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?

4 Ways Big Data Informs and Manages Health Care Performance

Big data for health

computer system graphic with home care images showing how big data informs and manages CCAC patient care In my first post, I outlined five features of the patient-focused integrated health care system that I envisioned. The third feature is 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.  This post focuses on part of this feature: the value of big data in health care performance.

Today, physicians, therapists, nurses and other clinical experts each use different tools to assess patients’ needs and record pertinent information to manage their care. The clinical expert learns about each patient, their past, current conditions and needs but once a patient  moves from one setting, like a family physician’s office, to another, like a hospital, the process usually repeats. Time is lost to redundant questions and similar assessments, while some details remain a mystery, known only to one setting’s care providers.

In the home and community care sector, we securely share our assessments, plus other data, within and across our CCACs to uncover evidence-based insights that inform and manage our patient care decisions. And when a hospital discharges a patient to a CCAC, which coordinates care with their service provider, the patient’s information follows them. But these scenarios are the exceptions. CCAC also coordinates care with other organizations in the patient’s neighborhood but the ability to appropriately  share that information in real time is currently not a standard.

For patients like Yasmin, a frail senior admitted to the emergency department with a broken leg, the clock ticks while her frantic husband recalls her medical history. Tests are run to assess her bone density, anesthetic threshold and other details her family physician already has on file. Meanwhile the backlog of aging patients with urgent needs builds.

To meet the needs of a rapidly growing older population with multiple or complex care requirements, there’s a rising imperative for more integrated systems. We need to access data from clinical experts across the continuum of care to see a complete picture of each patient, learn about the broader population’s needs and identify system opportunities to improve people’s experiences.

Organizations are working to eliminate redundancies by creating one electronic health record (EHR) for each patient, which is shared and understood across the continuum of care, but much needs to be done.

At the Canadian Home Care Association’s 2015 summit, I heard about Belgium’s work as one of the first countries to share a single assessment record per patient between multidisciplinary clinical experts and across various care settings. Dr. Anja Declercqu outlined how BelRAI, its evidence-based assessment solution, enables home care organizations, hospitals and long-term care homes to securely exchange patient data with each other. She also cited challenges, as health partners were still learning to trust each other’s assessments, but their progress was impressive.

If Yasmin lived in Belgium, all clinical experts would quickly know her history and conditions, as she moved between care settings to have her fracture set and safely return home to heal – faster and at less cost.

With a more integrated system, we will be able collaborate and coordinate our patients’ care with other members of their care team. Working together, will also deepen everybody’s understanding about the unique contributions each sector brings to the continuum of care and foster conversations about what needs to improve.

We are moving closer to this ideal in Ontario and can increasingly use big data to:

1. Address each patient’s needs

Care coordination begins with thoroughly assessing each CCAC patient’s health care and social needs, as well as learning about their goals. Our care coordinators combine this assessment data with their clinical expertise to inform decisions around a care plan that will best meet their patients’ needs. Ontario’s CCACs are gradually adopting InterRAI, an international version of Belgium’s BelRAI assessment solution, recognized worldwide for supporting best practice patient care. It will empower our frontline teams to develop more personalized evidence-based care plans, centred on each patient’s experiences and goals.  And in a patient-focused, integrated system, a patient’s single, electronic health record will follow them, as they move between care settings, versus multiple records across the continuum of care.

2. Understand neighbourhood level needs –

Data also helps us understand the patient populations our organizations serve. It shows us people often live near those who are like them and may think, work and even approach their health care in similar ways.  Through our Community Capacity Plan study, we learned that a community care organization delivers better patient outcomes if they are familiar with the neighbourhoods where their patients live and receive their care. Our Care Coordinators need to know their local supports to an in-depth degree so they can develop a sustainable care plan aligned with their patient’s neighbourhood.

