Robots for Mom...Or Me

Last week in an The New York Times op-ed, author Maggie Jackson asked the question: Would You Let a Robot Take Care of Your Mother?  Ms. Jackson notes how robots are increasingly being used for assisting in the lives of seniors, which she understands but is concerned about.  "At stake," she says, "is the future of what it means to be human, and what it means to care."

I get her concern.  As I've written about before, we trust robots too easily and tend to feel empathy for them.  We can even fall in love or hurt them.  In other words, we end up treating them like people.  As Matthias Scheutz, a Tufts University roboticist, told Ms. Jackson, "What I find morally dubious is to push the social aspect of these machines when it’s just a facade, a puppet. It’s deception technology."

But, yeah, I'd have let a robot take care of my mom, and I hope robots will be there to take care of me.

Robear  Credit: Riken

My mother, alas, is no longer alive.  She lived to her mid-90's, and her last few years were not atypical.  She went from walking to cane to walker to wheelchair.  She went from driving to needing a driver to take her on errands to having someone do all her errands.  She went from visiting friends to being dependent on friends visiting to sitting at mealtimes with strangers.  She went from home to condo to retirement community to assisting living.  

She went from being independent to having a caregiver come in a few times a week to needing round-the-clock attention.  And by "round-the-clock" I mean checking in on a schedule or in response to her call button, usually at some significant delay.

None of her children lived close, so phone calls and periodic visits were the time we had with her.  The television and the radio became her most common companions. 

Some of her caregivers were caring far beyond the call of duty.  Most did their job professionally.  A few of them she didn't like or was even afraid of.  Most importantly, all of them were there primarily to help her accomplish tasks, and none of them was always there when she needed or wanted them. 

It's too late for my mother, but as I get closer to my senior years, I hope there will be plenty of robots.  Here are some ways they could help:

Exosuits:  As walking and other routine tasks become more difficult, I hope my failing body is augmented by an exosuit.  This is something that the military is all over, but applications for seniors have been touted for years as well.  We talk about "wearables" and mostly mean smartwatches or maybe IoT clothing, but some see robotics built into clothing as well.

See, for example:

We're not there yet, but the progress in just a few years is encouraging.  Good-bye to those walkers and wheelchairs, goodbye to constant fear of falling.  Hello staying safely in one's own home.

Companions: too many seniors outlive their spouses, their friends, their neighbors, and don't live close to their children (who have competing demands in their own lives).  More seniors than we'd care to admit spend too much of their time alone. 

We already have a suite of "companion" robots.  They remind seniors to take pills, help answer simple questions, and coordinate with healthcare providers.  There is Mabu, by Catalia Health, whom Ms. Jackson mentions, or Zora, as well as many others.  Toyota has a whole suite of "partner robots,"

Cory Kidd, the founder and CEO of Catalia Health, explained to MIT News why robots like Mabu could be helpful in care management programs: "What I found was when we used an interactive robot that you could look in the eye and share the same physical space with, you got the same psychological effects as face-to-face interaction." 

As promising as these are, though, Ms. Jackson urges that humans should always know they're dealing with a robot or algorithm, and that it not interfere with human relationships. 

Caregivers: the above two categories are important, but the thing that is hardest to find humans for are the nitty-gritty tasks involved in caregiving.  Tasks like feeding, bathing, transfering, assistance with toileting, and cleaning.  Those involve human contact, often with frail individuals and for very personal needs. 

We have robot maids, beds that can make themselves, robotic shower systems, robots that can clean bathrooms, and robots that can help people transfer in and out of bed or wheelchair.  We may not yet have robots that can directly assist with toileting, but it is only a matter of time. 

We're going to need them.

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It has been pointed out before, but in this month's Harvard Magazine Jonathon Shaw discusses the "coming eldercare tsunami."  It will hit Japan first, then China, and soon enough the U.S. and Western Europe.  There simply will not be enough younger people to take care of the elderly populations -- financially or directly.

The Pew Foundation reported in 2017 that 59% of Americans were not interested in a robot caregiver for themselves or for a family member, but 59% also see it as a realistic prospect.  One respondent said: "A robot would never fatigue, would never get emotional or angry. They have no ego, they would just care for the individual."  Another warned: "The main problem with the elderly is that they get confused. If the robot malfunctions, an elderly person would not be able to manage that situation adequately.”

