In my first post, I outlined five features of a patient-focused integrated health care system that I envisioned. The third was a system that: stays informed and measured by evidence from our patients and their families’ voices, as well as data drawn from assessments and social, economic and cultural (SEC) tools, among others.

There is a real opportunity for our health care system leaders to understand what our communities, patients and families consider to be the best quality care they can receive.  Some believe we have this answer in the depth of knowledge, research and clinical evidence that we have and use to guide decision-making. Clearly, patients tell us: we don’t. Clinical data only gives us partial answers.

We need to effectively engage patients, caregivers and families, actively listening to their voices to uncover invisible insights for the rest of the answers. Only then can we fully understand what’s needed to shape a patient-focused system.

In a guest Leadership Lab column I wrote for the Globe and Mail earlier this year, I described ways a leader can engage with their stakeholders to steer their organization through complex change and mitigate risks. We may not have all the answers but when we engage, we bring our team, partners, clients or patients and other stakeholders’ questions, concerns and fears to the surface.

Of all our stakeholders in health care, patients are our priority and it’s important for leaders to continuously engage them, not just during times of change.

Here are five approaches that I found invaluable in my work leading a home and community care organization (Mississauga Halton CCAC):

1. Having meaningful conversations with patients –

If you directly ask a patient what their goals are, they might find them hard to articulate. However, they may enthusiastically express their joy in watching their grandson fine-tune his hockey skills or playing cards with their friends.

A skilled care coordinator starts the patient assessment process by gently having a meaningful conversation with their patient to learn what’s important to them and through this process, subtly uncovers their goals. This conversation also elicits feedback on how the patient wants their care delivered. With this insight, we can form pledges to patients on how they will ‘receive’ care, not just how we deliver it.

In 2015, the Mississauga Halton CCAC launched the award-winning Care Coordination Program of Work to drive consistent quality in our care coordinators’ varied competencies, while providing this essential service.  One competency is communications and we set specific standards and training to help each care coordinator guide these meaningful conversations and effectively engage each patient.

2. Partnering with each patient, their caregiver and family members –

Next to patients themselves, their caregivers and families are in the best position to help care coordinators, service providers and other funded resources understand their specific goals. Actively listening to our patients and partnering with their families helps us deliver on their expectations. And meeting or exceeding a patient’s expectations makes their health care experience that much better.

Patients, caregivers and families want to work with us to make sure their needs or those of their loved ones are met. And when they talk about how care is delivered, their requests are practical. They want to be treated with respect, participate in the conversation and have the opportunity to influence care decisions. To meet these requests, care coordinators work with the patient and often their caregiver or family to co-create a care plan they all agree on.

Based on input from patients and caregivers, our CCAC developed a personalized patient information package called ‘My Story’ to support this process and help patients be confident with their care.

3. Facilitating formal patient engagement forums to inform programs & services –

In 2014, our CCAC established Share Care Council – a structured patient engagement forum of 15 patients, substitute decision-makers and family members. Council members volunteered their time quarterly to provide input into new programs and services, on behalf of our region’s residents.

What I found most interesting is when we asked specific questions about program planning for the future, we didn’t hear “We need more PSWs or more nursing care,” even though we were at the lower end of the funding per capita, per senior resident in our region. Our patients and families understood the constraints of the system. Instead, they told us about their care experience, how it made them feel and how our system design can do better with the resources we do have.

For example, we asked what respite care or caregiver relief means to them. They told us it is temporary care that substitutes for the care provided by their loved ones or family members. It enables their loved one/family member to recharge, so they can continue to provide support. More importantly, they explained how this respite needs to consider how the loved one provided care, by understanding what matters to the patient, such as the way a chair is placed, the specific supports they need for reading or the companionship they seek. Essentially, they want support beyond the clinical care requirements.

Council members showed us the health system is not fractured in their mind. That’s why they find it frustrating when the care they experience falls short. It doesn’t matter whether they are a primary care patient, a hospital patient or a home and community care patient, they are simply a patient – in need, stress or crisis.

Feedback from our council informed many successful initiatives, such as My Story, our Health Links Patient Partnership (HeLPP) program and our award-winning Seamless Transitions, a new approach to help patients transition from hospital to home.

I’m pleased that the Patients First Act requires each expanded LHIN to have a Patient and Family Advisory Committee, like our Share Care Council, to support community engagement. This requirement offers the potential to put patients first by actively using their voice to inform day-to-day planning.

4. Establishing an Ombudsperson office for managing formal complaints –

Complaints are tough and call for intense, specialized interactions. We created an Ombudsperson role and dispute resolution process to address patient complaints that were complex and escalated beyond the care coordinator and their manager.  In a true service culture, point of care teams are supported to resolve issues as soon as possible and as close as possible to the patient and family. However, in the “complexity” of our health system design, “complex” complaints often involve multiple stakeholders across the system. Point of care teams need additional support. This office receives complaints via varied sources – from the patient or caregiver to the Long-Term Care ACTION Line.  The team uses specialized negotiation techniques to focus on the needs of each party with the end goal of achieving the best solution for everyone.

Time and again, we discovered a communications breakdown at the root of an issue. To address it, we needed to ask questions and create opportunities to hear the assumptions behind it. In our information overload world, we can’t assume all input is based on the best or most up-to-date information. We found engaging, even in challenging circumstances, often leads to clarity, prompts dialogue and helps forge solutions.

5. Encouraging broad feedback through formal measurement tools –

Each year, a third-party research firm conducted a Client and Caregiver Experience Evaluation (CCEE) survey of our patients, as well as those at CCACs across Ontario.

This standardized tool invited patients to anonymously answer a series of standard questions about the quality of care they received and how they felt about it.

These provincial comparisons of our local performance gave us a consistent way to assess how well we met patient expectations and opportunities for improvement. For example, through a deep analysis of this information we were able to uncover the need for greater consistency in our communication with patients. As described earlier, this finding led to our investment in the Care Coordination Program of Work and a turning point in satisfaction results with our services.

Through sharing what’s important to them, patients and families will help us as leaders evolve our organizations, make the system adaptable and responsive to their needs, as well as those of the next generation to come.

“It’s far more important to know what person the disease has than the disease the person has” – Hippocrates

What do you think? Can you think of other ways to engage patients and their families?  Can you share an example of how engaging patients helped shape a successful decision or initiative?