Abstract

Keywords: Patient engagement, children, hypoplastic left heart syndrome, HLHS person-centered care, family-centered care.
Citation: Ortiz T, Liker J. Patient engagement: a skill cultivated through deliberate practice? how the evolution of lean may reveal a new frontier in person- and family-centered care. J Participat Med. 2016 July 17; 8:e10.
Published: July 17, 2016.
Competing Interests: The authors have declared that no competing interests exist.

“In every encounter, health and human service professionals will seek to build on the strengths of patients and families, enhancing their confidence and competence. The health care delivery system will recognize and encourage patient and family strengths, choice, and independence.”
–Vision of the Institute for Patient- and Family-Centered Care

A shocking medical diagnosis doesn’t really come with a playbook for how to face it. A few summers ago, my wife Sarah and I learned that our son would be born with a heart defect so severe that roughly half of children affected by it don’t live to see kindergarten. [1] The condition is called hypoplastic left heart syndrome (HLHS), in our child’s case characterized by the complete absence of the left-side chambers of his heart. We were told that in the best case, he would need three open-heart surgeries in the first few years of life to allow him to survive with his single-ventricle heart. Sarah and I spent weeks in surreal disbelief, with no idea how we would face our future.

Fortunately, this discovery came as I was making a career transition to begin practicing Lean. Specifically, my work would involve exploring a recently developed approach, “Toyota Kata,” aimed at developing leaders with the skill of applying the scientific method to improve work processes to meet fundamental business challenges.

Figure 1. A life-changing image.

Sarah and I quickly concluded that we could not count on the health care system to provide the best possible care for our son and we needed to be proactive to give him the best chance of a quality life. As I learned about Toyota Kata I naturally began using the scientific method as Sarah and I engaged in the daunting effort of managing our child’s care.

Today our son, Michael, is getting ready to turn 3 years old. Despite a rough road and major ongoing challenges, he’s happy, active, and very smart – an absolute treasure for our family. Across five open-heart surgeries and over a dozen procedures totaling several months spent inpatient, with daily effort Sarah and I have sought to actively manage his care. Our effort has indeed produced superior outcomes, but the details of our experience suggest the existence of a promising uncharted frontier in the broader effort to realize the dream of Person- and Family-Centered Care.

Evolution of Lean from Tools to Mindset

The field of Lean has evolved significantly in recent years, and many organizations are changing the way they think about Lean. Historically a company’s Lean initiative has been the purview of improvement experts, traveling about the company leading projects to fix struggling processes. After more than two decades of Lean initiatives in the manufacturing industry, the results have been somewhat underwhelming. [2] Typically a company’s Lean initiative generates impressive initial gains, but with time then the improvements fade away and the organization does not gain a long-term competitive advantage.

Many thought-leaders have concluded that the problem is the underlying assumption that lean is a toolkit wielded by experts to eliminate waste. [3][4][5] The original concept of Lean Thinking by Womack and Jones [6] was to fundamentally change the way management approached the business. In Toyota is it the management hierarchy that is responsible for improvement, with a small number of experts traveling about to coach leaders at all levels. [4]

Toyota Kata begins with this assumption and further asks: What are the practice routines that will help managers outside Toyota develop the necessary skills and mindset to lead fundamental change in their organizations? The core mindset is well captured in the scientific method often associated with Dr. Edwards Deming—the Plan-Do-Check-Action (PDCA) cycle. In this model, the plan starts with an understanding of the gap between where we are and where we want to be, ideas for getting us closer to our vision are like scientific hypotheses which must be tested (Do), and through Checking what happened we have an opportunity to learn and define further Action.

At the heart of PDCA is the belief that when we approach a challenge there are many things we do not know that can only be learned through experimentation in the workplace, or in lean terms, at the Gemba. Unfortunately, much of our education and experience has pushed us to assume we know the right problems to solve and their solutions. Or we seek solutions through imitating so-called best practice models like Toyota. Much of what we see at Toyota are current countermeasures to problems that make sense in Toyota’s environment, but may not help us meet our challenges. What is often thought of as lean tools, such as pull systems, are actually desired future conditions, such as responding faster and better to customer pull. Unless we truly know how to do this we must learn by experimenting (see sidebar below).

Through our example of meeting the challenge of helping our son have a quality life we hope to make it clearer. The pattern of thinking itself is actually straightforward as illustrated in the Improvement Kata figure. We need to start with a clear direction defined by a challenge that is important to our organization. We then grasp the current condition so we can clearly understand our starting point. If it is a real challenge it is beyond our current knowledge threshold so we need to define shorter-term target conditions we can seek to achieve on the way to meeting the challenge. We then work to achieve these target conditions iteratively, through many PDCA experiments. In other words we learn our way to the desired future.

