My Care. Your Rights

I have, it seems, been laboring under a misconception.  All these years I liked to believe that the healthcare system was about the patient.  Sure, lots of people made money in the process, but that was OK with me, as long as how they made it was still about the patient.

That was naive.  I knew that a few people in healthcare were too focused on the money part of things, but what I was not paying enough attention to was that, for some healthcare professionals, what they do is about their beliefs, not my care. 

iStockPhoto-Cimmerian

The case in point was the recent situation in Peoria, Arizona, where a young woman was denied service by her pharmacist.  Nicole Arteaga was nine weeks pregnant when her doctor told her the baby's development had ceased.  The doctor gave her an option for a surgical procedure or for a prescription drug that was likely to cause her to miscarry, and she choose the latter. 

The pharmacist understood what the drug did, questioned why she was taking it, and refused to refill it due to "ethical reasons" -- which is permissible under Arizona law (and in several other states).  As she detailed in a Facebook post:

I stood at the mercy of this pharmacist explaining my situation in front of my 7 year old, and five customers standing behind only to be denied because of his ethical beliefs. I get it we all have our beliefs. But what he failed to understand is this isn’t the situation I had hoped for, this isn’t something I wanted. This is something I have zero control over. He has no idea what its like to want nothing more than to carry a child to full term and be unable to do so. If you have gone thru a miscarriage you know the pain and emotional roller it can be. I left Walgreens in tears, ashamed and feeling humiliated by a man who knows nothing of my struggles but feels it is his right to deny medication prescribed to me by my doctor.

Ms. Arteaga ultimately was able to fill her prescription at another pharmacy -- across town -- and both Walgreens and the Arizona State Board of Pharmacy claim they will "investigate" what happened, although a Walgreens spokesperson admitted to Buzzfeed that company policy "allows pharmacists to step away from filling a prescription for which they have a moral objection." 

What if there hadn't been another pharmacy in town, or another pharmacist who didn't have a "moral objection" to filling her prescription?  What if, for medical reasons, there hadn't been time to investigate other options? 

Photo: Reuters

Example number two: the Supreme Court just overturned a California law that required "crisis pregnancy centers" to tell pregnant women about the availability of abortion services.  These centers typically oppose abortion on religious grounds.  The law did not require the centers to provide such services, mind you, just to alert women that they may have options other than the ones those centers choose to inform them about. 

 Justice Kennedy concurred with the majority, claiming: "Governments must not be allowed to force persons to express a message contrary to their deepest convictions."  

Governments have, of course, for years had no qualms about requiring abortion providers provide a number of messages that are contrary to their deepest convictions -- some states require that they require pregnant women to get medically unnecessary ultrasounds before obtaining an abortion! -- but apparently it matters whether you agree with the message or not.

None of this should, in 21st century America, be a surprise.  We now have a "Conscience and Religious Freedom Center" within HHS, aimed at protecting "health care providers who refuse to perform, accommodate, or assist with certain health care services on religious or moral grounds."  The website lists a string of federal laws that have helped bring about such "conscience protections," most of which revolve around abortions and related procedures. 

But it is not just federal law and it is not just about abortions.  In Texas, for example, pharmacists have "exclusive authority" about whether to dispense a drug.  They can choose when they do not wish to, and they don't have to explain why then they opt not to. 

As Sonia Suter, a bioethics and law professor at George Washington University, told The Verge, recent interpretations of the "conscience clause" are troubling:

It defines actors pretty broadly, so it’s not just employees, but anyone involved: volunteers, trainees, contractors, health care entities. And they’re also broadening it beyond religious objection to moral objection, and that has implications for other kinds of health care like vaccinations and gender reassignment surgery, too.

Where does the line get drawn?  What about a healthcare professional refusing to treat gay patients?  What about one refusing to treat minority patients?  What about male healthcare professional refusing to treat a female patient?  Somewhere there are healthcare professionals in America who have religious or "moral" beliefs that might dictate each of such actions, and we should be very concerned.

