They Know When You Are Jogging. They Know When...

You may have never heard of a "heat map" until recently, but chances are you have now.  News accounts are all over a finding -- by a 20 year-old Australian student on summer break -- that such a map by fitness tracker Strava showed locations of users all over the world.  Including, in particular, U.S. soldiers and possibly covert operatives in combat areas.

But let's not blame Strava.  This is a way bigger problem. 

According to The New York Times, Nathan Ruser wasn't looking to expose locations of our military.  He isn't even a Strava user.  He studies international security, and follows the war in Syria closely. 
His father had made an off-hand remark that Strava heat maps -- which show activity and locations of users of their fitness apps -- show "where rich white people are."

So, as he told The Washington Post, "I wondered, does it show U.S. soldiers?"  (My first thought of "rich white people" wouldn't be U.S. soldiers, but you have to give the kid credit anyway).  He immediately zoomed in on Syria. "It sort of lit up like a Christmas tree." 

Once he realized what he found, he and others began to understand the extent of his findings.  It isn't just Syria, it isn't just U.S. military (which has encouraged the use of devices like FitBits), and it isn't just American citizens.  Strava claims some 27 million users, and they are all over the world. 

The heat map doesn't care if you are on a classified base, working at the Pentagon, or maybe just playing hooky from school or work.  The maps aren't produced in real-time, thank goodness, but the data that generates them is, and even if produced after the fact they could be used to establish locations or patterns that we might not want known. 

The military says they are "in the process of implementing refined guidance on privacy settings for wireless technologies and applications," and Strava says it is "reviewing features that were originally designed for athlete motivation and inspiration to ensure they cannot be compromised by people with bad intent." 

OK, good.  But, as developer Steven Loughran told Wired: "The underlying problem is that the devices we wear, carry and drive are now continually reporting information about where and how they are used 'somewhere." 

Maybe you didn't join Strava.  Maybe you don't even own a Fitbit.  Chances are you do have a smartphone, tablet, or computer, so you are at risk.  But what if you have a pacemaker or other Internet-of-Things (IoT) device implanted?

The Atlantic

That is the dilemma posed by Neta Alexander in The Atlantic.  She unexpectedly had a pacemaker implanted, and has only gradually come to realize some of the concerns it raises.  She quotes Lior Jankelson, a physician at NYU's cardiac center: "there are at least tens of thousands of Americans with cloud-connected devices that could be monitored from afar." 

That's good, right?  You want your cardiologist to know how your pacemaker is doing.  You probably even are OK with the device manufacturer tracking it, in hopes it will help them monitor defects.  This is the power of the cloud, and the hope of Big Data.

The trouble is, they're not the only ones who might be able to monitor it.  For example, hackers who now demand ransomware from hospitals for their records might certainly find IoT devices even more inviting.

Even more frustrating, Ms. Alexander found that gaining access to the data her device was generating was problematic:

I was told I would have to sign a release form and wait for its approval before the data could be sent to me (via postal mail, no less).  The process might take several weeks, and I would have no way of knowing whether the data delivered would be partial or complete...gadgets inside one's body are gradually shifting control of personal information from users to corporations."

She goes on to complain: "The potential threats posed by hackers are distressing, but so is the notion that my pulse has been monetized."

As it has oft been characterized, when it comes to services that collect our data, we're not the customer, we're the product.

We know this is a problem.  To some extent it is our fault, by not really paying attention to the data policies of services we use, and by not demanding more protections for our data.  We could each do more.

Still, Zeynep Tufekei argues that:

Data privacy is more like air quality or safe drinking water, a public good that cannot be effectively regulated by trusting in the wisdom of millions of individual choices. A more collective response is needed.

The European Union is trying to address the problem with the General Data Protection Regulation, due to take effect May 25.  It imposes restrictions on what data can be collected, stored, and use by tech companies, who are scrambling to figure out how to operationalize.
.
The regulations won't solve all the privacy problems, but they go beyond anything the U.S. is doing.  Shame on us.
 
Look, things are going to get worse before they get better.  We're still at the early stages of the data economy.  We're still learning what can be done with Big Data: how to gather it, how to analyze it, and how to use it to specifically target us.  The appetite for our data from companies will only increase, and the capabilities to collect, transmit, and use that data will only expand. 