Figure 2. The Improvement Kata provides practice routines to develop scientific thinking. Source: Mike Rother

Similarly the Improvement Kata is a routine to practice, a means to an end, not a tool to be mastered in itself. And although the learner practicing the Improvement Kata is focused on pursuing a challenging objective, reaching that objective is actually not the endpoint of the kata either! It is the beginning. Progress toward the objective is an expected outcome, but a coach is present to modify the practice as necessary in pursuit of the true purpose: helping the learner grow a mindset that enables them to comfortably and competently face increasingly difficult challenges.

Shifting the Center of Our Son’s Care

I was fortunate to practice the Improvement Kata at work under the expert guidance of a caring manager who already possessed a scientific mindset and was laser-focused on developing the same in me. Despite the fact that I brought to the table a very typical mindset, oriented around black-and-white answers and avoidance of uncertainty, in fairly short order I was able to develop new skills that I could bring home. As the “process owners” of Michael’s care, Sarah is both the primary caregiver and technical expert on his condition, and I have been a secondary caregiver and consultant guiding our effort. I did not try to teach her the kata, or even follow it exactly as designed. But we did follow the fundamental concepts.

Thus, using the spirit of the Improvement Kata, Sarah and I have taken upon ourselves the responsibility to set objectives for Michael’s care and exert daily effort to iteratively uncover the path toward those objectives. Working in close consultation with the medical team, we have tried to learn from them to gain the technical expertise we lack rather than relying on them to drive his care themselves. Aside from a coping benefit derived from gaining a sense of control in a largely uncontrollable situation, we have repeatedly been able to generate superior outcomes.

For example, one of the major challenges in Michael’s life has been persistent feeding intolerance, hindering his weight gain despite starting life with a feeding tube. His weight gain first stalled around three months of age, with an open-heart surgery planned just three months out, and the medical team recommended various standard protocols including a dangerous medication and a drastic surgery. After extensive discussion we found that these solutions were based on questionable assumptions. We slowed down the medical staff jumping to these conclusions, and collaborated with them to experiment with alternative approaches. Through daily effort and teamwork we were able to iteratively modify Michael’s feeding regimen to safely test suspected factors behind the intolerance. In this way we discovered ways to help him gain weight and he did well in his second surgery, recovering quickly despite the fact that the surgery occurred a full month earlier than planned.

When his weight gain stalled again about a year later, the medical team recommended surgery to transition from the nasogastric tube originally implanted to a more permanent gastronomy tube. However, again we felt that the underlying assumptions were unsound, and rather than cement his tube dependency we discussed the possibility of first pursuing a transition to oral feeding. Although the team agreed that this was the ideal outcome they expressed doubt that it could happen. With the Improvement Kata mindset driving us we persisted and they somewhat grudgingly agreed to let us try. After several challenging weeks of Sarah’s intense daily effort, including trial of countless small changes that seemed to hold potential, Michael was tube-free and gaining weight with oral feeding at a rate at least double the best he’d ever gained with tube feeding. As an unexpected benefit, this effort also saw Michael enter a developmental explosion in which he quickly grew from a somewhat immobile baby to a walking, talking, trouble-making toddler.

The intimacy of working so closely with Michael in managing his care has also created a situational awareness that often exceeds that of his clinicians. His second surgery occurred a month earlier than planned because of various qualitative and quantitative shifts we noticed at home, largely invisible to his cardiologist despite weekly clinic visits. A year later, we began noticing concerning changes and asking the team for help understanding them. After several weeks of our insisting there was a problem, finally an anomaly was discovered – and largely written-off. We continued to see degradation that worried us – but with which the medical team was fairly unimpressed – so we continued to push for deeper understanding. Finally, four months after we began noticing changes, a potentially serious and unexpected complication was discovered that explained our observations.

In response the medical team put forth a surgical plan, however by that time we had developed a fairly sophisticated mental model of Michael’s physiology and an understanding of his condition that led us to question the recommendation. We felt that the proposed surgery was likely to fail, and even if successful carried unacceptable risk down the road. Reaching out to two of the top surgical centers in the country for second opinions, our suspicions were supported and one of the centers offered a surgical plan that seemed to offer more promise.

Our health plan flatly refused to refer us for the preferred treatment, as it was offered by an uncontracted center on the opposite side of the country. Any other path that we could see to obtain this treatment required accepting serious unwanted consequences. Still, Sarah and I were committed to finding a way to get Michael this care. Inspired by our previous successes in scientifically approaching challenges, I spent the next month urgently exploring possibilities and avoiding the urge to give up and settle for an inferior plan. Literally one day before our cross-country flight a key discovery was made that revealed a hidden path, enabling us to get Michael the preferred treatment while avoiding all of the unwanted consequences that would have been necessary if we had simply formed a plan with what was known up-front. That surgery turned him around.