PHOTO ILLUSTRATION BY THE DAILY BEAST

We've had a lot of debate about a baker refusing to make a custom wedding cake for a gay couple, even taking it to the Supreme Court.   When that baker is a doctor, that couple is someone in dire need of medical care, and instead of no cake it was that care which wasn't delivered, well, then we'll see what kind of country we are. 

You see, it's not supposed to be about their religious or moral beliefs.  They have every right to have them, and to express them.  But when someone becomes a healthcare professional, it's not supposed to be about them or their beliefs.  It is supposed to be about what is best for the patient.  It is about using their medical knowledge and training to help the patient as best they can, to the utmost of their abilities. 

If doing that conflicts with their beliefs, then they are in the wrong line of work.  They have the right to their beliefs, but not the right to have those beliefs interfere in doing what is best for the patient.

Our healthcare professionals don't have to be like us.  They don't even have to like us, and they certainly don't have to agree with us.  But when we can't depend on them doing what is best for us, then we've got a real problem. 

Towards a Fortnite Healthcare System

The World Health Organization (WHO) just included "gaming disorder" as a new mental health condition, listing it is its 11th edition of the International Classification of Diseases.  My first reaction was, oh, good, now I have a good excuse to write about Fortnite.

A year ago I hadn't even heard of Fortnite.  That's no surprise, because few had; it wasn't officially released until July 2017, and even then the free, most popular version -- Fortnite Battle Royale -- wasn't released until last September.  It was an immediate sensation, with over a million players within the first month.  It has been smashing numbers ever since.

Source: Chris Ison, The Morning Bulletin

For example, it has had as many as 3 million concurrent users, as many as 40 million players every month, and as many as 125 million total players.  Not only that, they're smashing records for people logging on to simply watch others play it, such as on Twitch or on YouTube.  People watch some 25 million hours of it on YouTube alone.   It accounts for a third of all streaming video views.

And it is not even on Android yet.  It was released on iOS just in March, and launched on Switch last week. 

Oh, and get this: even though the most popular version is free, the game is generating in excess of $125 million a month, mostly from in-game purchases.  They are preparing for a 2018-2019 "Fortnite World Cup," with $100 million in prizes.  $100 million.  For a "free" game.   

In the words of Buffalo Springfield,:

There's something happening here
But what it is ain't exactly clear

Let's back up.  What is Fortnite, and how is the Battle Royale version different?  Both games are basically about survival, trying to fight off "zombie-like monsters."  In Battle Royale, you and 99 other co-players fight to see who can be the last to survive, in a "Hunger Games" type scenario.  Although there is plenty of killing in both games, the violence is generally considered more "cartoonish" than gory, as in many other shooter-games.

What makes the Fornite games more interesting, and which has caused them to be described as different permutations of "Minecraft meets ____", is that there is an emphasis on building -- in this case, forts, traps, fortifications, and weapons.  Ingenuity and planning are as important as quick reactions or shooting skills. 

As is probably already clear to any gamer, I am not a video games person.  Aside from an inexplicable and short-lived "Angry Birds" fascination a few years ago, I don't play and haven't played video games.  But, as the above illustrates, just because I don't participate in a trend doesn't mean I can't see one.

The Greatest Generation was a movie generation.  They went to the movies in record numbers, and movies helped set as much as reflect cultural norms.  My generation, Baby Boomers, are a television generation.  We grew up with it, watched as much of it as we could, even when there were only 3 or 4 channels to choose from, and even when those choices might have offered shows like My Mother the Car or The Beverly Hillbillies. 

You could make an argument that post-Baby Boomer generations -- Gen X or Millennials -- are Internet generations, but you could make an equally compelling argument that they are video game generations, especially since the latter preceded the former (think Nintendo, Sega and Atari, or Space Invaders.). 

The Greatest Generation's idea of the healthcare system came from those movies.  Dr. Kildare or Dr. Gillespie were the models: all-knowing, never to be questioned (and, of course, white men).  They couldn't always cure you, but they always had great sympathy and your best interests at heart. 

True to our TV bias, Baby Boomers' model physician is probably closer to Hawkeye Pierce -- still all-knowing and good-hearted but more irreverent.  We still didn't question much, but as the "cool," young generation, we demanded anything and everything that might help us stay young -- knee replacements, face-lifts, and, off course, plenty of pills. 

