Tuesday, May 21, 2019

The Health Tech Our Toddlers Should Never Know

Joanna Stern wrote a fun article for The Wall Street Journal: "The Tech My Toddler Will Never Know: Six Gadgets Headed for the Graveyard."  She selects gadgets she predicts going to be outdated as soon as 2030, making them as unfamiliar then as DVDs and VHS tapes are now to her two-year-old.

I'll touch upon her list shortly, but my immediate thought was about health tech's equivalent list.  There certainly is a lot of health tech that should be headed to the graveyard, but, knowing healthcare's propensity to hang on to its technology way too long, I had to modify her more optimistic headline to say "should" instead of "will." 

One can always hope. 

Here's Ms. Stern's list:

  1. Cords and ports: "Our homes, cars and offices will have all the wireless chargers integrated," Sanjay Gupta of the AirFuel Alliance told her.
  2. Credit cards and keys: She points to efforts like Amazon Go, where sensors, camera, and AI keep track of what you are doing and make these unnecessary.
  3. Oversized smartphones: "The private displays of the future will be in glasses and contacts; public displays in the physical world will be on most surfaces," Alan Kay predicts.
  4. Dedicated cameras: "In a decade, using a dedicated camera will seem as quaint as placing a needle on a record," says Ms. Stern, with ubiquitous embedded cameras rendering them outdated.
  5. Living room boxes: "Instead of a dedicated box with a DVD drive and lots of graphics horsepower, the games and the computing power will live in the cloud," she believes..
  6. Smart speakers: As Ms. Sterns sees it, "Microphones, speakers and voice assistants will live all around us—in our kitchen appliances, car dashboards, computers, glasses, showers and more."
Pretty cool list, and hard to argue with.  So, in return, here's my healthcare tech list (not all of which are gadgets per se):

1.  Faxes:  You knew it had to be at the top of the list.  Anyone under thirty who knows how to work a fax machine probably works in healthcare.  The reason faxes persist is because they supposedly offer some security advantages, but one suspects inertia plays at least a big a role.

There are other options that can be equally "secure," while making the information digital.  CMS Director Seema Verma has called to make doctors' offices "a fax-free zone by 2020."  That doesn't appear to be happening, but 2030 seems like a realistic goal.

2.  Phone Trees:  We've all had to call healthcare organizations -- doctors' offices, testing facility, health plans, etc.  Most times, you first have to navigate a series of prompts to help specify why you are calling, presumably to get you closer to the right person.  There are probably studies that show it saves money for the companies that use them, and perhaps some that even claim its saves customers time, but this is not a technology most people like.

I don't want to have to figure out how to navigate the phone tree.   Honestly, I don't want to make those mundane, administrative phone calls -- which healthcare seems to be full of -- at all.  By 2030 I want my AI -- Alexa, Siri, etc. -- to deal directly with the companies' AI to spare me from phone trees. 

3.  Multiple health records: I have at least five distinct health records that I know of, only two of which communicate to the other at all.  For people with more doctors and/or more complex health issues, I'm sure the situation is even worse.

EHRs are old technology, the cable of healthcare.  They're oriented around the people delivering care, and around what happens in the office/facility, rather than the person whose health they are supposed to be tracking or where most of that health happens.  The technology exists to collect a broad range of health data for each of us, on an ongoing basis, make sense of it fo us, and communicate it as appropriate to the healthcare professionals who need it.  By 2030, we should each have a single health record that reflects the broad range of our health.

4.  Stethoscopes:   You've seen them. Your doctor probably has one.  Find the oldest photographs of doctors that exist and you might find them with stethoscopes; they are that old.

"It’s a relic. It’s rubber tubes,” Dr. Eric Topol said about stethoscopes.  "It has very little utility compared to how it continues to be so highly revered.” It's not that they are useless, but as it is that there are better alternatives, such as handheld ultrasounds or even smartphone apps.  For Pete's sake, people are working on real-life tricorders.   By 2030, seriously, can we be using its 21st century alternatives?  

5.  Endoscopes: Perhaps you've had a colonoscopy or other endoscopic procedure; not much fun, right?  We do a lot of them, they cost a lot of money (at least, in the U.S.), and they involve some impressive technology, but they're outdated.

By 2030, we should be using things like ingestible pill cameras, with ingestible robots to take any needed samples or even conduct any microsurgery.  These are technologies that exist, should get both better and cheaper, and would certainly make patients' lives easier.

6.  Chemotherapy: Chemotherapy is literally a lifesaver for many cancer patients, and a life-extender for many others.  We're constantly getting new breakthroughs in it, allowing more remissions or more months of life.  But it can pose a terrible burden -- physically, emotionally, and financially -- on the people getting it.  The side effects can be painful at best and devastating at worst,.

Chemotherapy has been likened to carpet bombing, with significant collateral damage.  Increasingly, there are alternatives that are more like "smart bombing" -- precision strikes that target only cancer cells, either killing or inhibiting them.  With targeted therapies, perhaps delivered by nanobots, we can have much less drastic adverse impacts.  By 2030, perhaps cancer patients won't fear the treatments almost as much as the cancer.
Nanobots fighting cancer.  Credit: Healthline
Healthcare certainly has no shortage of technology that we should hope today's toddlers will never have to use or experience.  The above are just six suggestions, and you may have your own examples.  We can make these happen, by 2030; the question is, will we?

Tuesday, May 14, 2019

I Am Not a Transaction

I filled a prescription today at the drugstore; my receipt -- for that one item, paid in cash -- was five feet long.  I know; I measured it.  You can probably guess what chain that drugstore was part of.  This issue has been covered extensively before, such as Rachel Sugar's Vox investigation last fall.