This is the future, and it may mean things we have a hard time accepting.  Peter Singer, a security guru, put it bluntly in another Wired article:  "Both militaries and the public need to come to grips with the fact that the era of secrets is arguably over."

I start with this: data about me should be mine.  If I allow someone else to collect it, I should get clear benefits from it, and should know how else it is to be used by that someone.  I should have control over with whom else it is shared.  And if it is monetized, I should share in that. 

We may be past that.  We may, indeed, be past the era of secrets, and into the world where all of our data flows constantly.  Data is out of the privacy barn, and it isn't coming back in.  All we can do is to try to best corral it.

Everything in Healthcare Is Design

I've been thinking a lot about health and communities lately, what with Steve Downs' building health into the OS vision, Alphabet's CityBlock initiative, and -- oddly enough -- Amazon's recent narrowing of candidates for their HQ2.  I've even written about how what "local" in healthcare might mean in the near future. 

But I keep coming back to Dr. Bon Ku is doing at JeffDESIGN.

I am somewhat late to this game.  Dr. Ku co-founded JeffDESIGN three years ago, as a "college within a college" (it is part of the Sidney Kimmel Medical College of Thomas Jefferson University).  Since then it has received local, regional, and national attention.  Dr. Ku has done a TEDx talk on their efforts.  So I'm not exactly breaking new ground here.

More importantly, though, they are.

Basically, the goal of JeffDESIGN is to teach medical students "to apply design thinking to solve healthcare challenges." As obvious as that might seem, they believe it is the first such program in a medical school. 

Their Health Design Lab is located in a former bank vault (pictured above).  It looks more like a start-up than a medical school classroom, full of configurable tables, computers, whiteboards, even 3D printers.  As Robert Pugliese, JeffDESIGN's associate director says in the video below:

Space is powerful and it changes the way you think.  Everybody in the academic environment is so used to these big stadium-style rooms where you have one person in the middle of the room and everybody else is supposed to be quiet and take notes. You start to realize that that’s not an environment that’s conducive to creative thought.

Students get to take on actual problems in the healthcare system, develop solutions, prototype them, and perhaps see them put into use.  Dr. Pugliese told NextCity:  "These kids are all going to graduate as physicians, and they’re going to have a whole new language that nobody who’s ever graduated from a med school has had before."

That's pretty cool.

Dr. Ku is by training an ER physician, and his experiences there shaped his views of the broader forces impacting health.  As Dr. Ku told NextCity

One of our mission statements is, how do we design healthier cities?...Some people argue that’s not the health system’s job, that’s a public sector job....I want caring about these disparities and social injustices to be in the DNA of physicians.

And, remember, this program -- and, presumably, this point-of-view -- is unique among medical schools.  It shouldn't be. 

We simply don't think enough about design in healthcare.  Not the right designs, for the right reasons.  In a a podcast for Knowledge@Wharton, Dr. Ku complained that:

We settle for design mediocrity, like I said. When we design hospitals, we should want to design the best and most beautiful building which happens to be a hospital, but instead, we design mediocre buildings.

He went so far as to say: "most of us don't realize that everything in health care is design."

Think about that:  Everything. In. Health.  Care. Is. Design.

None of this is to say that Dr. Ku and JeffDESIGN are the only ones emphasizing design thinking in healthcare.  In a 2016 NEJM Catalyst article, Dr. Ku and colleagues gave credit to some of the early leaders, including Kaiser Permanente and The Mayo Clinic.  The indubitable Dr. Joyce Lee --  Doctor As Designer -- constantly preaches this way of thinking.  Design firm IDEO pushes it in their design and education efforts. 

There is no shortage of people who know we need more design thinking in healthcare.  There may be a shortage of them, but there are smart people who are actively working to apply it to our existing healthcare system. 

The problem that JeffDESIGN has, through no fault of its own, is that even if all physicians were similarly trained, physicians can't change everything that needs to be redesigned (or, as some would say, actually designed) -- not in healthcare and certainly not in our society. The problems go much deeper.