Gen X/Millennials' model physician?  They don't have one; they're too busy building forts and fighting off zombie-like monsters.  Besides, they always get another life.

Unfortunately, our healthcare system is based too much around its biggest current users -- the Greatest Generation.  Don't ask questions, don't expect too much, don't trust technology too much, and go to the hospital when you're sick.   Be good patients; be patient. 

I'm convinced the only reason hospitals have moved to private rooms is because Baby Boomers started having babies of our own.  Don't believe it?  See what happens when we start going to nursing homes. 

If you tell a Gen X or a Millennial that the healthcare system still uses faxes, its technology often can't share data, that you can't usually schedule appointments online and that even doing video-visits remains a novelty, well, they'll probably shake their head in disbelief and unpause their high def, interactive video game. 

The healthcare system is starting to design for the Baby Boomers -- in-office wifi, patient portals, electronic records, those private hospital rooms, etc. -- but its feet remain firmly planted in the past, in Dr. Kildare days.  By the time it has fully caught up to what Baby Boomers want and expect, we'll mostly be dead and those Gen X and Millennials will be wondering what kind of bad video game they've found themselves stuck in. 

The future of the healthcare system is going to be participatory, cooperative, interactive, iterative, online, rewarding, challenging but fun.  In other words, more like a video game.  To the Greatest Generation and to many Baby Boomers, that sounds like a warning; to everyone else, it sounds like a hope. 

Source: Scrubbing.in

In the rest of the economy, technological adoption is rising faster than ever.  Consumers expect the latest iPhone, the newest technology, the fastest option.  Healthcare can't say that.  Patients who expect to listen to Dr. Kildare or even Dr.Pierce have been willing to tolerate that, but the video game generations will not be. 

It takes healthcare a long time to change, but it better start preparing for its Fortnite future right now.  Whatever that means. 

We're Gonna Need Bigger Post-Its

I read a couple of stories on design thinking recently, which I'll get to shortly, but first I want to cite a well-known design maxim, usually attributed to designer Paul Rand:

If you can't make it good, make it BIG;

If you can't make it big, make it RED!

When it comes to healthcare, we certainly have a lot of things that are big, and probably the only reason more aren't red has to do with that color-of-blood/code red thing.  But when it comes to design that one would really call good...not so much.

In NEJM Catalyst, Amy Compton-Phillips and Namita Seth Mohta reported on their Care Redesign Survey, which surveyed the NEJM Catalyst Insights Council.  The survey found that there was strong support for design thinking (90%+), and was seen as valuable for a wide range of health care issues.  Yet less than a quarter use design thinking regularly. 

When asked to list the top three barriers to applying design thinking to healthcare problems, respondents said:

• limited buy-in from decision-makers (52%), 
• limited understanding of design (47%), 
• insufficient design training (32%),
• uncertainty about ROI (28%), 
• uncertainty about how it is different from other process improvement methods (27%),  
• unclear ownership of design thinking (26%),
• identifying major problems may require overhaul of certain kinds of procedures (26%),
• patient needs don't always align with clinician needs (24%),
• No access or resources for technology/innovation experts (19%).

Clearly, a big part of the problem is not understanding design thinking or design, and how they should fit into everyone's job.  Still, having about a quarter cite the possibility that procedures might have to change (oh, no!) suggests a certain inertia that is troubling, and that another quarter is worried that patients needs might be in conflict with clinician needs raises the question of for whom the system exists.

As Stacey Chang, Executive Director at the Design Institute for Health at the University of Texas at Austin, put it: “The dysfunction of our modern health care system isn’t about failure of intention, but rather pursuit of siloed and sometimes conflicting priorities.”

I'm shocked, shocked...

The authors conclude, hopefully:

In this new era of patient-driven care delivery, it’s not enough to adapt existing systems; we need to create something better. Design thinking can get us there.

Designer Jon Kolko might not be so sanguine.  In a recent article, he notes a backlash against design thinking -- it is "kind of like syphilis;" it is "bullshit;" it is a "failed experiment" -- and worries that it "has warped into something superficial."

