Scott Abel is an internationally recognized intelligent content strategist and cognitive computing evangelist who specializes in helping organizations deliver the right content to the right audience, anywhere, anytime, on any device. Scott works with organizations to plan exceptional customer experiences, and to align these with their business goals.
In November 2017, Scott was diagnosed with CNS Lymphoma. In this interview, Scott shares his thoughts on how fragmented content experiences in the healthcare industry can have negative impacts on patient care.
[VG]: Thank you so much Scott, for taking out time of your day to participate in this discussion. It was hard to believe when I first read the news of you undergoing treatment for cancer. So, first things first — how are you responding to the treatment and how is the overall picture of your health at present?
[SA]: Vinish, thanks for inviting me to share my experiences with your audience. And, thanks for asking about my health. First, I’m doing well. I’ve had brain surgery this past November to remove the brain tumor and then I completed 8 rounds of chemotherapy to kill off any cancer cells that might have escaped into my bloodstream.
According to my healthcare team, there is no longer any evidence of a brain tumor (surgery took care of that) and my blood tests indicate that my body is healing as well as expected. My prognosis is good. I’ll be monitored (blood work and MRIs) over the next few years to spot anything abnormal. I’m not wrangling at one hundred percent just yet, but I’m getting there. One step at a time.
[VG]: While you were undergoing treatment the Content Wrangler inside you must have noticed some gaps and flaws in your interactions and experiences with the healthcare system — for diagnostics, the medicines, reimbursements, and for the subsequent treatment visits. Can you share a couple of high impact instances that left you wondering, or stuck, or even annoyed?
[SA]: Your intuition is correct. I did notice some gaps and room for improvement. Being a patient in the hospital can be a scary and confusing experience. Many patients don’t understand the implications of their condition, the medical jargon used by healthcare teams, how they will pay for care, and the impact of their treatment on their lives, families, friends, and work. They are often terrified and riddled with anxiety. Fear is exacerbated by uncertainty. The content provided to patients by healthcare providers is oftentimes over-focused on a business purpose (limiting liability, complying with regulations, avoiding unnecessary and potentially expensive risks). Even in hospitals that declare that they practice patient-focused medicine, patients are unlikely to be provided patient-focused information.
The first thing I noticed was there was a lack of focus on the patient journey (the customer journey). Actually, there was little to no focus on the patient where content was concerned, although to be fair, some parts of healthcare organizations do make the extra effort to focus on the patient. But, there’s no concerted effort. No unified content strategy. More often than not, written content may be inconsistent from provider to provider. One hospital visit might involve interacting with individual doctors and nurses (before, during, and after the hospital visit), as well as specialists, laboratories, dieticians, transportation companies, pharmacies, insurance companies, government agencies, medical device companies, etc.)
It’s a big content hairball orchestrated poorly by well-intentioned professionals that fails to improve the patient experience. Poorly designed and delivered content can impair a patient’s ability to understand their predicament, create unnecessary anxiety, and potentially, damage a patient’s health.
As a patient who understands the content world, I was shocked by the lack of thought that went into the design of things like signage, forms, letters, invoices, notifications, questionnaires, and instructions.
Signs and notices posted to inform patients should be designed with patients in mind, but seldom did I find that to be the case. Where a patient is on the patient journey should drive what type of information is provided, in what format, and how much. Tone of voice should be appropriate for the situation.
Check this one out from the folks at Sage Products, the manufacturers of
Traptex, a device that can be installed in toilets to prevent wipes from being flushed and causing major plumbing problems.
This sign was posted directly above the toilet in the bathroom in my hospital room. Apparently, someone thought patients (and their visitors) who use the bathroom should know that they are not allowed to flush ‘wipes’ down the toilet. That seems to be a good idea, especially if it helps prevents pipes from clogging and toilets from overflowing. But, the sign seems to want to be more than just a “Don’t-even-think-about-flushing-wipes-down-this-toilet” warning. It also serves as a after-the-fact caution to those who flush wipes down the toilet, but don’t realize that they shouldn’t have until after they did: Don’t stick your hand in the toilet because there’s a likelihood you’ll lose a finger.
But the sign doesn’t stop there. It also attempts to serve an additional audience; the hospital staff, who the manufacturer assumes will know where to find — and how to use — Traptext wipe retrievers. Not one staff member I asked during my eight weeks in treatment had ever seen (and therefore, never used) a Traptext remover, nor, they said, did they know where to find one.
Clearly, healthcare organizations can suffer from the same content challenges we find in large enterprises. Silos, history, politics, culture, technology, fear of change, and regulations make it difficult to introduce the type of innovative information management practices needed to modernize complex healthcare systems.
As far as I can tell, many healthcare service providers don’t appear to have information architects, content strategists, content engineers, terminologists, technical communicators, information visualization professionals, accessibility, usability, and localization experts on their staffs — but they should. They also don’t appear to base their communication decisions on neuroscience. By leveraging neuroscience, healthcare and insurance organizations could create patient-focused content designed to have a better chance of being noticed, understood, remembered, or acted upon.