To name a few:

• We have medical schools and academic health centers that design programs to teach medical students/interns/residents much about health problems, but not so much about health;
• We have medical facility designers who build those "mediocre buildings" Dr. Ku doesn't like;  
• We have urban designers who plan all those tall buildings, roads, highways, parking lots, retail and housing units, hopefully a park or two, that we live and work in;  
• We have software and hardware designers who have led us into the tech revolution that has profoundly changed our lives;
• We have automobile designers that have turned us into a nation of car addicts, and are now working on 21st century versions that may be self-driving computers-on-wheels;
• We have food designers who know how to most effectively deliver foods that tickle our cravings.

Too many designers are designing only within their bubble, and no matter how well designed that bubble is, all-too-often they don't think enough about how their bubble overlaps with the others.  Our health is impacted by everything we touch and interact with, and many of those interactions are not designed with our health in mind.  

Design thinking in healthcare isn't about making the process of getting medical care easier, although it should do that too.  Design thinking in healthcare should be about making the process of being healthy easier.  That's a much taller order of magnitude, and that's what Steve Downs meant by wanting to build health into the "operating system" of our daily lives.  

Dr. Ku, Dr. Lee, and the folks at IDEO would all agree: you don't have to be trained as a designer to use design thinking.  Dr. Ku boils it down: "I think at the core of human-centered design or design thinking is deep empathy for the end user.”

Certainly anyone working in or around healthcare should have that.  

Patients aren't the end users.  People are.  Care is not the end result.  Health is.  Let's design for them and for that.  If you don't have that kind of empathy, maybe you should be doing something else.

How to Make Heath Care Great (Again?)

In How to Make Gadgets Great Again, Geoffrey Fowler had this takeaway from CES 2018: "Gadgets are broken."  He quoted the Consumer Technology Association's projection that Americans will buy 715 million connected tech products this year, but noted: "Too many of them create more problems than they solve."

Health care's response: hold my beer.

Mr. Fowler listed four suggestions for how to make gadgets great again, and they're worth repeating:

1. Respect our time: we know tech companies can make gadgets addictive, but can they figure out "not how to fill more of our time, but rather help us spend our time better?"  Plus, he also offered this rule of thumb:  "Before making a product, ask yourself: What would the “Black Mirror” episode about this tech be?"  I.e., think about the unintended consequences. 
2. Security is not our job: It seems everything can get hacked, and all of our personal information is at risk.  We try to come up with new passwords and apply security patches, but he points out: "When I buy a car, I don’t have to purchase seatbelts and bumpers on my own—I trust the automaker took care of making it safe."  Why isn't that true for other technology?
3. Focus on the "Internet of Services," not the "Internet of Things."  Sure, tech can connect almost anything, but that isn't the goal.  At the end of the day, we don't care about the device, we care about what it can do for us.  
4. Don't lock us in: We're increasing getting into tech silos. The more data you give one of the silos, the harder it is to switch.  You're either an Apple person or a Google person.  You either like Alexa or Google Home.  Mr. Fowler rightfully complains: "I’ve got four different talking assistants on various devices in my house, but unfortunately my virtual staff doesn’t communicate well with each other."

Let's apply these four suggestions to health care:

1. Respect our time: Ever waited to see your doctor?  Ever had to wait for a test or procedure, or to fill a prescription?  Ever been on hold with your health plan?  Most of us would say "yes" to at least one, if not all, of those.  The health care industry does not respect our time; it values the time of the people working in it.  
2. Security is not our job: Has your personal data -- perhaps including your most sensitive health data -- been hacked at your health plan or health care provider?  Has any of it been sold to third parties, probably without your explicit knowledge or consent?  Whether you like it or not, the answer to these is also probably "yes."  
3. Focus on the "Internet of Services," not the "Internet of Things."  Almost all of us have smartphones, and more of us are getting wearables.  Those of us who need pacemakers or new knee joints will soon find them all connected.  We're even going to swallow pills that are connected.  It's all certainly cool from a technology standpoint, but we're definitely in "Black Mirror" territory here.  We're rushing into health IoT before we really know what we can or should do with all the information, or how to protect it.  
4. Don't lock us in: Health care is consolidating like crazy, whether health systems acquiring more hospitals and doctors, health plans gobbling up other health plans, or new combinations like CVS buying Aetna or United Healthcare buying Davita, all while narrow networks keeping increasing and formularies getting more restrictive.  Oh, and if your health care information is in one silo, don't expect it to be shared with another.  We want choices in health care, but our choices are getting more restrictive.  