It isn't that Mr. Kolko is against design thinking; not at all.  He just thinks that too much of it isn't being done by "people and firms practicing design thinking by making things, driven by practitioners aware of the history of making things and skilled in the craft of making things." 

As he laments:

It’s safe to say that most people practicing popularized design thinking haven’t explored the psychology of problem solving, the history of union-led interventions in Scandinavia, or the idea of design as a liberal art...Similarly, they probably haven’t spent years drawing, building and modeling, and giving detailed form to complex ideas.

He summaries the critiques of design thinking as follows:

• "It takes a thoughtful, complex, iterative, and often messy process and dramatically oversimplifies it in order to make it easily understandable.
• It trivializes the role of craft and making things, which is fundamental to the process of design.
• It promotes “empathy lite”—as if an empathetic and meaningful connection with people could be forged in hours or even days.
• It’s become a tool of consultancies to sell work, not to drive real impact."

Put more succinctly, "today’s design thinkers lack craft, lack intellectual foundations, and can’t make things."  Ouch. 

Instead, he says, we have workshops, TED talks, subject-matter experts, working sessions, and the like.

The result: "And instead of beautiful, usable, significant, and relevant designed things, we have “canvases” and “playbacks” and “design sprints”—and lots and lots of Post-it notes."

You knew the Post-it notes had to fit in here somewhere. 

As critical as Mr. Kolko is about how much of design thinking is being done now, he sees a silver lining:

Organizations seek silver bullets, and they’ve moved from the shiny objects of Six Sigma to agile to lean to design thinking. It is guaranteed that companies will move on from design thinking to the next big thing. But in its wake, the popularity of design thinking will leave behind two benefits: validation of the design profession as real, intellectual, and valuable—and a very large need for designers who can make things.

In other words, leave it to the professionals.

I'm somewhere in the middle.  Too many of healthcare's problems are because we've left them to the professionals.  Too often those professionals end up thinking more about their own interests (patients needs not aligned with clinicians' needs???) or don't really understand how people actually use things in the healthcare system (case in point: EHRs). 

It doesn't have to be this way.  For example, a research team at University of Pennsylvania wrote in Fast Company about how they've "reimagined" EHRs by designing them alongside clinicians.  They call for "the kind of co-creation among clinicians and developers we expect from contemporary design in other industries." 

Now if only design could also involve patients and everyone else involved in the system. 

Design thinking is not a magical bullet.  But it is something we should all be mindful of, all the time.  How do we improve things?  How do we make things easier?  How will this impact that, and them?  

Similarly, design isn't a magic bullet either.  We have some lovely healthcare buildings that look pretty but that still manage to be confusing and scary places for patients and their loved ones. 

It's easy to take a too narrow view of what design includes and whom it impacts.  Apple's products look great and have slick packaging, sure, but their success comes more because they are easy to use and do what users want, in ways they understand. 

Until we get to that point, bring on the Post-its. 

Healthcare: Cheater's Edition

If you grew up in the pre-video games era, you have probably played Monopoly.  If you have, chances are you've probably cheated too; Hasbro's own research indicates half of players do.  So they did what, in hindsight, seems like the obvious solution: they created a version of the game that explicitly builds in cheating.  Monopoly Cheater's Edition launched June 1.

My first thought was, gosh, what kind of game builds in cheating?  Then it struck me: healthcare. 

Of course, healthcare is not a game, but there certainly are plenty of rules (some of which make sense, some of which don't), and plenty of, well, if not outright cheating, then at least gaming.  And let's not minimize the outright cheating. 

