Healthcare’s inexorable march toward value-based care has brought with it a focus on what’s best for the patient. Instead of routinely pushing people from one billable appointment to another, providers of all types are, to varying degrees, beginning to understand that more care doesn’t necessarily equal better care.

This shift in policy and philosophy is certainly welcome, and long overdue, but healthcare organizations (HCOs) must be sure to push their good intentions in the right direction.

Take, for instance, the hospital waiting room. The longtime dumping ground of year-old magazines, well-worn chairs, and grainy television sets has been transformed into a bright, comfortable, and almost welcoming place. Swanky waiting rooms have spread throughout the hospital, too; patients can sit in comfort as they await exams or consultations in various internal departments.

You’d have a hard time finding anyone who prefers the older, dingier waiting rooms. But the esoteric improvements mask a more fundamental issue: HCOs are focusing too much attention on patient experience and satisfaction, trying to compete with hotels, and not enough on honest-to-goodness engagement. Instead of spending so much time, money, and resources on making waiting comfortable, hospitals should address why patients are waiting.

The rationale for this misplaced focus isn’t hard to find. In a world of quality metrics, HCAHPS scores, and innumerable “top hospital” rankings, the need and desire to improve experience and satisfaction is certainly understandable. However, a good waiting experience isn’t the same as a good care experience – or, for that matter, a good understanding of how to make the right decisions to improve health and well-being and spend less time waiting to receive care in the first place.

Nice waiting rooms are, well, nice, but they remain a holdover of the fee-for-service world. Think about your auto mechanic. The free Wi-Fi, fresh coffee, and clean bathrooms aren’t there to entice you to leave; they entice you to come back (and spend money) the next time your engine starts making funny noises. If anything, a posh waiting room is a form of revenue cycle management (RCM), since it’s all about bringing repeat customers through the door.

Waiting rooms don’t improve engagement. That’s why Geisinger Health System CEO Dr. David Feinberg wants to “eliminate the waiting room and everything it represents,” namely a way to build up inventory for doctors at the expense of the patient. The larger issue is that value-based, coordinated care will only succeed when patients are truly engaged in their care. Admittedly, this is a struggle.

As it is, HCOs have enough trouble improving the patient experience, according to a recent Kaufman Hall survey. They know they need to do something, but they say they lack the “strategic insight” to figure out what it is, not to mention the capability to implement such a strategy. This survey did not ask if they had had the capability to upgrade their waiting rooms, but I’m willing to bet they did.

Engagement itself is another giant step forward. It’s hard to fund (big-money donors prefer to see their names on a building instead of, say, an app or program) and even harder to implement (the n=1 strategy of precision medicine means that interventions must be specifically tailored to vastly different patient population segments). Plus, engagement technology must link to a larger value-based technology strategy, which itself requires a shift away from the point solutions so prevalent in healthcare and toward solutions that meet specific clinical or operational requirements within healthcare’s new value chain. Most HCOs lack “strategic insight” into what this entails, too.

Whatever the future holds for value-based care, insurance reform, electronic health records, the private practice, the standalone hospital, or the industry as we know it today, the chief goal of practicing healthcare will remain constant: Keeping patients as healthy as possible for as long as possible so they get as much out of their lives as possible. To that end, HCOs would be wise to not keep patients waiting.

Earlier this month, I returned from a weekend of hiking in the White Mountains, just beyond the boundaries of cell reception and Wi-Fi availability, to learn that Jess Jacobs passed away. She was only 29.

Jess suffered from two rare conditions – postural orthostatic tachycardia syndrome, an autonomic disorder, and Ehlers-Danlos Syndrome, a hereditary disease of connective tissue. Given that combination of conditions, she’d been dubbed a unicorn, a rare and beautiful animal.

Like everyone with multiple chronic conditions, Jess was more than just a patient. In particular, she was an accomplished healthcare professional. Jess worked for Aetna’s Innovation Lab and, before that, HHS. According to MedCity News, she led the marketing campaign for Text4Baby, arguably healthcare’s gold standard for patient engagement success.

Many in the healthcare IT community knew Jess better than I did and have honored her appropriately. Close friends Ted Eytan, Carly Medosch, and Whitney Zatzkin penned the most heartfelt remembrances, while the #UnicornJess Twitter hashtag captures her spirit and promises to improve the patient experience on her behalf.