It will come as no surprise to many that engaged parents achieved superior outcomes for their child. This is a well-studied theme and a goal of the broadly accepted Person- and Family-Centered Care movement, which enabled our effort by giving us a place on Michael’s care team and mandating that the professionals let us define his care objectives. It could be said that Person- and Family-Centered Care has shifted the center of health care from the physician to the consumer in much the same way that the evolution of Lean inspired Sarah and I to shift the center of improvement for Michael’s health from the physicians toward ourselves, the process owners. Yet we have discovered an important distinction.

Person- and Family-Centered Care refocuses health care on the needs of the consumer, but it implicitly leaves the professionals responsible for the problem-solving effort that drives the plan of care. Toyota Kata explicitly puts the process owner in the role of scientific problem solver, acknowledging that they initially lack the ability to be successful and seeking to cultivate the requisite skills and mindset. Although every health care facility we encountered was Family-Centered, and despite the fact that every professional we worked with had only the best intentions, our effort to challenge assumptions and assume some problem-solving responsibility generated a great deal of friction with the medical team. Frequently our relationship with the medical team was far more stressful than Michael’s condition itself.

Initially Sarah and I were quite surprised by encountering friction as we tried to actively manage Michael’s care, but over the past three years this has become quite familiar and even predictable. It seems that as a society we have delegated responsibility for improving our health almost entirely to the health care system, and consumers and professionals alike have formed norms around this arrangement. A consumer attempting to assume some of the physician’s problem-solving responsibility inherently violates long-standing norms, committing a form of trespassing that naturally generates friction.

Health Care as Traditional Expert-Based Improvement

Over the course of Michael’s care a very strong analogy has emerged between the approach that physicians use to improve a patient’s health and the approach that traditional Lean experts use to improve a struggling process. In each case the process owner is expected to carry out the judgment of the experts. One episode last year drove this home.

Michael’s feeding tolerance again worsened to the point that he was losing weight. By this time Sarah and I had moved our family across the country to transfer Michael’s care to the center that turned him around, perhaps the top pediatric cardiac center in the country. Facing this latest round of weight gain trouble, we admitted him to the hospital with the goal of working with his terrific new team to finally understand and address this persistent problem. Finding ourselves without the technical knowledge to drive diagnosis of what we learned was an exceptionally complex case, we largely relied on the physicians for ideas on next steps.

Although we attempted to provide low-level details on Michael’s patterns to support investigative steps, we were disappointed to find that, as in the past at other centers, the recommendations were largely just pre-existing protocols based on high-level assessments with no specific thinking as to why they should work for Michael. Rather than taking small steps tailored to explore our ignorance and build understanding of Michael’s condition, the team’s canned recommendations simply stabbed at results. This is a hallmark of traditional Lean, where experts lack intimacy with the process and the bandwidth needed for iteration, and are thus forced to conduct brief assessments and choose from a toolbox of preexisting solutions.

Day after day in the hospital, we saw the failure modes of expert-based improvement. In daily rounds more often than not we needed to correct inaccurate or missing information confidently read by a resident from a computerized report. Countless times we corrected the declarative, but incorrect answer that a resident or fellow gave their attending physician in an effort to demonstrate their command of the situation. Physicians that barely knew Michael skimmed reports on a computer screen and discussed the case amongst themselves in their workrooms, often forming errant conclusions and making poor decisions that fell apart when confronted with details that Sarah and I provided. Many days involved no significant effort to move toward our objectives as the team focused their attention on more pressing cases.

As the months passed Michael was increasingly medicalized, his diet of real food by mouth replaced by medical formula fed through directly into his stomach, and then directly into his small intestine, and then for a time he was given no food at all but received nutrition directly into his bloodstream. These solutions created at least as many new problems as improvement generated, and very little understanding was gained. As the stay lengthened Sarah and I continued to see our predictions realized and our competence reinforced, so we began to be more assertive in choosing next steps and eventually some important doors opened. I decided to begin working with the medical team to shift their management approach to better support our problem solving effort.

Team members reacted positively as I described to them the principles behind the Improvement Kata, with general agreement that such a shift would be good – although physicians were notably less enthusiastic than team members not possessing an MD. Yet nothing changed in practice. I began asking for specific changes in the team’s routines, pointing to particular instances where the existing routines had clearly been problematic. The changes were acknowledged as reasonable, but the problems were largely written-off as someone’s mistake or a one-off occurrence, and again nothing changed in practice. I continued to try to shift Michael’s care in the desired direction, with no progress and eventually some resistance as a key physician on Michael’s team finally suggested that our approach wouldn’t work because kids die when parents think they know better.

