The Birth of an App to Improve Patient Care after a Stroke
It wasn’t her mother’s first stroke, but this one was different. This was clearly the last one.
Mid-morning sun filtered into the room of the nursing home where Pam Duncan’s mother had been moved just a few hours earlier after it became clear she wouldn’t survive this latest stroke. Duncan sat at the side of the bed, looked at her mother and thought of her own two young children. She pictured them growing up without their grandmother. She thought about how the bed in the nursing home wasn’t fooling anyone. It was essentially a hospital bed.
A physical therapist entered the room, interrupting her reflections.
“It’s funny the things you remember,” Duncan says. “What stands out was the physical therapist putting down the bedside rail to give my mother physical therapy.”
For most, the interaction sounds innocuous. But Duncan—a physical therapist herself at that time—felt a surge of anger at what were clearly unnecessary medical services for an incapacitated and dying woman.
When she objected to this treatment to the owner of the physical therapy services at the nursing home, she became even more disturbed.
“Why do you care?” was the response. “Medicare is paying for it.”
Her mother died that evening.
“That night has motivated me for my entire career,” says Duncan. “These services were unnecessary and inappropriate, but they were offered because there was a Medicare incentive to do so.”
Many of the details of that night have faded, including some of the anger Duncan felt. What has not dimmed is Duncan’s memory of her mother.
On her desk she keeps a tiny sepia-toned photo of them together at Duncan’s graduation—daughter is decked out in her gown and mortarboard while mother stands next to her. Together, they proudly hold up a pennant from Columbia University.
This is the image of her mother that Duncan chooses to keep close, a symbol of the motivation that ignited her 30-year career in stroke and neurologic recovery.
The Problem with Stroke Care
Today, health care systems largely focus on end of life and hyperacute stroke management. Insufficient resources are dedicated to prevent repeated strokes or to optimize recovery. These services might be able to impact the health and behaviors of patients.
This problem persists even though Duncan has dedicated the last three decades to addressing it. Since her mother’s death, she earned a PhD in epidemiology and worked her way to professor of neurology and senior policy advisor for health care innovations and transitional outcomes at Wake Forest Baptist Medical Center.
“Standard stroke care focuses on those 3-5 days of admission, and then the patients easily fall through the cracks,” Duncan says. “We don’t even understand at the point of discharge what patients’ abilities are to manage their risk factors and medications. That’s where the black hole is.”
“We have to get to the point where post-acute stroke care is a valuable point of health care delivery, too,” she says.
To fill this void in stroke care, Duncan and colleagues in public health sciences created a solution—a new assessment called the eCare Plan—that produces an individualized care plan for stroke patients and optimizes resources and services to give each patient their best shot at health and recovery. It’s administered through a digital application (the eCare App) downloaded to a tablet like the iPad.
“The eCare App takes precision medicine to a new level by developing an individualized care plan,” says Duncan. “We usually think of precision medicine as finding the gene to target a drug, but precision medicine also requires that we understand the patient from a broader perspective of their social and functional determinants in addition to their medical condition. This application brings a holistic approach to chronic care management by understanding patients’ physical, cognitive, social and emotional needs, as well as their caregivers’ abilities and resources.”
The Need for Individualized Care
Duncan didn’t start with a digital application in mind. The idea grew out of observing the inner workings of the health care system.
A few years ago Duncan was researching the root cause of readmissions of stroke patients at Wake Forest Baptist.
“It quickly became clear that we were missing the boat,” Duncan says. “We have outstanding acute stroke care, but for patients with mild or moderate stroke, neither the physicians nor the patients had a good understanding of what an individual patient’s new challenges would be after the stroke and the extent of the deficits that they might face.”
The Institute of Medicine—a division of the National Academies of Sciences, Engineering, and Medicine—acknowledges the influence of social and behavioral factors on health, going so far as to suggest that any electronic health record should also include these aspects of wellness. But while the Institute of Medicine says that medical systems need to capture this information, social determinants of health—like stress, depression and financial limitations—are not systematically recorded at the point of care.
Duncan’s research bore this out. When stroke patients were discharged from the hospital, they were provided with a list of their medications, but after patients got home a myriad of factors complicated actually taking the medications.
Some patients didn’t have the money to pay for the medications. Some didn’t understand when to take their medications. Some simply did not have a ride to the pharmacy to pick up their medications.
All of these non-medical factors can contribute to readmission due to falls or even re-stroke.
“We were not addressing the key issues that influenced patients’ abilities to manage their recovery,” Duncan says. “We needed a tool that could identify threats to a patient’s recovery and develop a specific recovery plan tailored to each individual’s unique circumstances.”
This tool simply did not exist. So they built one.
The eCare App
To tackle this problem, Duncan collaborated with Cheryl Bushnell, MD, director of the Wake Forest Baptist Comprehensive Stroke Center, and an interdisciplinary team of nurse practitioners, therapists, pharmacists, primary care physicians and stakeholders including patients and caregivers. Based on years of research in stroke care done by the team at Wake Forest Baptist, they crafted assessment questions that construct a recovery plan by asking questions for input into their own care—and thus the eCare Plan was born.
But they didn’t stop there, converting the plan into an easy-to-use digital app for practitioners to use on a tablet—the eCare App. The team began using the app in the stroke practice at Wake Forest Baptist in June 2015.
Case managers within Wake Forest Innovations—the division of Wake Forest Baptist that works to improve patient outcomes through collaborative innovation—have also begun working with Duncan and her team on intellectual property protection and creating inroads with industry for possible licensing.