Ms. Jackson, and many respondents in the Pew study, argue that human interaction and empathy is preferable, but the simple fact is that it is not always convenient, affordable, or possible.  When Boomers start needing more support, we're not going to be happy to rely on underpaid caregivers to help us when they can. 

Fortunately, Boomers and, even more, the generations who follow, are used to technology.  We love our smartphones and are getting used to smart watches, smart TVs, smart homes, and smart cars.  We'll be ready for smart caregiving robots, in all the forms they may take.

The caregiving robots will be too late for my mom, but hopefully not for your mom, or for you and me. 

Down the Rabbit Hole of DOT

I'm a sucker for stories about new uses of DNA.  Talk about DNA for data storage, and I'm interested.   Start developing DNA-based "lifelike" mechanisms that could be used for robots, and I'm intrigued.  Use DNA for computing and I'm excited.  But 3D print a plastic bunny that includes DNA "blueprints" on how to 3D print itself, well, that's irresistible.

We talk a lot about the Internet-of-Things (IoT), but it may be time for the "DNA-of-Things" (DOT).

Researchers from the Swiss Federal Institute of Technology (ETH Zurich) and the Erlich Lab did just that, describing their efforts in a paper in Nature Biotechnology.  They translated the 3D printing instructions for the rabbit in a synthetic DNA sequence, encoded it onto tiny glass beads, and embedded those into the rabbit.  

Credit: ETH Zurich/Erlich Lab

 As one of the authors said: "Just like real rabbits, our rabbit also carries its own blueprint,"  Fittingly, the first 3D printed object that encodes itself is not just any generic rabbit, but, rather, the famous Stanford bunny, which has been widely used in computer graphics 3D testing for 25 years.  

As proof of concept, the researchers have replicated the bunny into the 5th generation using the encoded DNA.  One of the authors, Yaniv Erlich, says, presumably tongue-in-cheek: "Plus, you know, you pull rabbits out of the hat."  

We have to remember that DNA is not just a dense medium for data storage, it is potentially hyper-dense.  Each bunny, for example, carries 370 million copies of its instructions, and we're just getting started.  

Dr. Erlick tweeted:

All other known forms of storage have a fixed geometry: a hard drive has to look like a hard drive, a CD like a CD. You can't change the form without losing information.  DNA is currently the only data storage medium that can also exist as a liquid, which allows us to insert it into objects of any shape.

Here is a video of their process:

This is not just playing around.  The authors describe their efforts as a "'DNA-of-things’ (DoT) storage architecture to produce materials with immutable memory."  Drew Endy, a Stanford bioengineering professor, told IEEE Spectrum their work:

...is incredibly interesting from a cultural perspective.  Imagine a societal norm in which every object must encode the instructions for making the object.  Given the incredible information density of DNA data storage, such information could, in some commonplace objects such as refrigerators, also include a fully unabridged guide to rebuilding all of civilization.

Admittedly, the process is currently neither cheap nor easily available.  You need a DNA synthesizer and 3D printer, for example.  Even with the technology, the researchers figure replicating their first bunny cost about $2,500, with most of that cost in the synthesizing.  However, both technologies should radically come down in cost over the next few years.  The researchers hope to make DNA storage an "everyday technology."

We haven't really had time to imagine all the possibilities.  Sriram Kosuri of UCLA  told New Scientist: : "You can imagine a system where everything is tagged with small bits of useful information.  What’s cool about this work is that they show that is doable today, and it seems pretty reliable."  Calin Plesa of the University of Oregon added:  "Any potential application is still likely years away, but this study is certain to inspire creative uses we can’t predict right now,"

The researchers certainly believe that DNA-of-Things (DOT) has big potential.  They describe some possibilities:

DoT could be applied to store electronic health records in medical implants, to hide data in everyday objects (steganography) and to manufacture objects containing their own blueprint. It may also facilitate the development of self-replicating machines.

I'm particularly fascinated by the possible applications to healthcare -- some of which the authors explicitly mention.  Co-author Robert Glass explained that "this technology could be used to mark medications or construction materials...Information about their quality could be stored directly in the medication or material itself. This means medical supervisory authorities could read test results from production quality control directly from the product."

Credit: Shannon May/The Scientist

Similarly, Discover Magazine reports "the research team thinks this technique could be well-suited for even smaller devices, like medical implants. A patient's dental history could be compacted into their tooth filling, for example." 

Professor Erlich has suggested the idea of "DNA-aware homes—faucets that test for harmful pathogens and toilets that report back on the health of their users’ gut microbiome."  

