Is it possible that healthcare movement such as Patient Engagement and Person- and Family-Centered Care are actually failing?
Without a doubt, these movements have generated impressive progress. I am a parent of a medically complex child who would probably not be alive if not for the success of these movements. That success has allowed my wife and me — neither of us medical professionals — to put a hand on the wheel of our son’s care and steer toward more favorable outcomes. Quite reasonably, most people who believe in these movements seem to conclude based on their progress that they are on an inexorable march toward achieving their ideals. I suggest that the possibility of failure is quite real, in that these movements may be approaching a limit well short of their ideals, and that fundamental changes in our approach will be necessary to realize the vision of engaged patients and healthcare professionals working in true collaboration.
The Gap is Larger than We’re Talking About
My son Michael was born with a severe congenital heart condition, faced one complication after another, and in the first three years of his life has endured six open-heart surgeries. Like many engaged patients (“e-patients, or in our case “e-parents”), my wife and I have always seen ourselves as the managers of our son’s care. We work with his medical team to set reasonable goals and pour energy into pursuing them, learning as we go, involving ourselves in every decision, surfacing problems we see at home or the bedside, and challenging assessments that seem flawed. Like many e-patients, we have found that no professional can match our ability to directly observe details and patterns in a case, to track history and nuanced context over time, or to dedicate large bandwidth to daily experimentation and iteration on our single case.
As Michael’s case grew increasingly complex, finding the skillsets necessary for his immediate needs took us to various hospital systems and surgical centers on both coasts of the United States, including some of the best centers in the country. Each has proclaimed their Family-Centered Care model where parents are valued members of the care team, and indeed the vast majority of the professionals who have helped us have clearly intended to work with us in achieving the best outcomes for our son. That said, trying to collaborate with the professionals over the years has been a far greater source of stress to my wife and I than his condition itself.
Our experience is that despite the progress of modern healthcare movements, at the end of the day the underlying model of classic professionalism is alive and well. Despite the best intentions of all involved, collaboration seems to fall apart when things are not straight forward. When ambiguity grows or the stakes get high, the old lines remerge and the professional’s opinion dwarfs the layperson’s perspective.
What’s so frustrating about this is that professionals, with little bandwidth to manage experimentation or track details in a single case, and even less chance for direct observation of the patient, rely largely on narratives constructed by comparing the available facts in the case with their experience across other cases. When an e-patient raises observations or wants to test ideas that don’t fit into that narrative, the tendency is to answer away the matter with conjecture. Countless times my wife and I have had our concerns dismissed only to later see them validated by results, by which time the professional has lost track of the initial debate and thus lost the opportunity to see and learn from the fact that they were wrong.
Treating patients is about applying the scientific method, and the scientific method is about learning from being wrong. Ideally, the e-patient and the professional should be applying the scientific method together, each bringing their own unique assets to the effort of improving the patient’s health, finding small, quick, safe steps to learn the path toward better health. The professional brings technical expertise and experience across populations that the e-patient cannot match. The e-patient brings proximity to detail, historical context, and bandwidth for experimentation that the professional cannot match. When the role of scientist is reserved to the professional, and when understanding is founded on the professionals’ narrative while the e-patient’s potentially useful ideas go untested, patients are neither fully engaged nor at the center of care. Thousands of hours spent interacting with hundreds of professionals in multiple health systems tells me that these failure modes remain the norm in healthcare today.
Our Current Approach Has Limited Potential
The gap between where we stand and our ideals isn’t there because healthcare professionals don’t want to collaborate, or that they don’t understand the principles of Patient Engagement or Person- and Family-Centered Care. On the contrary, my experience is that healthcare professionals are an exceptionally high-caliber group that by and large embrace the idea that patients should be engaged in their care.
I believe that the gap is there because our approach isn’t addressing the root cause: neither patients nor professionals know how to collaborate with each other in applying the scientific method. Most patients don’t come to their care equipped with the skill to think and act scientifically, they don’t share the medical language spoken by the professionals, and our culture ingrains habits around deference to expertise. Most professionals lack the coaching skill needed to grow a patient’s skill at applying the scientific method, and the healthcare culture ingrains habits around masking uncertainty and avoiding liability that undermine collaboration with non-professionals.
It may be that the current gap is due to a lack of skills, and our habits stand in the way of progress. If this is the case then this gap will not be closed by the current approach to driving Patient Engagement and Person- and Family-Centered care, which seems focused on educating people on principles & tools and telling them to go collaborate.
Training received in a classroom, or with books or webinars, can likely do little more than create awareness of a topic. New skills are generally gained through practice – through doing. Exposure to concepts, no matter how compelling, will generally have little effect on existing routines because of the incredible power of ingrained habits. Some of us may be in a position to convert such exposure into real, sustainable change in behavior – the “early adopter” model – but my experience suggests that a month after “training” most of the new concepts will be undetectable in our actions. In other words, our current approach to training will, in the end, leave most people untrained.
Establishing advisory councils so that hospitals can solicit lay opinions on various initiatives also seems unlikely to build new skills at the level of the professional-patient interaction. If anything, there may be a detrimental effect of compartmentalizing or functionalizing lay involvement in a way that keeps it away from clinical practice.
Family-Centered Rounding, where the medical team visits the patient’s bedside and invites the family into the process of forming the daily plan, has been valuable to my son’s care because it has given my wife and I a voice in care planning. This is progress. However the reality is that our presence in rounds does not yield collaboration, but rather a mutually frustrating dynamic where the professionals are forced to endure our questions and comments and we are treated to the awkward responses of professionals who don’t know what to do with our observations or ideas other than answer them away.
