The Change Foundation receives Planetree’s 2018 Global Person-Centered Care Innovation Award

By Cathy Fooks, President & CEO, The Change Foundation

Cathy Fooks, CEO holding Planetree award

We’re honoured to be one of the 2018 Global Person-Centered Care Innovation Award recipients, presented by Planetree International, a global leader in driving patient-centered care for over 40 years. The Change Foundation was selected and recognized for our work advancing co-design and patient- and family-centered care in Ontario — specifically, for our support of the Northumberland PATH project.

While patient engagement is now a common expectation in Ontario’s healthcare system, that wasn’t always the case. In 2010, few organizations in Ontario understood the value of family and patient engagement. No one, to our knowledge, had had the opportunity to test it in a multi-agency context within a community.

Enter The Change Foundation.

In 2010, we began focusing on improving patient and caregiver experiences—especially at transition points in healthcare. Our focus – creating ‘made-in-Ontario’ examples to inspire province-wide change — led to two showcase projects: the Partners Advancing Transitions in Healthcare (PATH) project and the PANORAMA Panel, as well as other smaller initiatives to build capacity across Ontario.

After looking across the province to find a community that was ready and willing to do things differently, we selected Northumberland, located one hour east of the Greater Toronto Area. The Northumberland Community Partnership – a partnership comprised of seniors and caregivers from the Northumberland community, local healthcare and community support agencies, and others – was ready to make change, and The Northumberland PATH Project was born. Eight years later, we can truly see and show the impact of the pilot project in informing system-wide change.

The Change Foundation’s support enabled representatives from agencies across the continuum of healthcare services and beyond to come together for the first time as equal partners with patients and caregivers in a community aligned around a common focus: transitions of care for seniors living with one or more chronic conditions like heart disease, diabetes or arthritis. This experience-based co-design was one of the key elements that made PATH unique and, together, the partners worked to:

  • improve experiences for seniors and their caregivers as they moved in, out of an across the local healthcare system;
  • seek solutions to the real needs of patients and caregivers;
  • test experience-based co-design in action; and
  • prompt system-wide change that would enable seniors and caregivers to live the highest possible quality of life, at home, for as long as possible.

The leadership of The Change Foundation and the willingness of a local community to listen, learn and act together, represented a real first in Ontario, and it proved to be a healthcare game changer. That’s why Planetree International selected The Change Foundation for this award.

More about PATH

The Northumberland Community Partnership worked at the local level, while the Foundation provided the necessary financial support and brought the local findings and translated them for a broader audience, often in collaboration with our province-wide PANORAMA panel. PANORAMA was a 31-member patient standing panel that came together quarterly and provided regular feedback and insights on patient-engagement topics to the Foundation through an online platform over three years.

By supporting this innovative partnership, we learned what is possible when solutions are co-designed with patients, families and healthcare professionals:

  • Connectivity: Local seniors involved in the project successfully tested a patient/provider portal coupled with mobile technology to store their personal health story, monitor their chronic health conditions and communicate with their healthcare providers.
  • Information/planning: A web-based resource was created with information, planning tools and resources to minimize, for seniors and their caregivers, the health-related challenges that often come hand-in-hand with our later years.
  • Volunteer Transition coaches: 31 volunteer transition coaches were recruited, trained and assigned to seniors in the community to help support them with the new technology tools.
  • Person-centered care: A person-centered care model was developed and, related to this, a Patient and Family Advisory Model was developed to help healthcare providers tap into, and use, input from patients and their caregivers.

The evidence of the positive impact of the PATH project on Northumberland patients and caregivers was clear. For example:

  • All patients said they felt they did not have to repeat their health information unnecessarily.
  • 80% said they felt their providers were paying attention to what the patient was tracking.
  • Patient anxiety levels were consistently better after a healthcare visit compared to before.
  • Patients also rated their experience satisfaction as high as 90%.

While our funding and formal involvement in PATH ended in 2015, the project ignited a permanent change in the local healthcare community’s mindset, and an expectation that patients and caregivers should be involved before decisions are made. Co-design has successfully informed changes to the design of the hospital’s spiritual care program. And co-design work continues to grow, with community partners across primary care and acute care now collaborating to host a popular monthly speakers’ series and conversation on health and wellness topics driven by area patients and caregivers (www.pacetalks.com). Through the hospital’s now two-year-old Patient and Family Advisory Council, real time patient experience surveys have been developed. At a regional level, a sub-region planning table is working on a new project to build on PATH’s successful Volunteer Transition Coach model to further examine how trained peer/community volunteers could potentially provide vulnerable patients and their family caregivers with support to augment and increase the capacity of the existing health and social service provider system.

Province-wide Impact of PATH

The impact also extends beyond the community itself. PATH has been credited as the catalyst for a number of provincial and local initiatives, including Ontario’s Health Links model, creating regional wrap-around care for Ontario’s critically ill seniors, our system’s highest users.

Since 2015, patient experience and patient engagement has been a central theme for a variety of province-wide health-related conferences, and other networks of senior health leaders and policy makers. Patient panels have now become commonplace in government, hospitals and across Ontario. In fact, many of our PANORAMA panelists built on their experience on this province-wide panel, and joined other system-wide or local panels.

The learnings from our patient engagement co-design work has directly influenced The Change Foundation’s current focus on the role of family caregivers in the healthcare system and in interactions with healthcare professionals. Through our work, and in partnership with four Changing CARE projects that began in 2017, we have engaged with 450 family caregivers and 605 providers in the discovery phase of co-design. The learnings from this phase of work were shared widely in Ontario in a 2018 report: Lessons from Changing CARE, The Discovery Phase of Experience Based Co-Design.   

It’s safe to say that we’ve found a successful recipe for change – co-design with patients and caregivers –and we’re well on our way to using it to change the experiences of caregivers in Ontario in the same way we did for patients. In a few years, we are hopeful that family caregivers will see the positive impacts of the same kind of system-wide change.

WHAT’S BEING SAID

Where do #caregivers go for information and supports? We gained insights from our survey with 800 caregivers for the Spotlight on Ontario's Caregivers however we wanted to hear from our Caregiver Advisory Panel members as well. Check out what they said: bit.ly/2KJpOOm pic.twitter.com/WJG3ehZI0X