I speculated three years ago about using DNA storage to become our own medical records, and the bunny suggests that the idea is now not so far-fetched. 

Sixty years after its discovery, we're starting to meaningfully interpret and use DNA.  Thirty-five years after its invention we're finding more and more ways to use 3D printing.  But the ETH Zurich/Erich Lab research points to a future that changes how we think of both, as well as our concepts of data storage and perhaps even data itself. 

We're just starting to explore the possibilities of Internet-of-Things, and now DOT comes along to radically expand what IoT can do and how it can do it.  Healthcare is not going to be the only aspect of our lives that is likely to be impacted by DOT, but it is going to be one of them.  

Like bunnies, uses for DOT are only going to multiply.  

Let's Place Some Big Bets

Several articles caught my attention this week.  None was specifically healthcare-related, but each, in their own way, apply.  They all were about challenging our assumptions and gambling on a different course.

Let's start with David Harrison's article in The Wall Street Journal about highways.  Yes, highways.  Most of us have grown up taking the interstate highway system as a given.  Some of us remember parts of it being built, and probably all of us have witnessed portions of it being repaired/expanded.  But too few of us remember how the original construction of many urban stretches wiped out whole neighborhoods. 

As Professor Norman Garrick told Mr. Harrison:

The freeways were put in to divide the black neighborhoods from the white neighborhoods or they were put straight through the center of the black neighborhoods and basically destroyed them.

Mr. Harrison reports how several cities -- such as Rochester (NY), Portland (OR), and Milwaukee -- are trying to reverse this by removing existing highways and reclaiming the land they occupied.  The Milwaukee planning director who oversaw the efforts there claimed:  "We’ve showed that when you take the highway out of the city it gets better. It’s that simple."

Who'd have thought?

The second article was from Laura L. Carstensen, of Stanford's Center on Longevity.  She states simply: "It’s time to get serious about a major redesign of life."  Our education, employment, healthcare, and retirement systems all still act as though we'll only live long enough for, at most, a few years of retirement.  As Professor Carstensen says: "Yet as longevity surged, culture didn’t keep up."

The Stanford Longevity Center has an initiative The New Map of Life that tries to rethink all stages of our lives.  It would require major changes.  "The challenges demand extraordinary social, scientific and educational investments," Professor Carstensen admits.  "The opportunities are even more extraordinary.... The greatest risk of failure is setting the bar too low."

As we often do.

The third and final article is from Sam Walker, also in The Wall Street Journal, on the "dying art of the Big Bet."  He uses the example, not surprisingly, of Elon Musk, with his recent electric truck, which, as Mr. Musk bragged at the truck's unveiling, "Doesn’t look like anything else." 

It's not surprising.  Mr. Musk described his approach to market research: “I do zero market research whatsoever."

Much as Elon Musk is famous for gambling on his instincts, in an era of Big Data, Mr. Walker argues, companies "don’t make bets. Before making operational changes, they run experiments to determine the outcome."  He cities the famous quote from Albert Einstein about solving problems:

Mr. Walker concludes: "Put simply, today’s geniuses study problems. Only suckers make bets." 

Call me a sucker. I'm all for rebuilding neighborhoods by tearing up highways, for redesigning the way we live, and for sometimes throwing out the data in order to place some big bets.  

When you read "highways," think hospitals and nursing homes, and when tearing them down might make the most sense.  When you think about redesigning life, think about Dr. Arthur Kleinman calling for us to change our disease-based healthcare system to an illness-based healthcare system that focuses more on "how to live a life disrupted by a disabling illness."

And when we think about market research and Big Data, think about Henry Ford's (possibly apocryphal) quote: 

Most of our healthcare innovations and reforms take the existing healthcare system as a given and try to build upon it in some way.  They add more on-ramps to the healthcare superhighway, widen its lanes, try to smooth the pavements, maybe even automate our driving on it.  But sometimes we need to tear the highway down.  

Here, in brief, are some big bets I'd like to see someone take on:

The end of medicine: Forget procedures.  Forget drugs.  Forget the practice of medicine as we know it.  Instead, we'd each have an army of nanobots inside us constantly repairing, restoring, revitalizing -- addressing most problems before they manifest and repairing ones that do.

The broader perspective: Most of our medical care is based on human anatomy and human biology, but we've come to realize that we live with a microbiome that may outnumber our cells by 10 to 1.  We can't be healthy without the "right" microbiome, so we need to totally reorient our approaches to medical care to emphasize the health of our totality, not just the "human" portion.  