Think about it:

• Our goal is, or should be, to be in good health, but too few of us actually do the things we should be doing to help ensure that.  We cheat on our exercise, we cheat on our diets, we cheat on our use of alcohol/tobacco/other drugs, we cheat on our work/life balance.  And our health suffers as a result.
• Healthcare professionals' goal is, or should be, to put patients' well-being above all, but it seems like we've drifted away from that.  We get too much care.  We say we want more primary doctors, but as the salary disparities between that and specialty care widen, more physicians opt for the latter.  Most physicians pride themselves on their independence, but increasingly are employed by health systems or other corporations, and all-too-often accept money from vested interests.  And, of course, there are those who treat Medicare, Medicaid, and private insurance like their personal piggy banks.  
• Medical device and pharmaceutical companies are supposed to deliver products with better outcomes and value, but often seem to introduce ones that offer marginal, if any, added benefits but at much greater costs.  Or they just increase prices on existing products, just because they can.  
• We've created an entire industry of "middlemen" in healthcare -- think PBMs or health insurers -- and a corresponding army of administrators that add significantly to the costs and hassles of our healthcare systems but that often don't seem to directly benefit patients. 

Wait, we don't need a "Healthcare: Cheater's Edition;" we already have it. 

Daniel P. O'Neill, David Scheinker/Health Affairs

Let's go back to the Monopoly version for a minute.  It's origin story is as Randy Klimpert, Hasbro's senior director of design and game development, told Fast Company: "We were literally sitting around thinking, ‘what would really corrupt Monopoly?’ And someone said, ‘what if we cheated?’”

The new version doesn't allow unfettered cheating; they took 15 of the most popular cheats, added a few "fun" ones of their own, and relaunched the game, updating the board and pieces while reducing the average play time from over 2 hours to a more millennial-friendly 45 minutes. 

There are also handcuffs -- literally -- involved, but let's not go there.

I'm not suggesting that, when it comes to healthcare, we do as Hasbro did -- simply incorporate known types of cheating into the rules of the "game."  That is not a game we should want to play.  It is not a game that is leading to a healthier or more prosperous population. 

I am suggesting that if the "business model" of something as old as Monopoly can get updated, maybe we should be thinking more about updating healthcare's business model(s) too.

In a Fast Company article, John Elkington and Richard Johnson (both of Volans) argue that what drives breakthroughs is not new technologies, but new business models.  New technologies are the "shiny" objects that we fall in love with, but:

...tomorrow’s market leaders are the ones already sketching a new business model on the proverbial napkin. Business models are what connects a technology’s potential with real market needs and consumer demand.

They go on to postulate that breakthrough business models come from unmet needs, needs "...that are often left unmet not because they can’t be met, but because the incumbents have been innovating at the high end of the market, chasing ever larger margins." 

Sound like healthcare?  Lots of unmet needs, with incumbents mostly innovating at the high end? 

Somewhere tomorrow's healthcare market leaders are sketching out new business models to address its many unmet needs.  Direct primary care is one such attempt.  Approaches like Citizen Health are another.  They won't be the last, and they won't be the most radical.

Here's a more radical example, as outlined by John Nostra: treat our healthcare (and other) data not as the "free" good we keep giving away, but as property.  Our property.

He discusses what a new company called hu-manity.co is doing along these lines, asserting ownership of our own data as a new, fundamental human right.  As Mr. Nostra says:

Simply put, Hu-manity.co has established unique and proprietary technology to establish contracts on blockchains which individuals establish, monitor and modify consent and authorization with corporations for their data

He goes on to conclude: "And as property owners, we all have a stake in the power of data....Now, owning your data could advance to a higher order and the consequences for humanity might just be priceless."

A healthcare system in which we owned our own data and accrued the value from it wouldn't act, or maybe look, much like our current system.  Good.

Here's another radical example (admittedly, only a very brief sketch of a new business model): treat our health as a capital asset. 

We would need to start with a value of that asset; what is a human life with good health worth?  It's a hard question, but some economist somewhere could undoubtedly put a value on it.  Things that improve or maintain it are investments.  Things that cause our health to decline are spending. 

Suddenly health habits and treatments would have a clear consequence.  We would have to consciously think about how we manage and maximize our capital asset.   Who "pays" and how, who gets the "returns on the investments" and how, would all have to get worked out.  Again, hard, but not impossible. 

Treating our health as a tangible, long-term asset, with explicit "investments" and "spending," would radically change the incentives in healthcare, and create hosts of new business models.  There are some pretty smart people out there who might be able to make them work.

Now, that's the kind of "cheating" that could make healthcare better.