Knowing this, we developed Socioeconomic and Cultural (SEC) tools to help us understand a population or neighbourhood through data, such as income levels, average persons per dwelling and the percentage of dwellings owned, versus rented. For example, this data shows us that patients in a neighbourhood with a high SEC, are 40 per cent more likely to visit the emergency department, than those in other areas with a low SEC.

Viewed together with other population health information, these data points build a picture of a neighbourhood’s needs. These insights inform current home and community care services, including those to address a patient’s social determinants of health, as well as their clinical needs.

This data helps identify areas where services are inequitably distributed and is invaluable to long-term health system planning. When we plan neighbourhood clusters or community service hubs of services, there’s no need to arbitrarily put a pharmacy here or a chiropractor there. We can drive these decisions by evidence-based patient population needs, which we know, right down to the postal code level.

3. Coordinate care across the province –

I wonder if many realize that CCACs have an electronic health record for every patient they serve.  Our Ontario-wide Client Health and Related Information System (CHRIS) was developed by our provincial organization and CCACs. We rely on this web-based system to manage all aspects of each patient’s care, along with reporting and finances.

eHealth Ontario used CHRIS as a core part of its ConnectingGTA solution for CCACs and hospitals across the megacity to securely share electronic health information about its residents.

We’re now looking for ways to extend CHRIS access to other partners in the system. Then, it could take us beyond neighbourhoods to uncover regional trends and identify barriers that may be limiting patient outcomes.

4. Monitor and optimize resources –

Data doesn’t just inform patient care decisions, it can also manage ongoing performance. To help our teams decipher the data they need to manage all aspects of each patient’s care in real time, we developed ‘Insights.’ 

On a personal level, this interactive dashboard enables care coordinators to measure their own performance against consistent guidelines for exceptional care.

From a broader organizational perspective, clinical managers can use this tool to track resource use, patient outcomes and performance to identify issues or best practices. But why stop here? Insights can be adapted and its scope expanded to oversee performance in other care settings for an integrated people-focused system.

Our community capacity plan showed us one of our biggest opportunities lies in leveraging our current resources to build capacity, including the people, technology and processes that define how we use data.

In 2013, we looked at data across all care settings to build a comprehensive picture of our community’s needs in the next 10 to 20 years, particularly within the borders of our Health Link neighbourhoods. We saw how hospital, long-term care, community support services and CCACs currently use resources and we identified opportunities for improvement. And we used modeling to project what optimizing those resources would look like, if we had no new money to where we should invest to create the best outcomes for our patients, when resources are available.

If our health partners effectively leverage our assets, we have a shot at reaching Belgium’s ideal and optimizing our ability to care for people across Ontario.

With its Patients First legislation, the Ontario Ministry of Health and Long-term Care intends to establish sub-regions (LHIN sub-regions) within local health systems to plan performance improvement and more equitably integrate services at a community level.

Our CCAC has been moving in this direction for some time, re-aligning our care coordinators and contracted service providers around neighbourhoods that are similar to LHIN sub-regions. This model offers several benefits. Among others, these include addressing socioeconomic impacts and inequities, which I’ll discuss in my next post.

What do you think? Are there other ways we can leverage big data to improve patient outcomes and experiences?

3 Hurdles to Dodge in the Patients First Marathon

Patients First Hurdles

Image of runners hurdles with Patients First cover depicts obstacles the Ontario government health care leaders should watch out for with this legislation, particularly those impacting CCAC or home and community care, as outlined by Caroline Brereton.In my last post, I discussed three goals Ontario’s Patients First legislation can potentially realize, if health care leaders effectively leverage Community Care Access Centre (CCAC) assets (people, processes and technology), as well as other organizations’ assets.

On the flipside, I believe health care leaders need to dodge the following risks when implementing Patients First:

1. Working in Silos without a Shared Understanding of Vital Design Principles

We need to work collaboratively, with a shared understanding of the design principles that are essential to a high-functioning, sustainable system.

