Reflecting on the Journey of Patient Engagement

By Carol Fancott, Director and Angela Morin, Patient-Partner | 28 Feb, 2018

Since 2010, CFHI has been supporting teams to build their capacity to meaningfully engage with patients and families.  Although the concept of patient-centred care’ has been around for decades, and there have been movements demanding more rights for patients to be involved (e.g. from persons with disabilities, HIV, paediatrics, mental health), in 2010, we were still in the early days of ‘patient engagement’ as we know it now, however, the notion of recognizing the value of (and hence actively seeking out) the lived experiences of patients and families to improve care and drive system change is a more recent phenomenon in Canada.  Not only seen as the ‘right thing to do’, there are increasing legislative and policy demands on organizations to ensure that they are engaging with patients across the health system. As CFHI has supported the work of engagement as a catalyst for improvement, we recognize that organizations are at different points along the journey to fully embed the perspectives of patients and families in these efforts. 

While patient engagement may seem like a buzzword to some, the next ‘shiny thing,’ we see the reality of patient engagement and its important role to design, deliver and evaluate health services. Patients are an untapped resource and are perfectly positioned to take a more active role – not only in partnering with their healthcare providers to determine their care – but also together with teams of providers and leaders to shape how healthcare is organized, how it is delivered, and yes, how it can be improved.

When we involve patients and caregivers, everyone benefits.  

It’s about bringing the unique and diverse perspectives that only patients can bring, of recognizing their ‘expertise by experience’ to help shape organizational design and governance and policy. When done well, meaningful and purposeful participation provides an opportunity for patients, caregivers, healthcare providers and administrators to collaborate to create better healthcare experiences, improve patient safety and quality, and improve health outcomes.

However, meaningful engagement is not just about what patients and caregivers do, it’s also about what organizations do. Organizations need to support and role model engagement by creating opportunities for input and shared decision-making at all levels. A collaborative approach encourages everyone to share their experiences, ask questions, and challenges the status quo. By ensuring patients and caregivers are active participants and embedded in decision-making structures, organizations can begin to build patient experience into how we deliver healthcare.

In many ways, I feel like I have come full circle with CFHI.  I was one of the ‘early adopters’ in CFHI’s first ‘Patient Engagement Projects’ initiative in 2010, and I think back to many other leaders from organizations across Canada with whom I still stay connected and continue to learn together with and from. We remain passionately embedded within this field as we all strive to keep the patient voice at the forefront of the work we do. I think back to some of this early work, when we are all asking ourselves: how can we meaningfully partner with patients and families in our work?  What does patient engagement mean? What can we do to support patients and families to work with us?  How can we prepare staff to welcome the perspectives of patients?  What impact are we having when we engage with patients in our work?

Since arriving at CFHI last year, I have had the opportunity to reflect on how rapidly the field has evolved over the past decade – from the early projects that focused on developing infrastructure to support engagement activities – to the more recent that have worked specifically on policy and quality improvement initiatives, co-designing processes and systems of care with patients and families to implement new patient-centred practices.

Through the collaboratives that CFHI has supported  we’ve heard many voices and learned many lessons. To share these insights, we developed two “tips sheets,” one based on what has worked for healthcare providers and leaders when partnering with patients and caregivers in their quality improvement initiatives, and the other based what works best for patient and family advisors to partner and contribute in meaningful ways.

Each provides a series of ‘lessons learned’ on how to facilitate the engagement process, and how patients and providers may work together on improvement efforts. We hope these tips sheets will help you on your own patient engagement journey and support a more patient-centred approach to improvement initiatives.

The engagement practices shared in these tips sheets may provide an opportunity for you to reflect on experiences you have had, or validate what you may be doing already.  

I also encourage you to check out the hashtag "#HowNotToDoPtEngagement", started by @couragesings, inspired by a blog written by Isabel Jordan - providing patient perspectives that I think are congruent with some of our CFHI lessons learned on ‘how to engage’ from patient and provider perspectives.

By working together to design, implement and evaluate improvements, we help organizations understand and create the winning conditions to accelerate healthcare improvement. It’s happening now. We hope these tools will help you on your journey.

Angela Morin and Carol Fancott

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