Why Healthcare Needs Advice from Patients and Care Partners

As a result of navigating disconnected and crumbling systems, most of us have developed our own methods of coping and we have made a lot of valuable observations. This information is important to share with other patients and care partners, as well as to help influence the changes we need in healthcare.

  • What have we experienced as we navigate among all of our healthcare settings and providers?
  • What have we navigated that we didn’t first realize was our responsibility?
  • What are the systems we’ve created to make our interactions with the healthcare systems go more smoothly? Or at least try to make things go more smoothly?
  • What do we know now that we wish we’d been told earlier?

How to Get Involved!

If you’re interested in sharing your experiences, observations and the processes you’ve adopted regarding interacting with the healthcare systems in Canada, you can opt in by any or all of the following:

  • Answer survey questions in writing (Find the Google form HERE).
  • Use the survey questions to help you prepare to do an in-person interview. We can chat via Google Meet. If you’d like to book a time to meet, please get in touch (Beth@NavigatingHealthcare.ca).
  • Join the Advisory Group to read and have input to the writing as it proceeds. Advisory group members will get a free digital copy of the completed book. Of course, this is free to join.

Ad Thanks Vance

Thanks in advance!

Beth Campbell Duke

Beth is a science educator and family caregiver for her husband, Tony, and her parents. She's busy developing programs and materials to help other patients and family caregivers navigate the healthcare system and tell their stories. Beth's biggest wish is to see the healthcare system incorporate 'trauma-informed care' into its workplaces to address the growing number of healthcare providers, patients and family caregivers experiencing primary and secondary trauma.

2 Comments

Kara · November 28, 2023 at 4:12 pm

This looks like a much needed project given the current state of our healthcare system and its lack of support for both patients and caregivers. Best of luck on your book and thanks for all the work you’re doing.

    Beth Campbell Duke · November 28, 2023 at 4:22 pm

    Thank you Kara! I’m excited to get started.

Comments are closed.