Redefining healthcare professionals: We have a cornucopia of healthcare professionals.  M.D.s and D.O.s, pharmacists, dentists, nurses, optometrists, podiatrists, chiropractors, and so on.  Specialties beget sub-specialties beget sub-sub-specialties.  They're like the blind men and the elephant, only we're the elephant.  

In the not-too-distant future, though, most expertise will come from A.I. and most manual interventions will come from robots, so we should be thinking about what the uniquely human role in health care is, and how to prepare people for that role.  

Basic needs first: Amid all the debate about MedicareForAll, I want to see someone say: not one more dollar for medical care until every person has enough of the right food, lives in safe housing, has a healthy environment, has meaningful access to appropriate education, and gets the support they need for their daily activities.  

It may mean fewer of those million dollar drugs, more limits on "heroic" efforts to maintain life, and less hospital construction, but when people are starving and/or homeless literally in the shadows of new healthcare buildings, we know our priorities have gotten confused.  

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Most big bets don't pay off.  Most people like to bet on a sure thing, or at least on things that look like they have a good return.  Most people see the future very much like the present, only moreso.  But we're not going to increment our way out of the healthcare mess we find ourselves in.

So, yeah, I'm a sucker for solutions that don't look like existing healthcare solutions.  I'm a sucker for new approaches to old problems.  I'm a sucker for things that look like we borrowed them from the 22th century, rather than iterating them from the 20th.  

Any healthcare gamblers out there?

Healthcare Thanksgiving Blessings

With Thanksgiving just a couple of days away, I thought I'd dedicate this week's post to recognizing some things in healthcare that I'm thankful for.  I'm not saying our healthcare system is a turkey, but, well, you'll see.

I'm thankful for all the smart, caring people who work in healthcare. Not everyone who works in healthcare is either, of course, but, amidst all the craziness of our healthcare system and the stress that health issues can generate, I've almost always encountered some people who are knowledgeable, helpful, and comforting.  That people still go into the field, and stay in it, because they truly want to help is a testament to what we'd like to believe about humans in general and healthcare in particular.

But we make it too hard for them: so many rules, so much pressure, so many competing priorities.  Our first goal should always be to help the patient, but a close second should be to help those who are trying to do just that.

I'm thankful for all healthcare can do.  The changes just in my lifetime have been astonishing.  Organ transplants, bypass surgeries, saving ever-smaller premature babies, new cancer treatments, sophisticated imaging, genetic treatments, laser surgeries, to name a few.

Fanatic Studio / Collection Mix: Subjects RF/Getty Images

It's less clear that we really know what to do with all these.  Many new cancer treatments are hugely expensive yet only yield a few additional months of life, and not necessarily high quality months.  Some of those premature babies have lifelong impairments, and expenses.  There are too many people we keep alive who are not "living" in the sense they'd hope for.  We need to remember: just because we can do something, doesn't mean we always should.

I'm thankful for genetic gifts that gave me the opportunity for good health.  I won the genetic lottery: I like to exercise, and I don't have any chronic conditions.  My life -- and my encounters with the healthcare system -- would be much different if I had health issues that imposed barriers to active living.  However, many go through major portions of their lives worried about their next health crisis or circumscribing their activities due to health reasons.

The healthcare system should not be about simply helping keep people alive, but about helping to improve the quality of those lives.  It should maximize what everyone can do with their lives.  It's easier to treat than to prevent, it's easier to fix than to avoid.  When we allow the healthcare system to be reactive, rather than proactive, we are stealing parts of people's lives.

I'm thankful for not having had major health expenses.  Don't get me wrong; I've had significant health expenses, have a large deductible, and pay a lot in health premiums.  But, fortunately, I've had health insurance that picked up my biggest bills and was able to finance the rest without undue burden.

Not everyone is so lucky.  Too many are crushed by health expenses, whether through a single catastrophic event or a series of ongoing expenses.  Too many have no insurance or inadequate insurance, too many are hit by surprise bills, and too many avoid care due to its costs.   The healthcare system shouldn't be a financial burden on people when they are least able to deal with its financing.

I'm thankful for having more options for getting care and advice.  Hey, I like Dr. Google; I don't believe everything I find, nor can I find everything I hope for, but reducing the information asymmetry with the healthcare system is empowering.  I like having options like retail clinics, urgent care, telehealth, and more outpatient centers.  The increase in these various options over the last 20-30 years has been staggering, and is only beginning.

