Posted By Tiffany Christensen,
Wednesday, April 4, 2018
Updated: Tuesday, April 3, 2018
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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
Posted By Jason A. Wolf Ph.D. CPXP,
Tuesday, April 2, 2013
Updated: Tuesday, April 2, 2013
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In just two
weeks, hundreds of healthcare leaders, resource providers, patients and family
members from around the world will gather together at Patient Experience
Conference 2013. This annual gathering continues to amaze
me, for while I get to take part in the organization and preparation with an
incredible team of planners and volunteers, what happens during these days
together is still, in many ways, a surprise.
Why is that,
you ask? It comes down to a simple philosophy we work hard to ensure permeates
our community at The Beryl Institute each and every day. With as many resources
as we continue to provide – from papers, to case studies, On the Road visits to research – and our commitment to be the global community of practice and premier thought leader on
improving the patient experience, we fundamentally believe the greatest power
in our community is the connection and sharing with one another. That is what
makes the annual gathering of patient experience leaders so powerful; it is
grounded in the learning from and connection with one another and provides a
new level of support for what many can feel at times may be a very lonely and
person, organization, provider or vendor "owns” the patient experience and they
should not claim to; rather it is ALL of the people who live it, struggle with
it, work to improve and yes experience it every day, who do. It is you who
truly are keepers of this movement. You are the patient experience. I see our job to create the space for this to happen, provide the
information from which you can learn and fundamentally encourage the
connections that will help all of us ultimately improve.
In my March
Patient Experience Blog, Why Community
Matters in Improving Patient Experience, I suggested, "…to provide a true experience, you must
think well beyond the physical nature of your facilities or practices to
recognize that experience resides in the network of people that surround and
are connected to your organization, both near and far.” I would suggest that in the call to action to address the patient experience we remember this fundamental
point. This is what also has me encourage people to get engaged, be part of the
community, contribute and learn from one another. It is why at the Institute we
have launched our Voices of the Patient
Experience series to start this year from the perspective of
executives, the front line, healthcare students and patients and family members
and why we are ensuring patients and family members can participate in
Conference 2013 (#patientsincluded).
I also share
these thoughts with a new perspective on this passion, from that of a patient and
family member myself. Personal experience has led me to spend time (and as
someone committed to patient experience, observe the experience) in an
emergency department and primary care setting, and has blessed me with the
chance to encounter the preparation and expectation setting that happens with
both physician and hospital in anticipating the arrival of your first child.
These personal encounters have reminded me that each and every one of us
committed to this work are also (or will be) that patient or family member.
I share all
of this to reiterate my central point, if we are committed to improving patient
experience, to ensuring all voices are heard, to providing the best in quality,
safety and service, then the opportunity we have and must take advantage of is
to tackle this not alone, but as a true global community. Whether in person at
Patient Experience Conference, on a call or via an electronic network, the
impact that we can have is only heightened through our connections. I encourage
your engagement and I urge your sharing. This is an effort worth every moment
we spend. I most look forward to all that will still emerge as a surprise!
Jason A. Wolf, Ph.D.
The Beryl Institute
community of practice
improving patient experience
Patient Experience Conference
Posted By Jason A. Wolf Ph.D. CPXP,
Tuesday, April 3, 2012
Updated: Tuesday, April 3, 2012
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Last week I had the opportunity to attend a conference on Healthcare Experience Design. This is an incredibly important part of the work in providing a positive patient experience. In fact, experience design has been identified as one of the fourteen core domains in the Patient Experience Body of Knowledge (Have youprovided your input yet?). The element of design focuses on possibility, not problems. I believe we need to ensure patient experience overall has that same intention.
The well-known design firm IDEO reinforces these principles in the way they work with partner organizations. They describe this as design thinking, "a deeply human process that taps into abilities we all have but get overlooked by more conventional problem-solving practices.” This is a powerful statement in that patient experience in many ways is just that, the ability to move beyond problems to something more meaningful, and beyond standard processes, to those that have real and lasting impact. In this shift from a problem solving to a design mindset, the potential power of a positive patient experience is unleashed.
This idea was reinforced by Gary Hirshberg, President and CE-Yo of Stonyfield Farm, who talked about the potential intersection of design and business function. He shared that while some organizations manage their priorities to reduce production costs and then direct significant dollars towards promotion and advertising, there is another opportunity. If we invest in our products and services to ensure the greatest quality experience, we can change the equation. This shift in focus is from one of awareness through advertising to one of attraction and engagement through loyalty. Hirshberg reinforced that you get to loyalty by doing what is right for your consumer, not by telling them how great you are. As I listened to this argument in the consumer product world, I found myself thinking about how this applies to healthcare.