The saddest part is that, based on Jess’ experience as a patient, that won’t take much work. Even as an insider – as someone who knew both personally and professionally the inner workings of arguably the most bloated, bureaucratic, inefficient, and wasteful system of any kind in the world – Jess was often treated like garbage. (I’d use a stronger word but would prefer to not get caught in spam filters.)

Jess frequently documented her struggles, whether it was inaccessible bathrooms, unsanitary hospital conditions, over-reactive security personnel, unsympathetic staff or, above all, wasted time. In 2014, she had 56 outpatient doctor visits and 20 ED visits. Applying the Lean principle of Value Added Time, of the 65-plus days’ worth of care she received in 2014, she reckoned that only 1.13 days was actually valuable. That waste output exceeds 98 percent.

This clearly reflects an industry that does not design for people feeling their worst and, therefore, appears to care little for its customers. (Ironic, really, when one considers that “care” is part of its name.) As Jess herself wrote, “There’s no reason that only 4.75 percent of outpatient visits and 0.08 percent of my hospitalizations [were] spent actively treating my condition. There’s no reason that I spent two solid months…of [2014] waiting instead of healing.”

If that’s not enough, there’s plenty more recent evidence that healthcare doesn’t think very highly of patients.

• Health insurers exiting the Affordable Care Act insurance exchanges expect us to believe that their actuaries somehow did not realize the pool of hitherto uninsured Americans would be less healthy, and therefore more costly, than those already covered by employer-sponsored health insurance – especially given that the healthiest chunk of that uninsured group, young adults under the age of 26, was allowed to remain on its parents’ insurance plans.
• Both Aetna and Anthem have hinted that their future participation in the ACA exchanges is contingent upon the federal government approving their mergers with Humana and Cigna, respectively. Otherwise, patients in many rural counties – you know, the ones that suffer from a dearth of hospitals, specialists, and accessible care options – may suffer from a dearth of ACA plans as well. Sure, they’re acting like the for-profit businesses that they are, but something still smells funny.
• Mylan, the makers of the Epipen, have increased the price of its devices, sold in a pair, from $100 to $600 without improving a fundamentally flawed design that places the cap at the opposite end of the needle and results in unintentional injections of people trying to administer epinephrine to someone who actually needs it. Epipen has no competitors, so it can pretty much do whatever the hell it wants. Meanwhile, EMTs in Washington state have built DIY pens using $1 syringes and a $4 vial of epinephrine and – get this – the cap and needle are on the same end.
• A whopping 5 percent of healthcare professionals believe that patients take “complete responsibility” for their care, according to a Xerox Research survey, compared to half of patients. Ninety percent of payers and providers say patients need encouragement to lead a healthy lifestyle, compared to 55 percent of patients. Researchers suggest this is a lack of communication, but it sounds like a lack of respect to me.
• The New England Journal of Medicine has doubled down on its resistance to sharing research data, reiterating a claim made earlier this year that open data hurts scientific progress and, in turn, patients. Dave deBronkart – who probably would not have survived metastatic kidney cancer without open access to an experimental trial – told Stat News that the NEJM editorial, signed by 280 researchers in 30 countries, is “moribund.” He’s right.
• If it sounds like the latest scientific study proving that (insert food or beverage here) does (or does not) cause (insert alarming condition here) was plucked from the air almost at random, you’re on to something. Poorly designed research, studies that can’t be reproduced, and millions of variables all lead to a high noise-to-signal ratio, to the point that one researcher told The Upshot, “I can get you any result you want in any observational data set.” In other words: The results are useless.

Yes, there are plenty of outstanding doctors, nurses, technicians, caregivers, and administrators in healthcare – staffers who go to work every day with the sole purpose of doing what’s best for their patients.

Unfortunately, amid a cacophony of rules, regulations, restrictions, mandates, denied claims, mergers, acquisitions, consolidations, lawsuits, fraudsters, incentive checklists, overdoses, Zika outbreaks, ever-rising prices, greedy executives, grandstanding politicians, burned-out providers, quality scores, rating lists, failed innovations, immature business models, complex billing codes, data breaches, and PR nightmares, the industry has grown even more risk-averse, skeptical, and judgmental.

Patients like Jess receive textbook, CYA medicine that puts the needs of the institution before the needs of the patient. They are shuffled from provider to provider until someone is finally brave enough to listen, learn, and diagnose. They don’t benefit from digital health nearly as much as that those fortunate enough to be healthy. They deserve better.

The news of Jess’ death hit me hard. She was an acquaintance at best, someone I knew entirely through social media, but those interactions were enough to earn my deepest admiration and sympathy.

