Over the last decade, the health-care sector has been experiencing a culture shift around patient engagement. We are now starting to walk the talk around partnering fully with patients both in their own care, and in organizational and system-level decision-making and leadership. There is scarcely a healthcare-related conference that doesn’t feature key patient experience panels, roundtables or exhibits that help build our collective knowledge and share best practices. At the recent Canadian Association of Paediatric Health Centres annual conference, patient and family engagement sessions and patient experience was shared throughout a broad range of panels and workshops.
There are a couple indicators of Ontario’s emphasis on the patient experience in health care. The 2010 Excellent Care for All Act aims to put “patients first by strengthening the health care sector’s organizational focus and accountability to deliver high quality patient care” and outlines, for example, the role of patients and families in developing quality improvement plans and enhancements to patient relations processes. Also now embedded in the act – Ontario will soon have a patient ombudsman to help patients and families with unresolved concerns. The legislation represents a formal expression of the deepening sense of the importance of including patients across the health-care continuum to lead to better patient experience, better health-care outcomes and perhaps even greater efficiency and lower cost. In February of this year, Ontario released the second phase of its action plan on health care calling it “Patients First” with the goal to “transform our health care system into one that puts the needs of patients at its centre.” Our experience in Ontario is part of the worldwide momentum for implementing patient-centred care best practices.
The shift at Holland Bloorview
At Holland Bloorview, we made a significant shift about five years ago with the development of our Family Leadership Program. While we always believed in the importance of the child and family in excellent care, it was only with strategic emphasis and investment (supported by generous donors) that real transformation became possible. The Family Leadership Program was created in partnership with our clients and families and provides the formal framework to ensure we engage our young clients and their families in all aspects of the hospital from key hiring decisions, to policy development, to operational and strategic planning.
We believe that partnership with clients and families is critical because of who we are and the role we play in health care. Holland Bloorview is Canada’s largest children’s rehabilitation hospital. We provide Ontario’s only pediatric inpatient rehabilitation as well as outpatient care to kids and youth with a range of disabilities, injuries and complex health and rehabilitation needs. Our Bloorview Research Institute conducts applied clinical research that informs care at the hospital and across the globe with specialties in acquired brain injury, child development, and participation and inclusion. Through our full academic affiliation with the University of Toronto and in collaboration with other academic institutions we train physicians and a wide variety of other health disciplines.
Clients and families drive positive change
Over the years our Family Leadership Program has evolved and grown beyond what we ever anticipated, in large part because our clients and families were driving many of the improvements, and challenging us to continue to broaden and deepen what it means to bring clients and families into the heart of all we do.
We now have well-established advisory committees for families, youth and children. Through our Children’s Advisory Council for example, clients and their siblings, as young as three years old, are directly advising on service and care improvements and informing research projects.
We’ve pioneered a family engagement committee dedicated exclusively to advising on research initiatives in our Bloorview Research Institute. Family Leaders also sit on all of our committees across the hospital and on the Quality Committee of the Board of Trustees.
All of this is only possible because we value patient engagement, we make it a priority, we teach it and we measure it. For example:
- We have a strong Client and Family Integrated Care team who partner with clients and families to ensure their voices are at the table and our employees, students and volunteers have the tools and resources they need to embed client and family centred care into their daily practice.
- New employee orientation includes a session with a Family Leader to illuminate what client and family centred care means.
- Interprofessional simulation training on client and family centred care was co-created with families who shared their real-life experiences that were developed into the simulation scenarios.
- We guide and provide ongoing training for our Family Leaders, so they have what they need to participate fully.
- At Nursing Practice Council each meeting starts with “storytime,” an opportunity to share a client or family experience to provide context for the work those nursing leaders must accomplish.
- When our Bloorview Research Institute hosted “One Voice,” the international symposium on pediatric concussion, the conference began with a lived experience panel featuring children, youth and parents.
- Hospital orientation for the new President and CEO of the Holland Bloorview Kids Rehabilitation Hospital Foundation began with a Family Leader sharing her story.
These examples just touch the surface of how patient experience guides us across the hospital.
Measuring the authenticity of our partnerships
Engagement is leading to better outcomes. In our hospital, our patient web portal was designed in partnership with clients and families to be patient (rather than provider) centric and now our clients and families have improved access to their health information which is leading to more informed discussions with doctors, nurses and therapists.
To ensure we continue on the right track, we measure the quality of our partnerships with clients and families through an authenticity survey. Families tell us what is meaningful to them and, in turn, we can improve how we engage. For example, based on survey results, we’ve increased staff education around client and family centred care. We also include the survey as an indicator on our quality improvement plan with results monitored by the Board of Trustees.
This has not always been a smooth and easy road. At the beginning of our culture shift, our clinicians were concerned about how we would “manage” families’ expectations and they also had genuine concerns about our families having limited time to participate given the health-care needs of the kids for whom they care. We didn’t need to worry: five years later we have over 150 Family Leaders and the number is growing.
In the beginning we showed we had a lot to learn. For example, at one of our first engagement meetings with clinicians and families, our families cancelled last minute because their children were sick. But we learned from our mistakes. We devised strategies to engage a larger number of families and identified ways to reduce barriers to participation such as providing childcare.
To this day we experience creative and productive tension. We don’t always agree! But some of the challenging moments enable the greatest change and it is incredibly gratifying to see the parent who started off frustrated become a Family Leader and a change maker within the organization.
Now it would be inconceivable not to have clients and their families at the table as full partners at Holland Bloorview. As I was interviewing for the role of President and CEO of the hospital, it came as no surprise to me that a Family Leader was on the interview panel.
We know that by working collaboratively we can continue to improve care at the hospital. We will continue to share our experiences with other organizations and strive to impact the health system. It’s a journey. We are not done. With clients and families as partners we know we won’t go wrong.
Hear from a number of Family Leaders at Holland Bloorview about what authentic engagement means to them.