Generally our presence in daily rounds does little to impact the care plan, and we often end up deferring to plans that we don’t like (which many times prove in fact to be poorly conceived). Our voice ends up altering the plan only occasionally, and generally only when we feel so strongly that we choose to be forceful. This often involves pointing out weaknesses in the professionals’ assessment, or highlighting previous flawed judgments, or simply challenging their authority by saying “no.” It’s a negative situation, and a shame because everyone is trying hard and means well. One might call this co-production, but it’s not collaboration.
We don’t have the skill to collaborate. We don’t even really understand the roles and responsibilities in a collaborative dynamic. We need a breakthrough.
A New Focus on Building Capability
If skill is developed through practice, and if our experience shapes our mindset, then further progress toward our ideals requires getting people – patients and professionals – to practice new routines that will help them develop the desired skills and mindsets.
I don’t have the answer for how to do this, but I do have a proposal to test.
A few years ago in my professional life, I came across some interesting management research looking at the problem of companies that fail due to an inability to adapt and innovative. In this field the theory has emerged that a company’s long-term survival is tied to its employees’ ability to apply the scientific method to their own work, pursuing objectives aligned with the needs of the business.
One particular researcher, Mike Rother, has proposed a process for building a person’s ability to gain skill at applying the scientific method for improving their own work. This process includes a mechanism for building a manager’s skill at coaching their reports to grow their ability to think and act like scientists in the workplace. I think this process has great potential to help the Patient Engagement and Person- and Family-Centered Care movements move forward. Here’s how it works…
An employee learning to improve their work practices follows a simple model that breaks the scientific method into four steps:
- Understand the Direction:
Describe a desirable future that you will strive to achieve, and a date by which you will achieve this “challenge.”
- Grasp the Current Condition:
Analyze the current situation in detail, personally observing current patterns and characteristics, to build a deep understanding based on facts and data.
- Set a Target Condition: describe where you want to be next, a couple weeks to a couple months from now, a step toward your challenge. This takes patterns and details in the current condition and defines how they will be different, but does not define the actions or path to changing them.
- Experiment toward the Target Condition: list the obstacles that you feel are preventing you from reaching the target condition. Pick one obstacle, plan a step that you think will help you resolve that obstacle, as well as what you expect from taking the step. Then take that step, compare what happened to what you expected.
The person practicing this model, referred to as “the Learner,” practices every day for an hour or so – just like practice for a sport or musical instrument.
Here’s the thing: most people who start practicing this model will screw it up almost immediately, and without practicing the steps correctly they will not gain skill. Concepts on their own are not enough. Thus the process includes daily interaction with the employee’s manager, “the Coach,” who understands the scientific method and can help the Learner correct flaws in their practice. Each day includes a “coaching cycle” where the Learner explains their planned next step to the Coach, and the coach asks probing questions and gives corrective feedback to make sure that the Learner is experimenting at the threshold where their knowledge gives way to ignorance.
The Coach’s purpose is not to make sure that the Leaner takes “the right” step, or the step that they themselves would take, but rather to help the Learner gain skill at thinking and acting scientifically – testing ideas supported by facts & data, never using narrative or conjecture to plan beyond their threshold of knowledge. The Coach is responsible to make sure that the Learner’s steps are “safe,” in that they aren’t likely to displease the customer or hurt the business, but it is understood that the Learner needs to experience “small failures” where they must face and adapt to having their expectations refuted by reality.
These coaching cycles involve the Coach asking the Learner a structured set of questions to probe their thinking, helping the Coach find flaws in the Learner’s application of the scientific method:
- What is the Target Condition?
- What is the Actual Condition now?
- What did you plan as your last step?
- What did you expect to happen?
- What actually happened?
- What did you learn?
- What Obstacles do you think are preventing you from reaching the Target Condition?
- Which one are you addressing now?
- What is your Next Step?
- What do you expect?
- How quickly can we go and see what we Have Learned from taking that step?
By using this structured coaching pattern with periodic feedback from their own boss, the managers themselves builds coaching skill through practice over time.
I experienced this process in my professional life, practicing both the Improvement and Coaching routines every day for months under the guidance of a skilled mentor. Though occurring entirely outside of healthcare, this experience equipped me with new capabilities to think and act in ways that made me better able to manage my son’s care.
My proposal is that a capability-building process such as this, perhaps even this very process adapted for healthcare, offers a promising path forward. It’s unclear what this would look like. Clearly patients and families could practice in the Learner role, but who would be their Coach? Do we expect physicians to teach the scientific method to patients, or would we get better results by tapping support staff like Social Workers or Health Coaches to act as Coaches? Many answers would need to be found through pilot work, but I suspect that a process such as this could address many of the failure modes we currently see.
Whatever the path forward, I suggest that there exists a need to acknowledge that we remain very far from the ideals of the E-Patient and Person- and Family-Centered Care movements, and that the current approach to driving these movements may be generating broad acceptance but is failing to equip patient and professional populations with the skills and habits that they need. I suggest that these skills and habits can be learned by doing, and that the next step in these movements is to develop processes that build the capability of patients and professionals to collaborate.
-Tyson Ortiz, Global Lean Champion at Abiomed,
Guest Editor, July Newsletter