After having a tumor the size of a plum removed from my brain and after a fourth round of chemotherapy, remembering some things became challenging. I could remember things that were stored in a place in my brain where people, places, products, experiences, skills, and the words to all of my favorite songs are warehoused. But, my brain was not as good at juggling multiple conversations and my ability to simultaneously process detailed information from multiple sources was challenging. Details about my disease, treatment, insurance, etc. were apparently ranked with a lower priority in my brain data repository.
Immediately after having surgery to remove a brain cancer tumor, I was instructed to undergo chemotherapy treatment.
I asked the doctor if the hospital could print a narrative report that I could use to understand everything that happened to me, when, where, how, and why from the moment of diagnosis to the day of the surgery. I was shocked when the doctor said there was no easy way for them to create that content for me.
Instead, she told me aloud what had happened and (I guess) thought I would remember the specifics.
I had just had brain surgery and was on my fourth round of chemotherapy. Both brain surgery and cancer treatment can make remembering things challenging. Content professionals can provide huge value to healthcare and insurance organizations and are perfectly suited to notice these and other types of content challenges — and to get busy fixing them.
[VG]: I see, and I am not surprised to know it. Are there types of information that you were NOT been able to find and you feel it would be useful to you or to the people around you?
[SA]: Aside from the detailed narrative I asked for after surgery, most of the information I needed was available to me. It’s the delivery that failed miserably.
I expected — especially in the brain cancer department — for there to be content created with neuroscience in mind. I expected that the information they provided to me would be designed and delivered based on neuroscience. After all, who better to understand how the brain processes information that neuroscience experts who study how the brain works?
But, that was not my reality. The content provided to me as a patient was almost always centered around the reduction of risk to the healthcare providers, pharmaceutical companies, and insurers. There was no content choreography. No one ever took the time to think through what marketers would call the customer journey. The patient journey is similar, but remarkably different, especially in life-and-death situations.
What I learned from my experience as a patient is that most doctors know a lot about their specialty (e.g., brain surgeons focus on brain surgery; oncologists on cancer) but not a lot about communication science. When communication fails to serve the needs of the patient, nurses tend to pick up the slack and try to provide the context and level of detail needed for their patients to feel comfortable, confident, and informed. They also are aware of the sensitivities of their patients and the emotions they may be feeling while in their care. As a result, at least in my experiences, they were often the ones to design ways to accommodate patients and their information needs by devising communication workarounds (or inventing new content that did not exist, but should).
[VG]: Well, it is a given that technology lies at the heart of setting up an integrated healthcare ecosystem — for diagnostics, insurers, pharmacy, caregivers, and the patient. With artificial intelligence (AI) and machine learning (ML) empowering a real data-driven approach to eliminate inaccuracies, to add speed, and to setup right context across people and devices, how do you think that technology can contribute more to address the broken content experiences?
[SA]: Wow. That’s a great question. And, I’d love to say that these technologies will rescue us from the content hairball disguised as patient-focused information today, but that would be an overstatement.
For the immediate future, we’ll have to continue to struggle to overcome these communication challenges in ad hoc ways, I’d imagine. The problem is integration. There needs to be a seamless and secure way to weave all of the various information systems together to allow everyone to collaborate on patient care. But, there also needs to be some big work done in the area of the patient journey.
Until there is a commitment to design content to work for patients (instead of focusing on protecting hospitals and others from lawsuits or compliance issues) things won’t get much better.
Machine learning and advanced artificial intelligence hold many promises. I’m sure there will be incremental improvements along the way, but I fear that the bigger changes needed will not be made quickly, due in part to a wide variety of challenges (regulatory compliance, cost, privacy, security, language, technology, standards), and lack of a talented pool of medical informatics experts with the requisite content engineering experience and skills needed to tame content chaos.
[VG]: As I saw in this article in Fortune magazine, neurotechnology-empowered BCI (Brain Computer Interface) is helping tens of thousands of people in the world with artificial limbs to make a real difference in their lives. Do you think that right study and use of neuroscience can contribute to how content strategists kick off their discovery and then engineering plans? And for the other way around, how do you think content strategy can help in BCI-like experiences for more effectiveness, for more success, and possibly to reduce costs too?
[SA]: Those are deep questions. I’m just now exploring the possibilities of the cognitive revolution, so my crystal ball and predictive ability in this arena is limited. But, I will say that there is already technology available that can do things like allow workers to operate systems with only the power of their thoughts.
I’m attending an event — Mental Work — in San Francisco that showcases the first showroom in the world to be operated exclusively by the workers’ minds.
I’m anxious to better understand the possibilities and where those technologies (and our peers and our discipline) fit.