When it comes to the things it produces being broken, the tech industry has nothing on health care.

I've already covered things about health care I'm dying to redesign, as well as my thoughts on how a truly 21st century health system might work, but, while all of Mr. Fowler's suggestions also apply to health care, I'll offer four aimed specifically at making it great:

1. Make it about us: We talk about our health care system being all about the patient, but that's not true.  It's about the doctor, the hospital, the health plans and the medical industry -- them, their incomes and their processes.  Hopefully those work to the benefit of us, but, as the saying goes, hope is not a strategy.  What health care organizations focus as intently on us and our health as Amazon does its customers?  The ones which do will be the ones to survive.  
2. Make it about health, not care: There is an oft-cited statistic that 80% of the things that impact health are SDOH -- social determinants of health -- and only a small portion are due to the care we receive, but our spending is the exact opposite.  We need to move focus, and money, away from care and invest in SDOH, away from specialty care and into primary care, and stop trying to do expensive moonshots until/unless we get the basics of our system right.
3. Make it about facts, not faith: Too much of health care doesn't really work, for too many people.  The placebo effect doesn't just apply to placebos, many doctors don't have or know empirical evidence of effectiveness for many of their treatments, and as a result too much of our treatment is wasted, unnecessary, even harmful.  We're supposedly moving into a Big Data fueled, AI-assisted world; we must use those to move to an empirical age of health.
4. Make our data ours:  Our health care data is not ours.  It belongs to the professionals who treat us, to the companies who help us collect it, or to the third parties who buy it.  We may have access to some, although not all, of it, but no one -- no one -- has a compete picture of our health.  If we're going to be person-centered, health-oriented, and data-driven, it has to start with the explicit understanding that any data about our health belongs to us, and we can choose when and to whom we share which of it.

I'm not sure when the golden age of health care supposedly was (or tech's either, for that matter), but I know this: we finally have the tools and the technology to make this it.  The question is, do we have the will?

No Internet? No Problem

Most healthcare thought leaders seem to be at a conference these days, what with StartUp Health Festival, JP Morgan Healthcare Conference, and CES 18.  They're talking about or listening to others talk about the future of healthcare and/or technology. 

Me, I'm just sitting at home thinking about the future.  Specifically, the future of the internet.

The internet has been successful beyond anyone's possible expectations.  It have infiltrated virtually every part of most people's daily lives, to the point where pundits like John Nosta suggest that technology has become almost as important as food, water, and shelter. 

He quotes an Ipsos survey that found 82% of people in India said they couldn't imagine life without the internet.  In India.  The comparable percent in the U.S. was 73%. 

Now we're all excited about the Internet of Things (IoT).  Everything you have or encounter will soon become capable of monitoring and communicating everything you do, and that will include monitors inside us.  The options are limitless. 

But, let's be honest: we've made a mess of things. 

Earlier this year we learned that most of the world's microprocessors have security flaws that leave them vulnerable to hackers stealing essentially anything on them.  The manufacturers and others are rushing to address the problems, but there aren't going to be any easy answers.  We've put an emphasis on ever-faster, and have accomplished miraculous improvements, but the trade-offs are sometimes vulnerabilities like these.   

If your personal information hasn't been hacked yet, well, sorry to tell you, but at least some of your personal information has been hacked.  Moreover, your personal data is currency to an array of companies.  All those "free" services aren't really free, they're just a clever way to find out more things about you, to better target advertising to you or sell your data to some other organization. 

Many thought the internet was going to democratize everything: make more information available to more people -- which it undeniably has -- and move more power to individuals and small organizations -- which it undeniably hasn't.

Think of the concentrated power of Amazon, Apple, Facebook, or Google, any one of which would make John D. Rockefeller envious. 

The underlying problem is that the internet was designed some 40 years ago, the Web over 25 years, and those are ancient in technology years.  We can throw more band-aids on them, but clever people will figure out new vulnerabilities and exploit them -- and us. 

Zeynep Tufekci fears that we're facing a looming digital meltdown.  In her words: "Modern computing security is like a flimsy house that needs to be fundamentally rebuilt."