As I outlined in my last post, we have an opportunity to build stronger connections between primary care providers and community resources. This means designing a system that enables everyone in the circle of care to easily engage with each other in the course of patient care.  For this to succeed, all parts of the system must optimize resources and work collaboratively.  It is contemplated that the LHIN sub-regions will enable this collaboration and integration.

Implementing Health Link helped many patients with complex needs but it also put us precariously close to creating parallel systems to care for those patients. Once this challenge was recognized, changes were made to streamline care and use resources in a more sustainable manner.

This time, as we think about LHIN sub-regions we have an opportunity to step back and identify the shared system design principles that need to be in place, before we move forward.

2. Paying Scant Attention to CCACs’ Proven Culture and Leadership

There’s a risk that in integrating CCACs into the LHINs, health care leaders may pay insufficient attention to proven aspects of the existing home and community care’s culture and leadership. While not perfect, we know that to deliver care in the community, enter people’s homes, work with a diverse, virtually connected workforce and their supports, a unique culture is required. This culture is led by a dual focus on system planning and care delivery operations, which include supporting care coordination, monitoring quality, patient outcomes and service providers’ resource use to ensure those with the greatest need, receive care.

Conversely, LHINs currently require a different type of culture and leadership to meet different mandates, which exclude patient care.

Effectively integrating each organization’s culture and leadership is a huge challenge. CCAC assets (people, process and technology) will be under-leveraged if this part of the expanded LHIN’s mandate receives minimal attention. Focusing on system planning at the expense of leading care delivery, could also mean that one or thousands of patients stay in hospital longer than needed, due to oversight shortfalls. This is far from ideal when systems are constrained.

Understanding the magnitude of the responsibility they are taking on, LHIN board members raised early concerns about potential conflicts for new boards as they communicate their focus after integration. Boards will need support to pay significant attention to their care delivery operations to ensure they set high standards for care quality and oversight.

3. Assuming an Easy, One-Day Transition and Disrupting Vital Processes

Some people may assume integrating two distinct organizations is an easy process with an immediate transformation point, where teams cross over to a new governance structure with new projects. In doing so, they could put the opportunity to leverage existing CCAC assets and progress in peril.

Patients First impacts the expert implementation skills and other strengths within the current CCAC system. These skills include a solid understanding of the current home and community care system and service providers’ performance, plus the leadership to ensure patients/caregivers have quality experiences. It also has the potential to disrupt the support systems developed to manage care in homes and a virtual workforce.  These systems must be adeptly integrated as part of a long-term marathon, not a sprint. This work currently underway in the CCACs includes many strategies that are planned or in motion to continuously improve home care delivery.

There is a significant risk that through integration we will disrupt current culture, process, teams and technology without understanding their value in effectively reorganizing around the LHIN sub-regions. Current initiatives need to be recognized and supported post-integration day to maintain positive traction. It’s critical how attention to that work is prioritized, pre and post-integration.

Fortunately, the MOHLTC has enabled LHIN boards to expand from nine to twelve and has been explicit in requiring directors from CCAC boards to be given consideration. Having this voice of CCAC governance engaged in LHIN planning will help mitigate this risk to patient care disruption but there is an urgency to expand these boards sooner than later.

As with a marathon, we are in the warm up phase. If LHIN boards are expected to plan now for the post-integration transformation agenda, the voice of CCAC governance and leadership at the local level should be reflected in that planning. Ideally, LHINs and CCACs should share and have a continuity plan in place for moving the collective agenda forward post-integration, with ongoing support for strategic home care work in progress.

Patients First is a marathon with a long-term agenda. Ahead of the starting line, it needs CEOs and governance to establish the culture necessary to succeed. This culture requires full engagement of primary care, home and community care, hospitals, LHINs, public health and others to propel it.

My team is ready to move forward toward the long-term goal of a more sustainable, integrated health care system that puts patients at the forefront. Are you?

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