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 Ways Collaboration Expands Health Care Capacity

We know that to help our patients achieve what’s most important to their wellbeing, we need to bring clinical care and social determinants of health together. But to realize a patient-focused, collaborative and integrated health care system, we must focus on fostering strong relationships with everyone in a patient’s circle of care.

As I mentioned in my first post, collaboration is a key feature of a sustainable, integrated health care system. It’s also at the root of home and community care. Care coordinators are connected throughout the health care system. They work with patients and families, hand-in-hand, to co-create tailored care plans that may involve nursing care, Adult Day Programs, personal support care, occupational or physical therapy, mental health and addictions or other services.

In fact, results from the CCAC’s Community Capacity Plan highlight the importance of care coordinators, patients and caregivers working together at multiple levels. The plan also cites the value of collaboration between multidisciplinary partners, such as health care professionals in acute, primary, long-term care, mental health, addictions and community services.

1. Collaboration Leads to Innovative Programs

Primary Care Advisors

While care coordinators collaborate with patients and caregivers at a clinical level, Primary Care Advisors (PCAs), who are currently unique to the Mississauga Halton LHIN, work as trusted points of contact for primary care physicians and gather feedback to improve patient outcomes and experiences. They also meet regularly one-on-one with primary care providers to keep them informed about LHIN-wide programs, services and initiatives.

Before meeting with PCAs last year for example, many physicians weren’t aware of the support and scope of expertise CCAC palliative nurse practitioners can provide to help them care for their patients and families.

Through the PCA-physician collaboration, which began in 2015, we’ve learned two important lessons:

  • We need to effectively coordinate services to address the socioeconomic and cultural (SEC) impacts on patients
  • Care conferencing, where multidisciplinary partners meet to discuss how patients’ needs are or can be met, is vital for the success of patients’ care plans
Health Links

Meanwhile, through the province’s Health Links initiative, we’ve seen multidisciplinary partners, including: primary care providers; specialists; care coordinators; other allied health professionals; community service providers; hospital clinicians; social workers; and those working in long-term care homes, engaging with each other to coordinate care for the top five per cent of our province’s patients with the most complex needs.

When it comes to health care, turf and structure don’t matter to patients. Patients don’t care where their care is coming from, or who developed the approach to their care. What matters to them is having maximum opportunity to achieve their health goals. That’s why Health Links, which has seen care coordinators going beyond their traditional roles, has succeeded.

And as this network expands, Health Links can evolve from a program approach to a philosophy of collaborative care where patients receive the level of care coordination they require to support their health. The term “Health Link patient” would then become obsolete, as patients with complex needs will simply receive timely and quality care to match their needs.

2. Collaborative Information Exchange Increases Knowledge

To evolve collaborative, innovative initiatives, health care providers need to share knowledge about the best ways to help patients and families succeed in their care plans.

As Ontario’s CCACs integrate with their corresponding LHINs through the Patients First legislation, one of the most valuable assets they can bring is their capacity to ethically share valuable knowledge and information about their patients. As I outlined in “4 Ways Big Data Informs and Manages Health Care Performance,” accessing patient data from experts across the continuum of care enables us to obtain a complete picture of each patient. We can also use it to learn about the broader population’s needs and identify opportunities to improve each patient’s experience.

As the CCACs and LHINs integrate, I also see a significant opportunity for LHINs to build stronger connections between primary care providers and community resources. Within this new structure, LHINs can become true collaborators, forging connections with various health care providers and creating new knowledge to share across the continuum of care.

To do this, we need to move beyond our walls and not let current management structures constrain our capability to exchange insights that help our patients. My philosophy has always been that structure exists to manage an organization, but to deliver on an organization’s mission and vision, we need to operate in teams across the continuum.

That means we need to share information, which has traditionally been one of the most protected assets in health care. Since their inception, CCACs have been working to integrate information from their Client Health Related Information System (CHRIS) or electronic patient health record system, in as many ways as possible. This integration includes connecting with hospitals and enabling health care partners to document patient updates online in CHRIS records. And as CCACs integrate with the LHINs, CHRIS will become a provincial asset, with information more readily accessible to those in each patient’s circle of care.

But sharing data isn’t enough. We also need to also collaborate on projects and share approaches that work. Ontario is known for its numerous pilot projects. We regularly see exciting new, innovative programs developed throughout the province. Unfortunately, we continuously fail to spread knowledge and increase awareness of approaches that work. We seem to be constantly reinventing the wheel. Why is that? One reason is that as a provider-driven system, individual providers are motivated to deliver innovative solutions that earn recognition, which may lead to increased funding. But our patients and families see the health care system as disjointed, bouncing them from one heath care silo to the next. We have to turn our thinking on its head and see success through our patients’ lens.

3. Working Together to Wrap Care around our Patients

For a long time, hospitals have been the hub of knowledge and care – but as I mentioned in my first post, clinical care alone can’t meet all patient needs. Those patients with complex and chronic needs often require health care services from multiple partners at the community level. The challenge so far is we have not deliberately designed a community care system that meets the needs of aging patients with complex needs. Our system is not set up to connect clinical care with other necessary supports to address socioeconomic issues and ultimately improve patient outcomes.

One way forward is to create “health care hubs.” Health care leaders can use existing assets in certain LHINs to develop these hubs, which would serve as physical spaces within communities that vary between neighbourhoods. These hubs could be attached to primary care practices, seniors’ centres, home and community care clinics, hospital urgent care centres or community health centres.

This holistic approach to care aims to bring the right care to the neighbourhood in which our patients live. In these community hubs, we’d see various health professionals – including care coordinators, geriatricians, professionals from Adult Day Programs and Falls Prevention Programs, neighbourhood-based nurses and personal support workers – working together to closely monitor their patients’ conditions.

Over time, this capacity to collaborate and wrap care around patients in their communities would be virtually everywhere.

As we continue to revamp the health care sector and develop new approaches to care, we have to rely on the experiences of our patients and their family members. To do this well, we need to learn more. We need to engage our patients to uncover invisible insights about their challenges and goals, which I’ll address in a future post.

What do you think? What other ways do you think collaboration can expand health care capacity?