Patient activation is a behavioral concept… It is defined as 'an individual's knowledge, skill, and confidence for managing their health and health care'.
(Hibbard et al 2005).
We know from all of the literature on patient activation that there is a way to both understand and measure a patients’ readiness to manage their health and their healthcare. We also know that there are techniques, such as motivational interviewing, that can assist in moving a patient from lower activation to a higher activation. In so doing, patients and families gain knowledge skills and confidence. As a person working in the field of patient experience, I find activation work to be both inspiring and essential in operationalizing engagement. As a patient, I have experienced activation is a moving target.
Recently, I was reacquainted with my personal activation scale when I found myself feeling puny shortly before a big trip to Thailand. I had never been to Thailand, I was meeting my best friend there and I was using all of my airline miles to have the trip of a lifetime. It goes without saying that I really wanted to go so when I began feeling sick my first thought was “Noooooo! I can’t let this stop me from going!” Like a good CF/Lung Transplant patient, I called my team and set up an appointment to be seen with the hope that I would get the “ok” from my team to go on my big trip. I arrived with my personal SBAR form all filled out, questions at the ready and feeling very high on the activation scale.
The flu swab was negative, WBC was normal, chest X-Ray looked good and I was not spiking fevers. After a great conversation with my transplant medicine doctor, we decided it would be okay to go on the trip as long as my symptoms did not get worse over the next few days. That was the news I hoped to hear!
A few days later, I was on my way to Thailand via a very long series of stops: Raleigh to JFK to Moscow to China to Thailand. Confident I had a simple virus, I boarded my first plane feeling very comfortable with traveling the long distance. By the time I got to JFK, things began to change and by the time I was ready to board the plane to Moscow, I knew I was too sick to travel. After making the tough decision to turn around and getting my flight home arranged, I began my descent into illness.
In the interest of the reader, I want to begin by saying I was fine and I am fine. Eventually, it was determined through a bronchoscopy that I did have the flu. Just the flu. Especially this season, few people seemed to be able to avoid this virus and, just by how common it is, it seems silly to say that it brought me to my knees; especially in light of my past medical history. But it did.
Fever, fatigue, coughing…the normal flu stuff. At some point in the illness process I lost my voice entirely which was far more debilitating than I would have imagined it to be. As a CF/ Lung Transplant patient, I was hyper-focused on my symptoms and my internal life was one of balancing logic (“this is just the flu”) with diligence (“you can’t let this get away from you”). I had faith in my team and hoped each day that I would feel better but, day after day, I felt worse and worse. Worry began to creep in and clouded my mind. My once clear, organized approach to dealing with this illness challenge began to slip away. My level of activation seemed to be melting away along with my sense of well-being.
It was approximately one week after my initial symptoms that I had a night of restless sleep peppered with visions of ventilators. It was as if I could feel the life draining out of my body and I thought to myself, “Oh, I can see how people die from the flu.” I couldn’t help but wonder if I was experiencing anxiety or a premonition. My canceled trip to Thailand was no longer something I gave a second thought—my goal had shifted from wanting to go on that trip to wanting to make it through this alive.
The following morning, I carried the weight of my ventilator dreams with me as I went to have a bronchoscopy. At the hospital, I felt what has become a very common dichotomy for me: my very personal (often unspoken) illness experience butting up against the day-to-day work of those caring for me.
Because of my history working in a hospital, I both recognize and respect the “why and how” of daily operations. During the years I worked as a patient advocate in an academic medical center, my days were dictated by structure. The structure of the CMS policies I was required to follow, the structure of prioritizing the calls, letters and pages I received each day and the structure of daily work flow for the clinical providers surrounding me. Checklists, protocols and routines were everywhere. Assuming the role of sick patient, however, I was reminded that the experience of being a patient is often the antithesis of a structured, day-to-day norm. In fact, showing up for healthcare is quite opposite from a “normal” day. Likewise, being activated wasn’t something I had achieved and could check off of a to-list; it was something that I had to work to maintain.
The walk from the car to the front door was difficult; I was too weak to walk without holding on to my friend. After checking in, I had to get labs, CT and go to clinic. All of these were in very different parts of the hospital and the walk to each area seemed to be miles and miles. In each waiting room, I longed to lie down but there were only hard, upright chairs. I wore a mask and, since I lost my voice, nobody could hear me or see my mouth move. Person after person seemed both surprised and shocked to discover I was unable to communicate verbally. To all of the people I presented to, my case was not remarkable nor was it dire. Objectively, they were correct. That didn’t change the fact that I was still weighed down by my night of ICU visions and getting from “A” to “B” seemed to take all of the strength I could muster. It seems strange to me now that all of those emotional twists and turns had gone largely undetected by those around me; both my medical team and my family.
After the bronchoscopy, I was given strong antibiotics and slowly began to recover. My healing was as palpable as my descent into illness. I could feel my body changing every day and, some days, I was filled with a sense of euphoria because of my improving health. The tides had shifted and my internal life was one of hope and gratitude. Increasing physical strength buoyed my ability manage my life again. My challenging internal journey was winding down and I was returning to my “activated” self. My sites were now set on going back to work and rescheduling that trip to Thailand.
If we want to "engage" patients, we must never lose sight of the fact that we are functioning in two different worlds: one that demands predictable outcomes and one that, by its own nature, can never be truly be made submissive to our will. As many times as I have lived through illness and healing, I am always amazed at how quickly I forget the reality of what it is to experience it. To try and operationalize the patient experience is like trying to contain water. It can be done, certainly, but to dishonor the unpredictable nature of illness/healing is like trying to deny the properties of water.
As we continue to hammer out ways to be better partners in the road of illness and healing, it’s natural for people on both sides of the bed to feel frustration. It’s also imperative that we keep in mind that this frustration does not result from one person being right or one person being wrong. Both are simply behaving exactly as the nature of their respective experiences dictate: the healthcare professional is functioning from logic, structure and science and the patient is immersed in the ever-changing tides of an illness/healing dynamic.
Activation levels are not a constant, no matter who the patient happens to be or how extensive their medical history. Knowledge, skills and confidence rise and fall like water lapping against the shore. If we begin all of our interactions with that awareness, we can put aside some intrinsic, (often) unconscious frustrations that derail us from partnership and effective communication. It is then we can truly meet people where they are and come together as a team.
Vice President, Experience Innovation
The Beryl Institute