Putting eCare in Practice
Christina Condon, a stroke nurse practitioner at Wake Forest Baptist who assists with the research, sits with a patient who was recently discharged after an acute stroke and is scheduled for a follow-up appointment.
She grabs her iPad and launches the eCare App. Initializing the assessment is easy: it contains about 50 questions and takes roughly 12 minutes to complete. The questions uncover functional, cognitive, emotional and social factors that might pose a threat to a stroke survivor’s recovery.
Looking at her patient, Condon asks, “Since your stroke, have you been able to drive yourself to and from places?”
The patient answers, “No.”
Condon looks down, checks the option “No” and hits the large “Next” button at the bottom of the screen.
A follow-up question appears, “If you were unable to drive, is there someone to take you to the doctor or pharmacy?” The questions display individually and the app indicates progress through the assessment with a blue percentage bar at the top of the screen.
The rest of the assessment follows in a similar fashion and includes questions such as:
- In the last month, were you unable to buy your medicines because of not having enough money?
- Do you stop taking your medicine if you feel better or worse?
- Can you prepare your own meals or do your own housework without any assistance?
Algorithms in the background of the application flag any areas where the patient is at risk or requires additional resources to follow the care plan.
At the end, the eCare App churns out an individualized care plan that gives Condon practical ways to address the patient’s needs, whether physical, like arranging adequate therapy services for rehabilitation recovery, or emotional, like managing post-stroke depression. Condon reviews the care plan with the patients and then can easily share the care plan with all members of the patient’s health care team such as a primary care physician, physical therapists and home health agencies.
“Having a stroke is devastating to both the patients and their families,” says Condon, “Many are frightened of what to expect when they leave that hospital door. We now have a way to holistically address stroke recovery. This tool helps me guide patients and their caregivers as they navigate their recovery, which is what makes my job meaningful.”
The Individual Impact
Although simple in design, the eCare Plan’s impact is already apparent. Last year, medical professionals at Wake Forest Baptist treated a young woman with a history of multiple strokes with unknown causes. She suffered what doctors thought was a mild stroke and was quickly discharged.
A few days later, the patient returned to the hospital. She wanted to return to work and needed permission from her doctor. A staff member used the app to take her through the new eCare Plan. As she answered the questions, it became clear that the stroke was far more severe than originally believed. She had cognitive deficits that had gone undetected because she could speak extremely well, but these deficits prevented her from being able to manage her own recovery, let alone go back to work.
This scenario is a prime example of how the eCare Plan can make a positive difference: by using it, medical professionals can catch such deficits before patients are discharged and provide the necessary resources for patients to optimize their recovery.
“We are creating the structure and the process for post-acute care in order to optimally manage stroke patients who go home. We already know our approach significantly reduces 30-day readmissions, but now we want to study whether the assessments and individualized care plans will also improve functional outcomes for stroke survivors and their caregivers,” says Bushnell.
The Institutional Impact
With changes in health care reimbursement, hospitals and insurers are pushing towards precision medicine to make medical care efficient and effective. As reimbursement becomes increasingly dependent upon patient outcomes instead of billable services, medical institutions desperately seek ways to better manage at-risk populations and prevent health issues and readmissions, all while trying to engage patients in their own care.
“If we manage patients well now and manage the challenges to their recovery, we believe that we could reduce hospital readmissions and excessive use of health care services,” Duncan says.
Which is why Duncan and her team of researchers and clinicians are about to embark on the next step. As part of the larger $14 million Patient-Centered Outcomes Research Institute grant awarded to researchers at Wake Forest Baptist, the eCare Plan and App will be tested in a randomized clinical trial of 6,000 patients in up to 50 hospitals across the state of North Carolina starting this spring.
A large team of health professionals, programmers and patients worked with Duncan to develop the application including people like Sarah Lycon, NP (left), and Cheryl Bushnell, MD (right).
Duncan wants stroke patients to hear that they can get better and can get access the support they need.
By the end of 2017, the results will be used to assess the app’s ability to improve efficiency of care and patients’ functional outcomes, as well as determine if it greatly reduces readmissions. And for health systems where improving patient outcomes has a direct effect on bottom-line results, that’s a big deal.
Because the eCare App is a platform, there’s just a short step to developing similar care plans for other chronic diseases. Duncan and her colleagues are currently developing postsurgical and care transition plans with hopes of more in the future.
The next frontier for the application will be to turn it into a product that can plug in to any electronic medical record system.
“The eCare Plan is precision medicine at its best,” Duncan says. “The plan is built to help medical professionals know their patients. If we can do that, we can do more than save lives; we can revolutionize recovery and help patients get back to living their lives to the fullest.”
A Picture of the Future
In her office, Duncan has collected many photos of her children and her grandchildren, images from trips she’s taken, a photo of her dancing with her husband—all nestled next to the tiny print of her and her mother.
She is a woman determined to live her own life to the fullest, reflected in her insistence on making a long-term impact on the health care system and in the way she allows her personal life to inspire her professional one. Now a grandmother herself, Duncan is more motivated than ever to change the health care system for the people she loves.
“If I was passionate about recovery at the time of my mother’s passing, I am more passionate today,” Duncan says. “If we are going to save people’s lives, we have a responsibility to help them recover. When people suffer from strokes, what we want them to hear is that they can get better and that they have the ability and resources to meet the challenges of recovery.”
For Duncan, three decades of work is only the beginning. Her innovative technology creates a snapshot of a more individualized and responsive health care system, a future she hopes to help realize.