It's time for something new.   

Some think that blockchain is going to be the next internet, fundamentally changing how we store, use, and ensure the validity of data.  Others caution that it is, perhaps, more like a new Linux.  Blockchain does offer exciting new possibilities, but may not go far enough on its own.

DARPA, which funded the development of the original internet, is looking at something called Dispersed Computing.  It would take advantage of more localized computing resources, such as smartphones, tablets, or autonomous vehicles.  Jonathan Smith, the DARPA program manager, told Fast Company: "Melding computing into communication is a dramatic rethink of the models and architectures we have become accustomed to." 

As Fast Company describes it:

Imagine every cell phone, smart thermostat, fitness tracker, and game console in your house contributing their spare cycles to help process the video you're trying to upload, or educate the machine learning algorithm that runs your AI personal assistant.  When a dispersed computing network wants to borrow your phone, in other words, it's going to be doing a lot more than sending a text.  

Petros Mouchtaris, president one of DARPA's vendors on the project, believes dispersed computing will be "transformational", one that will provide "a much more advanced internet than today."

DARPA is not alone. Wired's  The Internet Is Broken and accompanying article on how to fix it profile several efforts.  For example, Aral Balkan of ind.ie and Tim Berners-Lee are pushing for a more decentralized web.  Mr. Balkan says: "Imagine a world where every citizen owns and controls their own place on the internet." 

Dr. Berners-Lee is leading Solid at MIT, which they hope will decouple data from the applications they produce.  You could choose what data you wanted stored where, and any application that wanted to use it would need your permission. 

Meanwhile, Interdigital's Dirk Trossen is pushing for an "information-centric network," instead of the existing one based on URLs (uniform resource locators).  ICNs would disclose what information is stored, and that information would carry an authentication code that would make anonymity harder, this reducing phishing and fake news. 

Healthcare should be leading these kinds of efforts, not just watching with polite interest.

Healthcare leading the charge to reinvent the internet?  Ridiculous!  This is the industry that still uses faxes!  This is the industry whose providers need to be bribed to install EHRs!  This is the industry that can't connect those EHRs!  This is the industry in which making appointments online, viewing prices, doing virtual visits with providers, or even accessing your records are still viewed skeptically. 

And this is the industry that is already selling your health data to drug companies and others, and this is the industry suffering from data breaches and ransomware attacks. 

All those are reasons healthcare should be pushing for the next internet.

There's no internet-based healthcare colossus.  There's no healthcare organization whose use of internet-technology is the envy of other industries.  Face it: healthcare is only grudgingly accepting the use of computers, and, aside from things like email and organizational websites, is barely taking advantage of what the Internet has to offer. 

Rather than healthcare trying to catch up on internet-based technologies, it should skip to its next iteration.  Instead of a healthcare internet-of-things, let's put those new types of connectivity on a more stable, extendable platform.

Peter Levine of Andreessen Horowitz says: "I'm waiting for the next entrepreneur to come in who blows us away with the idea that there's some next thing that needs to be done relative to [dispersed computing].  I don't know what it is yet, but when I see it I'll let you know,"

Why can't that be someone in healthcare?  After all, it's our lives, and our most personal data, at risk here. 

Of Moonshots and Priorities

I was planning to do a what-I-wish-for-in-2018 post, but I saw a headline that made me wish I'd written it.  It came from a Wall Street Journal story about the woeful state of the NASA moon program.  They headlined it: "If We Can Put a Man on the Moon, Why Can't We Put a Man on the Moon?

It immediately made me think of healthcare.

The U.S. takes the whole "if we can put a man on the moon..." thing as a point of pride.  President John Kennedy put the challenge out there in 1962, at a time the U.S. appeared to be lagging the U.S.S.R. badly in the space race.  It was audacious, it was implausible, it was daring -- the kind of thing that made people love J.F.K.

Not only did we meet that challenge, but we did so within the decade, as he'd demanded.  The effort forced us to take big leaps, invent new technologies, spend lots of money, and risk many lives, including the loss of several.  But we did it.

Since then we've used that precedent to say, gosh, we're so good at meeting challenges, certainly we can accomplish anything we put our minds to. 

