5 Ways to Engage Patients and Uncover Invisible Insights

Patient and care coordinator engagingIn 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?

5 Features of a Sustainable, Integrated Health Care System

Image of glass lens looking at health care team, from patient's perspective
“We need to build an integrated health care system from the patient’s perspective outward.”

Many thoughtful leaders have taken strides toward creating a sustainable, patient-centred, integrated health care system but we’re not there yet.  Our patients, their families and evidence tell us there are opportunities for improvement. Through our front-line experience caring for 11,600 patients each day, we also know that to deliver quality home care, we need an integrated system that wraps care around the patient.

As in any sector, sustainable success is rooted in engaged teams effectively connected first through a common goal.  Health care is no different. As many leaders agree, form must follow function.

When I arrived to lead the Mississauga Halton Community Care Access Centre (CCAC) six years ago, this meant re-building a siloed organization. We fostered interdependent teams by connecting them with shared, measurable goals and a united vision. For Ontario’s health care system today, this means building an integrated system of care from the patient’s perspective outward.

If we start with structure, it is like planning a house without a location. You could well design a house that’s set to fall or flood, if you don’t know it’s going to be built on a cliff or levee. It’s also precarious to plan without full context in a fluctuating environment like ours, with its aging population and continual changes to support their rising needs, from funding reforms to new providers and evolving technologies.

To see the patient’s perspective, we need to step back and ask: ‘Why’ does the current system fall short of delivering an experience that consistently meets or exceeds expectations? Why is it not consistently responsive to patients’ and their families’ needs?

Using Home & Community Care to Overcome Obstacles

When I worked for more than 18 years in acute care, we knew that engaged and cohesive teams generated better outcomes for most patient populations.  We worked hard to involve physicians right up to the discharge door but that’s where our care ended.  To make way for those with time-sensitive, urgent needs, we discharged patients once they no longer required acute level care but sometimes before their post-discharge care was in place.

Then hospitals began to change how they delivered care and began moving alternate level care (ALC) patients to places better able to meet their needs.  Leaders saw community as an enabler to support this transformation and achieve their hospital’s goals. We also started to understand that patients and families wanted to remain at home and out of institutional care, as much as possible.

However, we had a blind spot to the role and impact of primary care physicians, nurses, allied health professionals, community service agencies and others in the continuum of care but beyond the hospital’s walls. We also had yet to realize the vital role of caregivers and families. Community was a disparate anchor. People moved back and forth between community and acute care, often multiple times a year.

Challenges in delivering consistent care experiences for our patients increased as the number of aging patients, with chronic and complex needs, rose. Without comprehensive capacity and program planning, our blind spot included socio-economic or cultural status obstacles that stopped patients from reaching their goals. It’s hard to heal when you can’t afford medication or have no means to safely travel to a clinic. Subsequently, a short hospital stay with an early discharge is detrimental when a patient returns less than 30 days later. Patients expect and deserve better outcomes.

In bringing care out of institutions and closer to patients’ homes, we shed light on these obstacles. Through meaningful conversations and assessment tools, home and community care went beyond clinical needs to identify social determinants of health that affect our patients’ care experience. We started to address these challenges through care coordination, which significantly reduces patients’ health risks, among other benefits. We also engaged families and set-up patients’ support services before they left hospital.

For Sam, a 66-year-old, frequent emergency department (ED) patient, who suffered from COPD, alcoholism, diabetes, hearing loss and depression, plus fear of eviction from a derelict apartment – healing was secondary. By the time Sam’s family physician referred him to CCAC, he was malnourished and in a desperate state. Our care coordinator had to first get him an accessible phone, re-channel his OPGT funds to pay his bills and fix his fridge. Once she addressed these necessities, she could set up medication management and coordinate his care plan.

Health care resources alone can’t meet all patient needs. Patients, like Sam, often need multiple partners at the community level, such as mental health and addiction services, volunteer or cultural groups, to play a complementary role in helping them reach their goals.  The challenge is our system’s design is incomplete. We have not intentionally designed a community care system to meet the needs of aging residents with complex needs. It doesn’t optimize the value of community-based services or integrate them to improve patient outcomes. In a more cohesive system, health care and community partners might have closely monitored Sam’s condition and alerted CCAC sooner. It might have also co-located services together, such as placing on site showers with personal support workers (PSWs) at Adult Day programs, with counselling nearby, to help patients like Sam achieve their goals.

Seeking solutions, we collaborated with the Mississauga Halton LHIN, Central West LHIN and Central West CCAC to develop a Community Capacity Plan in 2013. For this study, we contracted specialized health care consult support to assess our region’s health service needs now and the growing, future mandate. Results highlighted the importance of using patient assessments and information across the continuum of care to support population-based planning. These include Socio-Economic and Cultural (SEC) tools that can identify a neighbourhood’s needs, right down to those shared by people within the same postal code level or uncover areas where services are inequitably distributed.

The study’s findings also underscored the value that our current resources and best practices bring to our local system.

But to meet our residents’ expectations, we must resist the temptation to assess patient needs only through our lens. To design the system, we need to bring together data brought by clinical teams with patients’ and families’ expectations and goals.

That’s why our strategic plan is centred on understanding the patient’s voice. We need to listen and let it inform how we modernize the system or mobilize existing resources. By engaging our patients, through varied approaches, including our patient and caregiver advisory forum, we’re hearing about their needs.

Armed with insights from our patients and with our assets, we’ve lived a glimpse of this integrated vision through our seamless transitions: hospital to home approach. It reduced hospital readmissions in the first 30 days by 52 per cent in the pilot with Trillium Health Partners’ Medicine units and opened an opportunity to reduce ALC rates. In another example, we’re making great strides with Health Link. Through this provincial initiative, we’ve reduced the number of times patients with the highest needs visit the ED.

These programs prove that individual organizations, like our CCAC, can improve patient outcomes but not in silos.

Through this evolution of home and community care, our research and proven programs, I can envision a patient-focused, integrated health care system that:

  1. Seamlessly works with multiple partners to identify and address socioeconomic impacts on neighbourhoods and their patients.
  2. Recognizes care coordination as an essential health service for patients and supports its ongoing professional development to ensure consistent quality of care.
  3. Stays informed and measured by evidence from our patients and their families’ voices, as well as data drawn from assessments and SEC tools, among others.
  4. Collaboratively delivers care for patients at multiple levels, from patient and care coordinator partnerships to multidisciplinary partners, in acute, primary and long-term care, as well as mental health and addictions and community services.
  5. Provides ongoing monitoring and adapts to patients and their caregivers’ changing needs.

In future posts, I will discuss these features in more detail, with global examples, as well as our tools, ongoing initiatives and results.

I believe we can collaborate virtually with our multidisciplinary and community partners to deliver comprehensive, dynamic care that reflects each patient’s current goals, journey and experience. This also means making each partner individually and collectively accountable for our patients’ well-being.

I welcome your thoughts and feedback.