Jess leaves an incredible legacy. The most valuable component of that legacy, as Mandi Bishop points out, is her data trail. Amid so much pain and frustration, Jess maintained the strength to document everything that happened to her – and, on occasion, to smile. (Would that I could possess even a fraction of that strength.)

We may never fully understand the why of Jess’ passing, but her tireless effort leaves us with the what – the hours, days, weeks, and months she waited for care, for answers, for compassion, for respect. If that awful patient experience – laid bare in spreadsheets, Tweets, and photographs, for all the world to see – doesn’t provide an imperative to change the way we deliver healthcare in the United States, then I’m afraid nothing will.

Editor’s Note:
I actually did know Jess quite well. She was an indomitable spirit with a ready smile and joyous laugh. Her passing hit me hard. The unnecessary suffering she went through during these last few years of her life are a particularly sad commentary, as Brian as laid-out, on the U.S. healthcare system. The legacy that Jess has left us in her writings, her personal documentary of trying to manage two serious and ultimately life-limiting conditions, is one that I truly hope will not be wasted.

It is stories such as Jess’s that inspire me, inspire all of us at Chilmark Research.

Every single one of us has a healthcare story and too often, these are not pleasant ones to tell. I founded Chilmark Research on a simple premise: Through in-depth research, help organizations adopt, deploy and use IT to improve the patient experience. As in Jess’s case, the long-term outcome for her was unlikely to be a good one. But that outcome should not hinder any of us from ensuring that her healthcare journey is not a tortuous one.

Jess and I shared the vision that IT can truly help improve this horribly disjointed and overly complex system of healthcare delivery that we currently have today and improve the patient experience. In her memory, we at Chilmark Research will double down on our efforts to better understand how technology can help all of us move beyond where we are today in the hopes that the future stories of patients will be ones of hope rather than despair.

– John Moore
Founder, Chilmark Research

Much of the rhetoric surrounding healthcare innovation is happy. Smiling young people run along a river on a sunny day, then check their FitBits. Smiling parents hold iPads while they connect to a smiling pediatrician over video chat. Smiling nurses use state-of-the-art equipment as they treat plain-faced but nonetheless hopeful patients.

At its core, though, healthcare is not happy. Sick people want to get better, not receive constant reminders that they are sick. Medical professionals want to help patients, not select an ICD-10 code from a pull-down menu. No one wants to think about what it will all cost.

Thus the recent Healthcare Experience Refactored (HxR) conference in Boston challenged those building the healthcare technology of tomorrow to design apps and devices for users who are at their worst, not their best – to bring empathy into the user experience, to make systems simple, and, ultimately, put the “care” back in “healthcare.”

As we all know, it’s a laudable mission but a difficult one. A billion-dollar innovation is a mere drop in the bucket in a $3 trillion (and growing) market. On top of that, the most impactful and necessary innovations – improvements to clinical workflow and data integration – garner little attention alongside this week’s latest fitness apps or wearable tech updates. Consumers (and the media) care less about the accuracy of the heart rate monitor or pedometer because, look, the watch band comes in fuchsia now!

Clinical workflow and data integration matter because the narrative matters. STAT News recently ran a thoughtful piece lamenting the loss of the patient story in healthcare’s rush to implement electronic health record (EHR) systems. Digitization has no doubt benefitted an industry bogged down with paper, but boiling down a patient’s medical history to a series of bullet points and billing codes fails to capture that patient’s motivations, goals, and obstacles in their journey to better health and wellness. It also chills the patient-physician relationship, as the conversation is interrupted to input information or wait for load screens to disappear.

For too long, the end users of healthcare IT have been treated as an afterthought as paper-based and manual processes are simply replicated using a screen, mouse, and keyboard. With no thought given to workflow or usability, pull-down menus, lists, free-form text fields, and customizations abound – not to mention frustration. That’s why it’s time to kill the patient portal, ditch the cluttered EHR, scrap the standalone schedule, and smash the fax machine.

Healthcare applications and devices in all their forms must be designed for end users, not outdated workflows. They must return joy to the practice of medicine and allow patients to live with their conditions, not cope with them.

Above all, systems should serve patients, physicians, and nurses when they are at their very worst – in the moments following a crushing diagnosis, for example, or the final hours of a double shift in the ED. If users can stand the systems then, there’s no telling what they can do when they are happy.

I got a flu shot yesterday. I was at a CVS, saw a sign, whipped out my insurance and credit cards, and got in line.

Turns out that my insurer wasn’t reimbursing it – I rolled my eyes, paid the 20 bucks, and went about my day.