So we read about "moonshots" in almost every walk of life, from self-driving cars to Big Data to neural networks to nanobots, not to mention NASA's own moonshot for aviation. Alphabet's X is trying to turn innovation into a "Moonshot Factory," with a long list of bold projects. 

In healthcare, we have Joe Biden's Cancer Moonshot, Startup Health's moonshot list, IBM Watson's health data moonshot efforts, GE's digital health moonshots, among many other calls for healthcare moonshots.  We have so many moonshots we'll need more moons.

It's all very inspirational, but, it turns out, maybe we're not very good at moonshots after all. 

We did land 6 Apollo missions on the moon, but the last of those was in 1972.  We haven't even attempted a manned moon mission since then, and neither has any other country.  A small but dedicated percentage of the population now even believe the moon landing was faked.   

The WSJ article covers a report that NASA commissioned that helps explain why we're not landing anyone on the moon.  Basically, NASA's bureaucracy and contracting makes everything take too long and cost too much, even if NASA had enough money, which it doesn't.  The report calls for more public-private partnerships, to take advantage of the burgeoning private sector space efforts. 

Even Alphabet's moonshot efforts are having a fair share of crashes. 

B.F. Skinner wondered about the difficulty of improving education versus putting a man on the moon, and we just as well could ask the same question about improving healthcare.

These are things we could do.  We just don't. 

We like to believe we have the best health care system, but we don't.  Its problems are well known.  The U.S. spends too much money, mostly because our prices are insanely high compared to other countries.  We waste too much money and have too much unnecessary care. 

Our outcomes are average or worse.  Our already mediocre longevity is getting worse.   Some 28 million people still don't have health coverage, which represents the lowest level in decades but which is soon expected to get worse.  Even coverage doesn't ensure affordability.   

We continue to invent new drugs, devices, and treatments, but usually at higher and often jaw-droppingly high prices, and without always offering much incremental benefit.  We allow physicians to get payoffs -- let's be honest about this -- from those drug companies and device manufacturers.  We tout competition but are allowing both hospital and health plan markets to consolidate at unprecedented levels, despite much evidence that such efforts are only most likely to further increase costs. 

It's as though our car is speeding towards a cliff, but, instead of braking or turning away, we're hitting the accelerator.  Or, perhaps, saying we want to get to the moon but aim for the ocean. 

So, spare me the moonshots.  Spare me the big goals.  Spare me the expensive innovations.  Let's get the basics right first. 

Too much of healthcare has become like NASA.  Its processes are too slow, its organizations too bureaucratic and too inwardly focused, and everything is much, much too expensive.  Its regulations are expressed designed to keep outsiders out, to make barriers to entry high, ostensibly in the name of patient safety but, in many ways, more to preserve turf. 

The analogy to the new NASA report, which recommended public-private partnerships, might be more partnerships with non-healthcare organizations.  Amazon is the one perhaps most expected, and feared, to shake up healthcare.  Jeff Bezos, after all, is famous for saying "Your margin is my opportunity." 

As if anyone can figure out what the margins really are in healthcare, with confabulated charges, "non-profits" that aren't, padded salaries and superfluous jobs, and an array of middlemen -- think PBMs -- who add costs but not much value.  It makes the defense industry look like a hyper-competitive, transparent industry. 

The thing that made the actual moonshot successful was that, from top to bottom, the goal was clear, and shared.  In healthcare, that's almost never true.  We say it's about the patient, always about the patient, but that's hypocritical.  There are lots of goals and lots of priorities, often conflicting. 

A healthcare system that was truly about the patient would not look or perform anything like ours does -- and a true system of health would look at health first, and care as a last resort, so "patient" would never be the center. 

We would be. 

One of the hidden secrets about healthcare is that when doctors become patients, they don't tend to choose much of the care they typically give to patients, such as with end-of-life decisions.   If all care was treated that way, well, it's hard to believe we'd keep doing things the way we do now. 

Want a moonshot?  How about this: everyone working in healthcare should treat every person they deal with -- directly or indirectly -- as though they were themselves, or their parent, or their child. 

It sounds like a slogan.  It sounds too simple, and too unlikely to accomplish anything.  But so was "I'm helping put a man on the moon."

It's not about the moonshot; it's about the priorities.  Let's make this one ours.