We're still too office and institutional oriented.  Healthcare should strive to be more like other sectors of our lives: get people as much of what they need where they are and when they want it.  We've improved the availability of options; now we need to make sure that availability is not a false promise.

I'm thankful for exciting new technologies.  As regular readers know, I'm a sucker for robots of all sorts, A.I., and virtual reality.  I'm excited by the options increased processing power and miniaturization are giving us for wearables and the internet-of-things.  I can't wait for A.I. "doctors."

Credit: chombosan/Shutterstock

Healthcare still is having a hard time figuring out how all these fit into its ecosystem -- e.g., who gets paid, how?  Who controls?  What to do with all that data? -- and how health tech should be like other tech, especially in terms of usability and diminishing costs.  The line between "healthcare" and the rest of our lives is going to become very thin.

I'm thankful to be on the cusp of the biological revolution.  It's been 175 years since Pasteur helped solidify the germ theory of disease, and not quite 100 years since we discovered our first antibiotics.  Healthcare has changed radically due to these, and perhaps we got a little too confident that we understood our bodies.

Now we're starting to recognize that we share our bodies -- and our health -- with an extensive microbiome.  We don't really know how to ensure its health to ensure "our" health, but at least we recognize that it is an issue.  Equally exciting, we're starting to think about "programming biology," connecting tech with biology.  All of this is going to mean healthcare in the next few decades will look very different than healthcare does now. 

I'm thankful our healthcare system isn't worse.  I wish I could be more positive about it.  My encounters with it haven't ended too badly, but I've been relatively lucky.  There are way too many people whom our healthcare system fails.  Our morbidity and mortality statistics are at best middling, and, for some sub-populations, third world.  All for the most expensive healthcare system in the world, by far.

Credit: Mengxin Li/The New York Times

Our healthcare system is a conglomeration of many systems that have evolved from a variety of initiatives and decisions.  It wasn't "designed" in any meaningful sense, and it doesn't have a clearly articulated purpose.  We could do worse, but, seriously, we could do a lot better, and we should.

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Wishing you & yours good health and only good encounters with the healthcare system, and hoping for more ideas about how to bring about both.

Towards a New EHR Metaphor

News flash: docs hate Excel!  In a recent study, which included researchers from Yale, the Mayo Clinic, Stanford, and the AMA, physicians rated it only at 57% on a usability rating, far below Google search (93%), Amazon (82%), or even Word (76%). 

But, of course, Excel wasn't their real problem; the study was aimed at electronic health records (EHRs), which physicians rated even lower: 45%, which the study authors graded an "F."  If we want EHRs get better, though, we may need to start with a new metaphor for them.

Credit: Yale News

Lead author Edward Melnick, MD, explained the usability issue: "A Google search is easy.  There’s not a lot of learning or memorization; it’s not very error-prone. Excel, on the other hand, is a super-powerful platform, but you really have to study how to use it. EHRs mimic that."

The study took great pains to include physicians from all specialty disciplines and across a range of EHR platforms, and used the System Usability Scale (SUS) to allow comparisons with other technologies.  Although the overall usability rating was dismal, it did show considerable variation (+/- 22%), such as by specialty (anesthesiologists highest, general surgeons the lowest) or practice location (VA highest, academic medical centers lowest).   

The authors did caution: "survey respondents may conflate their EHR usability with the burdens of documentation due to regulatory, clerical, or administrative requirements or local implementation that manifest in the EHR."  I suspect this is a very valid concern. 

Credit: Medical Economics 2019 EHR Scorecard

The study, of course, is not the first to point out poor physician perceptions of EHRs. For example, Medical Economics' 2019 EHR Scorecard found a 2.8 (out of 5) satisfaction score for physicians' current EHR.  Only 9% rated them a 5, whereas 19% gave a 1. 

Sixty percent would not choose their existing system if they had a choice, which may help account for the alarming fact that three-fourths have personally used 3 or more EHRs.  Seventeen percent have used over 10!

No wonder usability is an issue. 

Almost half of the Medical Economics respondents felt that EHRs have harmed the quality of care they provide, and 60% believed it has harmed patient engagement.  Even though critics claim EHRs focus more on billing than patient care, twice as many physicians said their EHR had a negative impact on their practice's finances. 