Michael was finally discharged after almost five months inpatient, with a few relatively simple solutions finally enabling him to go home. One month into the stay Sarah and I had put forth a theory on the physiological cause for the increased feeding intolerance, and this theory had been uniformly dismissed by the team. By the time Michael was discharged this had become the operating theory, and we are left to wonder how much shorter and safer Michael’s stay would have been if Sarah and I had managed to drive Michael’s treatment from admission in cohesive collaboration with his team.

In a sense Toyota Kata reverses earlier approaches to Lean, a field that contains countless books, articles, and courses describing what Lean thinking is or what a Lean process looks like. Such resources implicitly leave an organization implementing Lean to figure out how to achieve and sustain these objectives, and history is demonstrating that existing organizational cultures are largely in conflict with those principles and concepts. Instead Toyota Kata focuses on how to begin developing the desired culture, offering specific practice routines to help an organization start deliberately cultivating within employees the skills and mindset needed to sustainably pursue the traditional objectives of Lean — or any other objective for that matter.

Thus in hindsight it seems quite foolish to have thought that Michael’s medical team’s mindset could be shifted through discussion and rationale. Toyota Kata predicts that such an approach will fail. The neural pathways driving clinicians’ daily routines, built through years of daily repetition, are far too powerful to rewire without deliberate practice of a more desirable routine that was missing in my effort. Indeed my approach suggests that my own improvement skills had atrophied, with old habits resurfacing after I left the structure of deliberate practice and expert coaching that I had enjoyed with my former employer. In any case it became clear that, just as existing organizational cultures are inconsistent with Lean, the existing health care culture is inconsistent with consumers driving their care.

Patient Engagement as a Practiced Skill

In three-plus years’ experience trying to help Michael beat the odds it has become clear that Sarah and I are in the best position to manage his care, and that our lack of technical expertise is merely a gap to be closed and not a reason to step back. Although the Person- and Family-Centered Care movement opened the door to Sarah and I managing Michael’s care, we have found that the health care system still equips medical professionals with habits that are in conflict with our effort, and that discussion and concurrence is insufficient to drive change. We have found that our level of engagement and capability to tackle challenges grows with each accomplishment, but that these skills can atrophy in the absence of deliberate practice of the scientific method with coaching to correct weak points.

We have seen that the very same failure modes inherent in traditional process improvement in the business world are also found in medicine’s current approach to health improvement, and that practice-based methodologies developed in response to those failure modes can also serve to operationalize patient engagement by guiding a consumer’s efforts to improve a loved one’s health.

Our story is less about answers than questions: Is there broader potential here? How could our approach benefit other health care consumers? How can patient safety be ensured as consumers without medical backgrounds begin to take control? How can professionals begin to grow capability in others instead of just giving answers? The Improvement Kata is a starter routine developed for business – what routines are needed in health care? Where does coaching come from? What is the practice structure?

Toyota Kata says that rather than try to answer these questions we should take a step and see what happens. The first step in the Improvement Kata is to understand the direction, so we propose the following vision for a truly person- and family-centered health care system:

Experience suggests that discussion and education, tools and principles, are insufficient to drive sustainable change in this direction, so it seems that the approach to pursuing this vision should start with pilot work to find specific routines that with structured practiced and coaching produce more engaged and capable consumers. When Michael was diagnosed with HLHS no one gave us a playbook, but we found one in the Improvement Kata. Our unique set of circumstances enabled us to leverage this good fortune in a way not available to most other consumers. Perhaps someday structured practice and skilled coaching will be the norm for engaging health care’s consumers, helping them grow in their responsibility to drive themselves and their loved ones toward better health.

References

1. Feinstein JA et al. Hypoplastic left heart syndrome: current considerations and expectations. JACC, 2012 Jan 3: 59(5), 544 doi:10.1016/j.jacc.2011.09.022 ↩
1. Liker J, Rother M. Why Lean Programs Fail. Lean Enterprise Institute. Available at: http://www.lean.org/Search/Documents/352.pdf. Accessed April 13, 2016. ↩
2. Ballé M, Ballé F. The Lean Manager: A Novel of Lean Transformation. Cambridge, MA: Lean Enterprise Institute; 2009. ↩
3. Liker, J. & Convis, G. The Toyota Way to Lean Leadership: Achieving and Sustaining Excellence through Leadership Development. New York: McGraw-Hill; 2011. ↩
4. Rother M. Toyota Kata: Managing People for Improvement, Adaptiveness, and Superior Results. New York: McGraw-Hill; 2009.
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5. Womack, JP, Jones, DT. Lean Thinking: Banish Waste and Create Wealth in Your Corporation. New York: Productivity Press; 1996. ↩

Copyright: © 2016 Tyson Ortiz and Jeff Liker. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

 

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