EaaM (Experience as a Medicine)
Originally Published on LinkedIn 6/10/2021
I know this is the first sentence, but I need a favor.
Could you please think about two contrasting moments when you or someone you care for were “in the system.” Perhaps you were seeking care, seeing a doctor, getting a diagnosis, starting a treatment plan, and/or filling a prescription?
Moment #1 was bad but not what you had hoped for.
Moment #2 was wonderful and beyond your expectations.
My guess is that it wasn’t hard to think of two divergent moments. In her 1978 book Illness as a Metaphor, Susan Sontag opened by reminding us, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
As a tourist or resident in “the system” our experiences are marked by the events that make the already difficult situations easier or exponentially harder.
Part two of my favor is to ask yourself these four questions, which are derived from Forrester’s 2018 CX INDEX® where customer experience (CX) quality is measured by determining Effectiveness, Ease, and Emotion. I have added Expected, because I believe the experience equation is, “what was expected +/- what actually happens = your experience.”
1. Was it Easy. to get an appointment, find the office, understand the physician or get your prescription?
2. Was it what you Expected in terms of the vision you had for how things would go?
3. Was it (Clinically) Effective in that the treatment recommendations work to manage, alleviate or eliminate your situation?
4. Finally, while things do and do not go as planned (or hoped for), do you recall the process and people being Empathetic? How did the experience make you feel? Did people listen, genuinely care, and treat you in a manner that gave you comfort?
The experience equation:“what was expected +/- what actually happens = your experience”
In either case, the good or the bad trip through “the system”, The Four Es: Ease, Expectations, Effectiveness, and Empathy all impacted your Experience. So, we have to ask ourselves, “Is Experience a factor in our outcomes?”
EaaM (Experience as a Medicine)
We have compounding evidence that better experiences lead to better participation, relationships, trust, adherence, and outcomes. A 2012 “systematic review of evidence on the links between patient experience and clinical safety and effectiveness,” published in the British Journal of Medicine identified 5323 papers whose abstracts were then reviewed and in relevant cases, the full articles were retrieved to evaluate if they met the research criteria. In simple terms, the research is comprehensive and includes multiple disease states. This is one of many similar studies.
The same is true for the practitioners. It is the reason behind the Healthcare Professional Experiences being a part of Quadruple Aim, along with Patient Experiences.
This all leads us to consider why those involved in giving and supporting care don’t pay greater attention to the experience?
one simple rule, "expect of yourself what you expect for yourself."
It isn’t soft science, it is highly measurable, and it may be one of the easiest things to improve upon with one simple rule: expect of yourself what you expect for yourself. You may not always think things will be Easy, Effective, as you Expected, and Empathetic, but positive direction on any of them can make up for areas that negatively impact the experience.
Reconciling the Vocal Minority with the Silent Majority
Experiences do not begin or end with a single engagement or customer. Creating a network effect of improvement requires an always on mindset to hone your skill set and bulk up your organizational musculature.
We have all been the arbiter and recipient of feedback in our healthcare experiences. Sometimes it is direct, sometimes indirect, sometimes wanted, sometimes not, but often — it is needed. Getting feedback is not the end. It may well be a fresh start or perspective.
"asking people is not enough. There is bias to be found in the creation and interpretation of questions asked and balance in layering observational data into the solicited kind. By doing this we are reconciling the Vocal Minority with the Silent Majority."
And at the same time, asking people is not enough. There is bias to be found in the creation and interpretation of questions asked - - and balance in layering observational data into the solicited kind. By doing this we are reconciling the Vocal Minority with the Silent Majority.
Figuring out how all of this data is connected is key to turning it into action.. Letting people know they were heard and what you are planning to do — and doing it makes all the difference.
There is magic to be had in involving your customer. Not through a mirror, focus group, or A/B test — but really involving them in the solution. If you are worried about them asking for faster horses — don’t. Give those who are current citizens of the Kingdom of the sick the opportunity to share the view from the inside.
Then,
“Once in a while you get shown the light in the strangest of places if you look at it right.”
— Grateful Dead / Scarlet Begonias
Responding to feedback you gather changes the dynamic between you and customers, be they patients or professionals. We become more accepting of deficits in the four Es when there is rapid and considered responsiveness.