I've always wondered why healthcare professionals/institutions didn't seek competitive advantage by computerizing medical records, in the way they did, say, billing, claim submission, and other administrative matters.  Instead, they waited for HITECH to help finance the conversion, and we got stuck with largely legacy systems that have led to the above state of affairs. 

We had a once-in-a-generation opportunity to define what a "patient record" was.  We blew it.  We've poured billions of dollars into EHRs, and -- despite their woeful satisfaction -- few in the healthcare system are going to be eager to scrap all that spending,  But we must. 

We've been using the wrong metaphor. 

Let me explain.  Fast Company featured an excerpt from Cliff Kuang's new book, User Friendly: How the Hidden Rules of Design Are Changing the Way We Live, Work, and Play that might help explain.  Mr. Kuang says, "In the user-friendly world, interfaces make empires," and those interfaces rely on metaphors. 

He cites the example of smartphone and the app economy, which has flourished but which, he believes, is reaching its limit.  He goes on to say:

...the metaphor that begot the app economy was the wrong one. Underlying the structure of all the apps we use is the internet, and its infinite web of connections. But we consume apps through the metaphor of the store, through the assumption of stand-alone goods that we use one at a time, rather than in a web of references.

Resolving them will require a new metaphor for how smartphones work, and when someone finds it, our digital lives will evolve. Imagine if instead of apps, our smartphones were built around the relationships we care about...Who knows how much easier, how much more satisfying, our digital lives might be if the governing metaphor for smartphones were one of human connection, rather than programs.

I think Mr. Kuang's advice can be applied to EHRs.  Who knows, indeed, how much better they'd be if their governing metaphor was one of human connection. 

The metaphor for EHRs was, of course, paper medical records.  Transactional, siloed, for use by professionals, and whose focus on data was mostly as an afterthought.  Those might have sufficed in a paternalistic healthcare environment, populated largely by solo practitioners, most of whom were primary care physicians, but that is not the world we live in today, and that cannot be the metaphor we use. 

Healthcare is a team effort.  Many people have multiple health issues, and are seen by multiple healthcare professionals in several settings.  We know that most of what impacts a person's health happens outside healthcare settings, and that most of their support comes from friends and family.  More people want to be involved in their care, and should be. 

Credit: Microsoft

Maybe what we should be using as the metaphor for EHRs is Slack or Microsoft Teams, with maybe a little Snapchat added in.  Slack and Microsoft Teams recognize that business relies on collaboration, and requires communication and efficient sharing of information.  So does healthcare. 

We need to bring the patient into the metaphor.  We need to build around their stories, their lives.  We need data from their daily lives.  We need to help them coordinate with all the touchpoints healthcare forces them to have.

We need to make EHRs about what is happening in the patient's life, not about what a healthcare professional is doing to them.  We need to turn it into a visual, interactive experience, not one of check boxes and dry measurements.  We need to incorporate visual technologies like photos, videos, VR, AR, and holograms. 

And we need to stop perpetuating EHR monoliths and start developing healthcare's Linux. 

Both Slack and Microsoft Team see healthcare as a growth market, and I'd urge them, and other entrepreneurs: don't think small.  Think about developing a new metaphor for EHRs.  Goodness knows we need one. 

What Would Healthcare Designed By Patients Be Like?

BBC News had an article/video that asked the provocative question: What would a city designed by women be like?  It focused on efforts in Barcelona, led by design group Punt 6, to address existing, if usually unintentional, design biases that favor men over women.  The classic example, of course, are toilets, the design for which usually are focused more on numerical equality that equal availability or on who is more likely to have a stroller/diaper bag. 

A similar article in The Guardian earlier this year focused on Vienna's design efforts for more gender equality.  Civic leaders there realized:

Vienna was being designed by male planners for men like them: going between home and work, by car or public transport, at mostly set times. There was no accounting for unpaid labour such as childcare or shopping, carried out mostly by women, in many short journeys on foot during the day.

I'm mildly interested in urban planning, and certainly support gender mainstreaming, but all this inevitably makes me think of healthcare.   

We certainly do not have a healthcare system designed for women.  Forget toilet disparities; think about mammograms or pelvic exams.  Think about barriers to contraception or to abortion services.  And think especially how women (and men!) tend to have worse outcomes when treated by male physicians, who are, of course, most of our doctors.   

One researcher, looking at heart attack outcomes, described the differences as amounting to "a lass ceiling on life." A colleague of hers concluded: "The penalty for being female is greater."