In an era where patients and family members are becoming more consumer-savvy and the system is set up to provide for greater ways to actually comparison shop in the healthcare marketplace, how has healthcare responded? Have efforts in healthcare focused on awareness through advertising and promotion or have opportunities for loyalty been created and sustained? Has a system been built based on solving the problem of driving healthcare volume or has the industry shifted to the thoughts of possibility in designing for an unparalleled experience?
It is clear in healthcare reputation carries great weight, but how that reputation is presented also has an impact. Advertisements for awards, recognitions or even wait times can only carry an organization so far. They are the perceived, not lived experience. Rather it is in designing and enacting the actual experience through which reputation is solidified and loyalty gained. This suggests the importance of investing in what it takes to ensure the best patient experience versus simply the messages to convey value. In doing so the conversation shifts from awareness which will need to reinforced again and again via the next print ad, billboard or TV spot, to that of experience that will reach well beyond the walls of a facility or practice, through the words of those that have walked your halls, engaged with your staff and had the chance to be impacted by the experience overall. Loyalty does come by doing right. This is making the right investments in your overall patient experience. In doing so you move beyond solving the problems for your organization and instead reinforce what is possible for your patients, their families and your team.
Jason A. Wolf
The Beryl Institute
Related Body of Knowledge courses: Metrics and Measurement.
body of knowledge
improving patient experience
return on service
Posted By Jason A. Wolf Ph.D. CPXP,
Tuesday, February 1, 2011
Updated: Tuesday, February 1, 2011
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En route to my most recent On the Road visit to Rush University Medical Center, I was privy to an exemplary service "moment.” My flight from Washington to Chicago should have been a simple 2-hour trip, but winter weather took hold and turned that short trip into an almost endless journey. It was a situation that for most would be stressful, frustrating and all too often one in which the customer is left "in the dark." Rather, what occurred on this trip was an incredible orchestration of service that had what could have been a plane full of angry travelers leave with an appreciation for the care and attention they received.
I emphasize the word "moment” because too often service is viewed as a single encounter at one point in time. Rather, I suggest effective service is an integrated effort and a connection of experiences over time. In healthcare, I do not think any of us would suggest the valet at our front door, the person in admissions, the nurse on rounds, or the discharge manager represents the totality of the service experience in our facility. It is the work that these individuals do in concert with one another (whether consciously or not) that shapes the perceptions of a patient’s, family’s and support network’s overall experience.
While on my flight, I thought of the core elements of service excellence often suggested including ensuring the "right people” are hired and providing them with the "right words.” Selecting for fit is often easier to say than do and takes a significant commitment and patience in the hiring process. Scripting, while also a practice that generates positive results, still faces resistance and often raises the concern of removing the passion from the healthcare process. What stood out to me on the flight was that while these service keys may have been used, they represent fundamentally individual activities. The right individual or the right words only work in one-on-one encounters, yet as suggested above, our healthcare journeys are built on countless interactions.
What I experienced on that plane was a coordinated team effort, including consistent communication on our status from the flight deck and engagement by flight attendants who went above and beyond in reassuring concerned travelers about connections, while providing comfort with either beverages or blankets. It included the actions of the gate agent (when we needed to land in an alternative airport to refuel) who greeted us, kept us informed, and provided thoughtful options for travellers with specific needs. More importantly they were communicating with each other, across roles, in addressing the specific needs of the situation. The group of individuals interacted as a team, covering all aspects of our service needs at every moment of the experience. There were plenty of individual "moments of service,” but it was the synchronized actions of the group as a whole that led to service success.
Clearly this was not a typical situation for which these specific individuals could rehearse. What they had to do was improvise, not just as individuals, but rather through a coordinated effort that helped them best address the situation at hand. Unlike the story shared during my visit to Rush of the rental car shuttle driver who recited her complete script even though there was only one individual on the bus, they adjusted what they did to the situation. In service encounters, where no two individuals or experiences are exactly the same, improvisation becomes a critical team skill.
Service delivery, especially in our healthcare environment, cannot be over-structured. We need to create a team consciousness that helps our people realize they each play a part in the service picture and that every action they take is part of the overall patient encounter. We also need to challenge them to respond in the moment to what is needed.
While understanding the parameters of what is acceptable, we need to ensure these individuals have the ability to "dance in the moment” and share the passion for care that draws so many of us to this work. As we ask our patients to both take on the wholeness of their experience, while accepting the need for flexibility along their care journey, we too must recognize that service is a team sport, requiring agility and the need to improvise in order to ensure the greatest of patient experiences. Our flight "team” did just that, turning a "moment” into a service experience to be remembered.
Jason A. Wolf, Ph.D.
The Beryl Institute
Related Body of Knowledge courses: Organizational Effectiveness.