The Netherlands faces similar challenges to Ontario in getting healthcare organizations on board to collaborate with and support caregivers.
In May 2018, Carole Ann Alloway, a family caregiver, and I partnered to develop and present a keynote address at the International Foundation for Integrated Care (IFIC) annual conference in Utrecht, The Netherlands. A few months after our presentation I asked Carole Ann to reflect on her experience.
On the precipice of change, we stand to take the growing provincial interest in young carers and turn that into a national framework.
Just as there are many ways to roast a chicken, whip together a savory pesto, or bake a chocolate cake, there are many ways to go about creating meaningful change at a system, organizational, provider, patient and family caregiver level.
People often ask us how to truly co-design and engage with caregivers and healthcare providers. In Lessons from Changing CARE: The Discovery Phase of Experience-Based Co-Design, we do our best to answer that question.
I knew we had something special, and I knew it lended itself to an engaging multi-media approach. So we set out together to create the Caregiver Wishlist.
Now that we’re more than a year into Changing CARE, it’s the ideal time for us to stop and reflect on the collective path we’ve taken so far, and release our learnings on the engagement phase of co-design.
Their journeys, their voices, their wishlist.
We first took on the issue of Ontario’s privacy and consent rules for caregivers in our 2017 report–Making Privacy and Consent Rules Work For Family Caregivers–after hearing repeatedly that privacy and consent is a barrier faced by many of Ontario’s family caregivers, and is too often used as a crutch for the lack of engagement with family caregivers.
It’s hard to believe that it’s been a year since the four Changing CARE teams launched their innovative, caregiver-focused projects.
One year, 15 cross-cutting working group sessions, 17 bi-weekly project managers meetings, and numerous steering committee meetings, to be more precise. Most impressively, across the four teams, more than 650 caregivers have participated, informed and partnered on the change they’d like to see.