No, our healthcare system is not designed for women.  Or minorities or low-income families, for that matter.  I'll go further: it's not really designed for patients. 

Abraar Karan, MD, MPH had an interesting essay in BMJ, The dehumanization of the patient.   He quotes famed physician William Osler:

Dr. Karan worries: "We inevitably become accustomed to seeing people when they are sick, in hospital gowns and beds, looking for help," and notes his surprise at seeing one former patient in her street clothes:

 I remember thinking how odd it was seeing her in “normal” clothes, without IVs in her arms, or EKG leads on her chest. Seeing her as just a regular person, walking out into the world like myself, was a confusing feeling. I think that this disorientated reaction is a symptom of a larger problem: what I see as the systematic dehumanisation of the patient.

There is perhaps no better example of not being designed by patients than the hospital gown.  It serves a purpose, but manages to be uncomfortable and unrevealing, as if intended to emphasis how powerless and out of their element people wearing them are.  Dr. Karan asks:

"With all this in mind, I must ask: is there any benefit in dressing patients in a hospital gown? Why should we systematically remove the simple things that make people feel like themselves?"

Why, indeed.

No, ours is not a healthcare system designed by patients. What would a healthcare system designed by patients be like? 

It'd be less expensive, for one thing.  We're spending too much of our income on healthcare expenses.  Patients would never design a system where life-critical drugs like insulin have become unaffordable.  Healthcare is often most expensive for us is often when we're least able to afford it; having an expensive healthcare episode has dramatic adverse impacts on both employment and income, creating a double economic whammy.

It'd be less complicated, for another.  Healthcare professionals, especially physicians, are well-trained and are accustomed to healthcare terminology, which often comes across as meaningless jargon to patients.  People hear it often at times of great stress or distraction, and it's no surprise that over half of patients forget their doctor's instructions.  I've previously called this problem "healthcaresplaing;" it benefits no one and harms too many. 

It'd involve much less waiting and many fewer forms.  Ask people their most common complaints about the healthcare system, and the long waits and endlessly repeated forms would be on everyone's list.  It's as though the healthcare system doesn't value our time and doesn't remember what we've already told it. 

It'd recognize and take advantage of our social connections.  It's oft-stated but still probably true that women make most of the household's healthcare decisions, and our health habits are highly influenced by the health habits of those around us.  Failure to take into account our social situation and supports makes health care much less likely to be effective. 

It'd expect us to be more involved in our health, and in our healthcare decisions.  Let's face it; too many of us have punted on good health habits, and delegated many/most of our healthcare decisions to healthcare professionals.  Our healthcare system has adapted to both of those, but it shouldn't.  We need to do better, and the healthcare system shouldn't just allow those behaviors, but it should enable and encourage them.

It'd start in the community, not in healthcare offices.  Most of what impacts our health is driven by factors other than healthcare services -- our genes, our environment, our socio-economic situation, and other factors.  We need healthier communities and healthier lifestyles long before we need healthcare services. 

It'd ensure patient involvement in all decisions.   How many healthcare conferences are there where there are no patient advocates on the agenda?  How many design meetings happen without patient participation?  How many institutional decisions happen without patients weighing in?  The healthcare system is designed with professional expertise and, all-too-often, fiscal goals in mind, which may end up being good for patients but doesn't ensure it is. 

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I keep in mind Dr. Bon Ku's great observation: "most of us don’t realize that everything in health care is design."  Our current approach has led us to many of the great triumphs healthcare has had, but also to many of the great problems healthcare has created.  

Patients -- people -- aren't (usually) physicians, or architects, or urban planners.  There is expertise that we need in designing a better healthcare system.  But those experts need to recognize that we are the experts in our lives, and be sure our expertise is included in design decisions. 

We can do better.  Take, for example, advice from the esteemed Zayna Khayat: 

When we run design workshops with patients, families, clinicians, administrators, policymakers, we have a "rule" that if we do not agree on something, the patient decides.

That seems like a pretty good rule of thumb. 

We Have Met the Enemy, and It Is...TikTok?

A few months ago I wrote about TikTok: marvelling at its rapid spread, noting how it was China's first big tech success internationally, even speculating on what it could mean for U.S. healthcare.  Now TikTok is back in the news, because -- and I'm not making this up -- experts fear it could be a threat to national security. 