Ouch…done. Kudos @CVSHealth for easy access to a flu shot. Shame on you @BCBSTX for not covering retail flu shots. #publichealth

— Naveen Rao (@naveen101) October 27, 2014

The tweet I sent out afterwards opened up a full can of worms. Like a white blood cell, the twitter response was quick and targeted. The social media manager was helpful and patient – but it became clear she was operating with her hands severely bound with red tape. I passed along my policy ID via direct message (twitter, not EHR), and she said she would look into it. Thus began a comedy of errors:

• I received an e-mail with a secure attachment about an hour later.
• I tried opening it up on my phone but it wasn’t mobile-optimized so I couldn’t. I asked if she could just e-mail it to me because I was on the road, but she said they are not allowed to do that.
• I set up an account this morning, logged in and saw that I was covered – except that a vaccine requires a prior referral by my PCP, and must be done at an approved facility.
• Since I’d already paid for the immunization, I needed to download a form, contact my PCP, fill it out, mail it in, and keep my fingers crossed that it gets approved before waiting for the reimbursement check to show up in the mail.
• Finally, I typed a response telling them how inconvenient this was for me and how I can’t be bothered. When I tried to submit it I got an “unknown command” screen with a bunch of web jargon I couldn’t understand. I have no idea if they saw my response or not.

Paying a Premium for Professional Incompetence

Let’s start with the basics: communication. I submitted my policy ID number via direct message on twitter so they could look into my particular coverage. Convenient for both of us. Yet when I wanted my coverage info in kind, they 1) forced me to set up a new portal account that 2) wasn’t mobile friendly and 3) didn’t allow me to send a message back to them. HIPAA has done a great job of protecting me from my own health information.

Second is the process, a Frankenstein’s monster right in time for Halloween. I sent my info and set up a new account digitally, which sent me to a complicated PDF form that I need to print out and send via snail mail, to get a check mailed to me that I can then deposit. On one hand, at least some of this is digital now. On the other hand, it’s clear that nobody has sat down and thought this process through from start to finish. It is completely convoluted and inefficient – no digital claims submission process, which means someone is manually entering handwritten data back into a computer. BCBS has proven more than capable of taking my premium payments digitally through a linked bank account…but why no electronic refund process?

Most egregious is the policy and benefit itself – at the highest level, why are health plans giving people a hassle about getting a flu shot? It’s been recommended by the CDC for the last 4 years. My PCP is a good guy, but I’m not going to set up and pay $20 for an appointment to see him (copay cost = cost of the shot at retail), nor will I go out of my way to some designated facility when I can get it done within the confines of my day to day life (a.k.a. the patient workflow). Instead of embracing widespread access to care and leveraging these new venues for consumer-friendly healthcare delivery, it seems health plans’ heads are stuck in the sand.

Bold Claims (For You to Print Out and Mail In)

The point of this diatribe is that health plans just don’t get it. When you go to trade shows and see insurance executives talk about member engagement and digital communities, they are jerking you into in a fictional reality that nobody actually lives in. Apps are talked about with fervor while simple communication by phone and e-mail remains unavailable. “Engagement” today is an archaic world of customer service line robots and long wait times, of paper forms that are printed, mailed or faxed around, of redundant patient portals and non mobile-accessible communication.

While we move towards systems of population health management, health plans (and increasingly providers) are opting for common cents rather than common sense. This is not a secret – almost any interaction with a health plan reveals a deeply entrenched focus on their own financial health rather than that of the general public. This manifests itself as squabbling over which annual lab tests are covered, or pricing out preventative health services under the banner of consumer-driven care. More broadly, the IT systems on which we are spending billions, are purportedly working towards a public health infrastructure (at least, according to the ONC). What happens if the organizations administering large swaths of this system have their shoelaces tied together?

While there are small glimmers of progress – the social media customer service was a nice touch – they still amount to lipstick on a pig. The incumbent health insurers have really become too big to fail. There is a decided disconnect from people that putting up a Facebook page or twitter account can’t repair. Insurance companies talk about a global awareness about our tendencies, our preferences, and our day-to-day lives – yet they’ve changed nothing operationally or culturally. The benefit design would benefit from better design.

With all the mania surrounding the Ebola virus, many have questioned how prepared the US healthcare system really is for such a public health threat. When an insurance behemoth exhibits such levels of gross incompetence when it comes to a measly flu immunization, it’s unfortunate – for everybody – that health plans don’t seem to have much of a plan at all.