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.

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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.