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?

3 Aspirational Milestones in the Patients First Marathon

Patients First Marathon

Image of Patients First baton being passed depicts goals the Ontario government health care leaders can realize through this legislation, if they effectively leverage CCAC or home and community care assets, as outlined by Caroline Brereton.Change is necessary for sustained and progressive success but it is rarely simple or easy. Such is the case with Patients First, new legislation that the Ontario government’s Ministry of Health and Long-Term Care (MOHLTC) first proposed on December 17, 2015 to improve the accessibility, integration and consistency of patient care across the province. This proposal has since progressed to Bill 41, the Patients First Act, which passed second reading on October 27, 2016. A key part of this legislation calls for integrating Ontario’s 14 Community Care Access Centres (CCACs) into their corresponding Local Health Integration Networks (LHINs).

Since its introduction, Patients First’s proposed design has and continues to evolve. The due diligence to advance this change is also shaping it by shining a light on high performing parts of the current system.

A noteworthy shift is the new context the MOHLTC placed around reintroduction of the legislation. Essentially, the narrative about CCACs has changed to be one about building on the strength of the current home and community care sector. Minister Eric Hoskins has said on numerous occasions: “This is not about fixing a broken system but leveraging the assets within the CCACs for the broader good.”

These assets include people, processes and technology. On the people side, initial integration talks cited the need to have CCAC care coordinators in hospitals and physicians’ offices as a key goal. Digging deeper, many learned that care coordinators have been working in hospitals and connected to physicians’ offices for years. In fact, this practice made it possible for care coordinators to help 210,000 Ontarians transition from hospital to home with a warm hand-off in 2015/16. We all know now this practice is working.

Instead, we need to focus on how to effectively optimize the relationships between care coordinators and so many parts of the system, such as primary care, acute care, working with home care providers, community resources and in patients’ homes. In my first post, Sam’s story demonstrates how our care coordinators use these relationships to help patients, even those with complex health and socioeconomic needs, to stay out of hospital.

The new system can also leverage process and technology assets. The MOHLTC is seeking a dashboard with readily accessible information to help it assess how the home and community care system is functioning, both pre and post-integration. There is now clear recognition that all CCACs use a dashboard, of various levels of sophistication, to provide oversight and inform decisions. Our care coordinators use Insights, an interactive dashboard, for multiple purposes, from planning patient visits to measuring their outcomes. The Ministry can adopt and adapt an existing CCAC dashboard.

This expanded understanding of the capacity to apply CCAC’s, as well as other’s assets, to the system’s greater transformation, opens opportunities for us to achieve several aspirational milestones or goals that put patients first. Here are three goals Patients First can realize, if health care leaders effectively leverage these assets:

Aspirational Milestones or Goals

1. More Engaged Primary Care Providers to Help Patients Achieve their Goals

A great benefit we can realize is having a system that makes it easier for primary care providers (including physicians, nurse practitioners and physician assistants) to interact with the broader community of support services that help patients achieve their goals.  This includes creating stronger connections between primary care and community resources that address a patient’s socioeconomic or cultural needs, as well as publicly funded services.

Through our care coordinators’ experiences, we know how crucially important primary care involvement is to ensure our patients have the best outcomes but it’s not easy for these providers to interact with our current, intricate community care system with its multiple access points.

Patients First legislation contemplates better understanding, planning and support for primary care and a future with expanded roles to complement their practice. These roles will involve primary care providers more closely in the planning for home and community care at the regional, neighborhood and patient level.  For example, this means that a family doctor will know that patients like Yasmin, a single, Urdu-speaking senior, who suffers from depression and diabetes, are connected with a local cultural or faith-based group, as well as home and community services.

2. Inserting the Voice of the Patient and Caregiver in Planning

The new Act sets a requirement for each LHIN to have a Patient and Family Advisory Committee to support community engagement. This offers the potential for LHINs to have and use a greater line of sight about what’s important to patients and families in their day-to-day planning.

All CCACs have experience with patient engagement strategies, and can bring that knowledge of how to involve patients and families into the LHIN’s planning work.

In 2014, we established Share Care Council – a highly structured and successful patient and caregiver advisory forum. It includes 15 patients, substitute decision-makers and family members, who volunteer their time to provide input into new programs and services. Share Care Council applies a carefully defined approach that authentically engages patients and caregivers to elicit their valuable input.

What’s eye opening is Share Care Council members’ responses to questions about how our programs can best meet their needs. We don’t hear “We need more personal support workers (PSWs) or more nursing care.” Instead, they tell us about their care experience, how it made them feel and how our system design can do better. It is less about the technical elements of care and more about the soft touches, social interaction and how these services are delivered that make the difference. For patients like Hilda, it’s having a PSW who knows how to braid her hair and set her up in the chair by the window when she leaves.

Through this requirement, the expanded LHINs can discover that when you carefully engage with patients and families on your journey of continuous quality improvement, their experience can drive development of meaningful programs and changes to care.

3. Organizing Home and Community Care around LHIN Sub-regions

A third advantage is the legislation’s shift to organizing delivery of home and community care around a LHIN sub-region, with consistent, service providers.

Our capacity plan research told us that people’s social, cultural and economic status often varies significantly between our neighbourhoods. So having care providers who are familiar with their patients’ neighborhood and its existing support resources (provincially funded and others) helps ensure successful home and community care delivery.

We also know that having a minimum number of consistent service providers who interact with our teams and patients/families builds strong relationships. Furthermore, this approach helps create high performing teams, whether virtual or in-person, in each patient’s circle of care.

With a goal of being able to identify local resources, numerous CCACs have begun reorganizing their care coordination and service provider teams around these LHIN sub-regions.

In our region, we’ve reorganized patient care around neighborhoods, so that patients, like Betty and Patty, can receive the services they need from consistent providers, who know their community and are located near their home. Organizing services around LHIN sub-regions or neighbourhoods gives service providers a greater connection with the communities where they deliver care.

I believe there’s much to be gained through LHIN sub-region planning but it’s complex work and should be viewed as part of a long-term vision or marathon.

 

On the flipside, implementing Patients First also poses risks, which I believe health care leaders need to dodge. I will outline three of these risks in my next post.

What do you think? Are there opportunities I’ve missed or points you’d like to add? Please share your comments at the bottom of this post.