The Treasury Department's Committee on Foreign Investment is investigating TikTok's parent ByteDance.  A Senate Judiciary Committee panel is holding hearings today (at which TikTok declined to appear).  Concerns were initially raised about apparent censorship of Hong Kong protests, but now are broader.  Some sources claim TikTok is sending user data back to China, possibly to the Chinese government. 

Senator Tom Cotton (R-AR) worries that "...the company is beholden to the Chinese Communist Party and will not secure the rights and privacy of its American users," while Senator Chuck Schumer (D-NY) expressed concern "...that apps like TikTok — that store massive amounts of personal data accessible to foreign governments — may pose serious risks to millions of Americans."  

And you thought it was just a platform for goofy videos.  

One former ByteDance manager told The Washington Post: "They want to be a global company, and numbers-wise, they’ve had that success.  But the purse is still in China: The money always comes from there, and the decisions all come from there."  A security expert added: "The leverage the government has over the people who have access to that data, that’s what’s relevant."

TikTok denies that it censors political content, claims that U.S. data is stored "locally," and maintains that it does not send any user data to China, but we're grappling to deal with a tech company having such a U.S. footprint while overseen by another country.  Mark Zuckerberg, whose own company has faced plenty of criticism about its values, said in a speech at Georgetown University:

Until recently, the internet in almost every country outside China has been defined by American platforms with strong free expression values. There’s no guarantee these values will win out.  A decade ago, almost all of the major internet platforms were American. Today, six of the top ten are Chinese.

It would be naive to think that TikTok and its parent company ByteDance aren't collecting user data, and using it to analyze and target users.  What that targeting looks like, or might look like in the future, is less clear, as is whether or not the Chinese government is or will be involved. 

Credit: Internet of Business

But let's be clear: TikTok may be an example of the problem, but it is not the problem.  Natasha Singer wrote a great op-ed in The New York Times: The Government Protects Our Food and Cars. Why Not Our Data?.  She noted:

Why are Americans protected from hazardous laptops, fitness trackers and smartphones — but not when hazardous apps on our devices expose and exploit our personal information?

and:

In fact, the United States is virtually the only developed nation without a comprehensive consumer data protection law and an independent agency to enforce it. Instead, Americans have to rely on the Federal Trade Commission, an overstretched agency with limited powers, to police privacy as a side hustle. The regulatory void has left Americans at the mercy of digital services that have every reason to exploit our personal information and little incentive to safeguard it.

Whatever we're afraid China might do with our TikTok data, other entities -- including actors for foreign countries -- are already doing with our Facebook, Google, or Twitter data. 

As I'd expressed in my previous TikTok article, U.S. healthcare should be worried about China's ambitions in healthcare.  Very worried.  Bloomberg says, "Pressured by its growing middle class, the Chinese government has set itself an ambitious target: first-world health outcomes at a fraction of the cost that other countries, especially the U.S., pays." 

Ping an Good Doctor "one minute" AI clinic

China is, in particular, planning to use A.I. in healthcare.  As China news site Sixth Tone put it, "Chinese healthcare is betting big on AI.  China Daily reports AI Reshaping healthcare system.  In a recent paper about China's healthcare system, the authors boldly predict: "artificial intelligence will overturn the existing medical model. Artificial intelligence technology will transform the medical sector and trigger an estimated $147 billion market during the next 20 years." 

People like Eric Topol, MD, are urging that the U.S. and China collaborate on bringing AI to healthcare.  "Chinese academics and companies already have unfettered access to personal health data," Dr. Topol and Kai-Fu Li, PhD write. "To compete in AI health, U.S. companies will need access to clinical data on a similar scale. How will that be possible if the current isolationist policy continues?"

And we're back to data.  Did I mention that ByteDance sees itself as an AI company? 

Unlike the U.S., China has a strategy on AI  and on healthcare (not to mention (and quantum computing and 5G).  They're acting like it really is the 21st century, while we're still debating things like whether Facebook should run false political ads.  Right now China's healthcare ambitions may be limited to China, but TikTok's success should be fair warning that at some point they are going to want to export them. 

We still believe healthcare respects borders - not just national, but also state and local.  We still allow data to be siloed, yet also to be shared for purposes that primarily benefit people other than whose data it is.  We still think our hugely expensive, highly dysfunctional healthcare system is the envy of the world. 

None of that is going to survive the oncoming tsunami of healthcare innovations from abroad. 

So worry about TikTok all you want, but it's what comes next that we should be worrying about.  Even in healthcare.