The SUM (Someone Understands Me) of the Parts
In Dr. David Fajgenbaum’s recount of his battle with Castleman Disease, Chasing My Cure, A Doctor’s Race to Turn Hope into Action (which is a Must Read) he shares his reflections on inclusive approaches to patient care, research, and collegial collaboration at all levels, “Medicine suffered when it was only the sum of its most technical and esoteric knowledge. It thrived when it was a team effort.”
Experiences in health intersect, disperse, overlap, and run on converging tracks. The team? Well, it is massive, fluid, and often disconnected, but when centered on the betterment of experiences of the patient, the pieces connect better because they have a common goal. Thriving also demands a cognizance of the care team’s clinical, logistical, and personal needs. The patient is a team member, sometimes active, sometimes passive, sometimes metaphorically, but always the lens to look through.
The precious gift of someone understanding you, acknowledging that ‘this is going to be hard’, but I am here to help you — can be a critical factor in what does or does not happen next.
“Have You Ever Been Experienced? Well, I Have.”
- Jimi Hendrix
When it is you, not some imagined or distant person labeled a patient, things become extremely loud and incredibly close. Your lack of experience in a condition or its care does not always mean you know less and therefore matter less in this equation. When it is in you — the perspective shifts from the important to the urgent. When we leave the exam room, the website, the phone call, the pharmacy, or the tele-visit, we go home with a disease inside us. We go everywhere with our disease inside us. But it is not us.
I will skirt the edges of HIPAA and share a brief story of someone very close to me who has just concluded two surgeries and a round of radiation for a rare cancer. It is hard to imagine the experiences in this scenario being wonderful at any juncture. However, something wonderful did happen and we are hopeful it made a difference. Through insurance, endowments, and the wisdom of a patient advocate, they were able to stay in a beautiful hotel just a few minutes walk from the hospital and with incredible access and views of the city. In contrast, other patients on similar courses of care were making long drives a few times each week, parking, and returning home tired.
I asked if this opportunity may have some impact on outcomes and the answer was a simple, “without a doubt. It made all the difference in the world in my physical and emotional state.”
In your personal reflection above, I am hopeful you too found some additive value in an experience well-crafted and delivered.
The Experience Era in Life Sciences
“It’s going to seem backwards and even barbaric that our solution to everything was just giving out pills,” Vijay Pande, Andreesen Horowitz, 2017
We have believed things that netted out to be untrue; shark cartilage as a cancer cure because it was posited that sharks do not get cancer (they do), that fen Phen was safe (it wasn’t), and that Opioid addiction is a weakness on the patient’s part (it isn’t). Each of these are backward, even barbaric — — and very recent.
For Life Sciences companies, there is a vast valley of complexity in the events and entities between you and the ultimate customer. As the maker of the molecule, provider of evidence, services, and support — the intent is magnificently patient-centric.
And, while the Clinical aspects of the medication are in our control to an extent, the Logistical, Personal, and Behavioral remain wild, unchecked, and influential.
In the absence of formal, continuous, analyzed and actioned mechanisms of feedback on the unfolding experiences, there is limited understanding of how these factors impact outcomes. They are often outside your current jurisdiction, but they are knowable and therefore addressable.
These nonclinical factors and the experiences that surround them may also encourage loyalty or result in detraction. We will not find insights into these in operational data or traditional and episodic market research. That would be backwards.
The reasons and sentiments driving whether someone is an advocate, adversary, or apathetic are the SUM of the experiences. These carry tremendous power in your ability to repeat the good and resolve the bad.
The reasons and sentiments driving whether someone is an advocate, adversary, or apathetic are the SUM of the experiences. These carry tremendous power in your ability to repeat the good and resolve the bad.
The manners in which we measure today — mapping the operational to the financial misses the connective tissue between the two — the experiential.
When it is wonderful, it is never just a pill, or injection, or infusion, or any other delivery of a medication. When it is wonderful we are heard, our paths simplified, and we are treated with dignity and care — and that is just good medicine.
Fluid Concept and Creative Analogies
In 1995, “Fluid Concept and Creative Analogies” was published. I have never read it. I do not know if what follows the cover is significant or not. What I do know is significant about the book is that it was the first one ever sold on Amazon. Someone decided to create a better experience for buying books online and someone decided to buy the first one. We all know what happened next.
I share this in closing as it provokes two of the many possible questions to ask next:
One, what if we spend time and money and energy to focus on customer experience as a core aspect of the medicines we make and we were wrong?
and
Two, what if we don’t and we were right?