[VG]: While leaders in retail and travel are investing aggressively in their customer-experience goals, the healthcare as an industry is still stuck on ‘provider-payer’ mode. The silver lining is that a few startups such as Circle Medical believe in the ‘patient-centric’ strategy, centered around the right ecosystem of organizations, devices, technology, and patients. What do you think are the barriers for big healthcare institutes to invest in such ecosystems?
[SA]: Well, there are far too many barriers to hurdle at this time. I think the primary obstacle is that it’s not easy or cheap to fix the problem and many mistakes will be made along the way. Few leaders want to be the one responsible for a major failure, so I believe that as long as organizations can continue to operate as they have, they will. Without a regulatory requirement to optimize and harmonize these systems, it likely won’t be done.
However, as you pointed out, startups can drive change. They must be disruptive enough to innovate without introducing too much risk for providers in order to lead them toward a digital healthcare revolution.
[VG]: AI and bots are playing a positive role in hospitality and retail, and it is a welcome sign for their personalized customer-experience goals. In healthcare, ‘data privacy’ and ‘regulatory compliance’ are integral to an organization’s success. Then there are ‘reimbursements,’ and ‘ownership’ of this fragmented patients’ experience. How do you think AI and bots are placed to help organizations setup the required framework around these four important levers?
[SA]: It’s going to be a big mess. But, eventually, I see bots helping to register patients and guide them through complicated patient journeys. Until then, I think security (or lack thereof) will prevent rapid growth in this space. I’m just waiting for the first lawsuit involving a chatbot being hacked or accidentally disclosing patient information.
That’s a bit pessimistic, but also realistic. Hospitals, pharmacies, medical device makers, insurance companies, and other regulated healthcare businesses are heavily and strictly regulated. Their work is filled with potential landmines that could increase risk and open them up to unnecessary — and costly — liability. But, there are experts in the field looking at this challenge and trying to sort things out. Over time, medical informatics and content engineers and strategists will determine the best ways to tackle the bigger issues and put technologies in place where they can do the most good.
[VG]: As content strategists, our work involves asking questions. And empathy drives our discovery and analysis work. Now when you are on the other side of the table as a patient — did your work experience help you make right adjustments while responding to the content-specific gaps? And how do you motivate yourself to overlook these gaps?
[SA]: There’s a lot of detail involved in answering those two questions. First, I’m not always the most empathetic person in the world. But being a patient undergoing treatment for a life-threatening disease like cancer changes how you see things. As a patient, I began to see the value of appropriately placed empathy in healthcare content. My knowledge of content strategy made it fairly easy for me to get frustrated attempting to find clear and concise content during treatment. Luckily, as a content strategist, half of my job is asking the right questions. So, I used my investigative reporting skills to track down the information I needed. If it dawned on me that others would benefit from such information, I would ask if I could talk to the person responsible for creating the content so I could explain the patients’ view of the information provided.
Healthcare staffers in charge of creating content are not always experienced or expert enough to see what seasoned content pros might see. They don’t think about things like information management, content reuse, terminology, content design, or techniques like progressive disclosure. Sometimes they are in charge of the content provided to patients (like signs or handouts) simply because they are the person seated closest to the laser printer.
[VG]: Given a chance that a big healthcare institute hires you as a consultant and assuming that the expectations and goals of hiring you are clearly defined, what will be your pitch or the message on day one in the kickoff meeting?
[SA]: I’m not expecting that, but should an opportunity come along, I’d have to know they were committed to change and had the needed funds and other resources to make it all work. I’m not the right person to fix all the problems, but I am handy in the area of pointing these problems out and helping these organizations rethink the way they create, manage, translate, and deliver healthcare content.
My message at a kickoff meeting would depend on the organization. Hospitals come in so many variations — it is hard to conjure up a standard pitch. A non-profit hospital might have very different business drivers than a federal government hospital or a for-profit healthcare center.
My message would be the same: Adapt or die.
[VG]: Coming back to your health now, is there anything that I can do? Or is there anything that this beautiful community that I see around you on Facebook — can do?
[SA]: No, thank you. I’m good. My peers from around the globe have reached out to me with words of wisdom and solace, and with heartfelt good wishes, handmade gifts, flowers, cards, and cookies. My family and partner have been wonderful support system for me. My industry friends even filled in for me at The Content Wrangler to ensure our popular webinar series and conferences continue to be held without any trouble. I am grateful, fortunate, and humbled.
Thank you Scott, for your thoughtful comments. I wish some leaders in healthcare hear the whistles and we may see things changing for better. I wish you complete and fast recovery, to see you back on stage speaking on content experiences.
[Update on 18 May 2018: Kevin Perrotta hosted Scott Abel in a webinar on the same subject — about Scott’s experience and thoughts while undergoing cancer treatment. See the slides as these are an important extension to this Medium post interview.]
PS: You may also like Content Conversation with Scott Abel, the first time when I interviewed him in 2015.