Now, I know that, in this case, there are digital options, and that the company claims they cut the length of their receipts by up to 25% years ago, but, honestly, if this was the only issue, I'd just keep throwing them away (after letting my wife peruse the coupons, of course).  The trouble is, I also know from experience that I'm going to get a 4-6 page explanation of benefits (EOB) from my health plan just for this prescription. 

It's not the wasted paper, it's not even the volume in itself.  It's how healthcare organizations keep treating me not as a person, not even as a patient, but as a transaction. 
Credit: Lauren Giordano/The Atlantic
In the drugstore case, the receipt is less about explaining the transaction I just had with them and more about enticing me to buy more from them, with coupons galore (no matter that they're really targeted at my wife, not me, nor that they often are for products we never buy).  In the EOB case, well, I worked for health plans for many years yet still usually struggle to understand what they've covered and why. 

Annotated hospital bill
Credit: Patrick Slawinski, US News & World Report
Similarly, my bills from my other healthcare professionals are more focused on ensuring my account with them is fully paid up than in explaining why they are billing me what they are.  It takes some detective work using the EOB and their bills to form a hypothesis about why I'm supposed to be paying what I'm being asked to. 

Many in the healthcare system assert that EHRs are not more user-friendly because they were built more to facilitate billing than to support clinical work.  I can't attest to that, but it would surprise me if it wasn't true, because almost everything in our healthcare system revolves around billing. 

I.e., is our universe of diagnostic and procedure codes expanding as rapidly as it is because we need that level of precision to understand our health, or to ensure that the people coding them can squeeze every possible dollar from whomever is paying?  Why do hospitals still use chargemasters that rarely are anywhere near the actual cost or negotiated prices?  Why did so many healthcare professionals and organizations need federal incentives to acquire EHRs, but not to move to electronic billing or scheduling systems (which most did decades ago)? 

It's all about the transactions. 

There probably are examples of things happening with our health that can be considered a transaction, a one-and-done event that has no relation to any other health issues -- past, present, or future.  But I suspect that is rare.  Our health is holistic, a function of everything that is happening, has happened, or will happen to us.  When it comes to our health, transactions are part of the story, but they aren't the story. 

You just can't tell that from most of the communications we receive about our encounters with the healthcare system.  Too often, they are about the money: how much who is going to get paid by whom.

We should be doing better.  Each touch with a person using the healthcare system is an opportunity to educate, to explain, to try to make things simpler.  Bills, receipts, EOBs can and should be part of that.  If a healthcare organization gets negative feedback about those kinds of transaction-driven touches -- as most probably do -- then maybe it's time for them to stop thinking so much about what that organization will get from that transaction and more about what that person is going through that caused the transaction.

I was excited to read a Fast Company article about receipts getting an extreme makeover.  Susie Lu, a Netflix senior data visualization designer, put her skills to use:
I was compelled to think of ways that data visualization could be used to redesign everyday experiences.  Of the use cases I had brainstormed, the receipt was the idea I was most excited to play with first.
Credit: Susie Lu
Her redesign updates receipts by showing a bubble chart at the top categorizing spending, following by the standard itemizing, but with each item accompanied by a bar indicating how expensive it was relative to other items in the same category. 

Ms. Lu was operating under several constraints.  She used a low-resolution thermal printer, the kind used in most retail stores.  As Fast Company noted, the printer couldn't even draw horizontal lines, hampering the images it could be coaxed into producing, and the receipt paper doesn't allow for great resolution. 

Despite those constraints, Fast Company raves:
But the final result is fantastic. It’s clear, helpful, and a bit quirky–a perfect trio that would make it a valuable design for any big grocer trying to humanize its customer service a bit
For "big grocer," substitute "healthcare organization."  Think of what my drugstore receipt, with its five feet of available paper, could have shown me.  Think about what Ms. Lu could have done under fewer constraints.

Ms. Lu didn't start with healthcare in her attempt to redesign everyday experiences, but I wish she would have.  More to the point, I wish others would.  As she has demonstrated, data visualization is sorely underused in everyday experiences, and, as I've previously discussed, perhaps nowhere is it as badly needed as in healthcare.  Healthcare is confusing, full of data, and all-too-often designed around the people providing the care than the people receiving it.  It needs all the data visualization it can get.

Design in healthcare has gotten much more attention in recent years, such as from Dr. Joyce Lee, Dr. Bon Ku, or Stacey Chang.  Indeed, Dr. Ku's great quote is: "Everything in healthcare is design."   Design isn't about making things prettier -- well, it's not just about that -- but about making things easier to use and easier to understand. 

Even receipts.

When designing anything for healthcare, we should start with this: healthcare may be full of transactions, but we are not those transactions, and they shouldn't define us or our interactions with the healthcare system. 

Tuesday, May 7, 2019

Can I Have My Time Back?

If life is, as William James suggested, what you pay attention to, then healthcare takes up too much of our lives. 

Health, of course, is supposed to be an integral part of our lives, but seeking and/or receiving health care is not supposed to be.  Our healthcare -- a.k.a., medical care -- system is becoming too much of a focus of our lives.   
Credit: Cloudpixel
Think about just the time we spend that revolves around healthcare:

  • we wait to get an appointment with a healthcare professional;
  • we wait at the healthcare professional's office/facility;
  • our actual time with the healthcare professional is usually shorter than we'd like, and we often feel he/she is too distracted (by their EHR and/or time constraints);
  • if the healthcare professional orders a prescription, a test/procedure, or a follow-up visit (and he/she probably will do at least one of those things), we then have to wait to arrange those, and wait there all over again;
  • if we get a test, we have to wait to get the results, often until the healthcare professional has reviewed; 
  • we wait in between visits, often not quite sure if what we're feeling is to be expected or when we should take what action other than to go on waiting;
  • we wait for our healthcare professional to bill us for their services, and for our health plan to decide how much we actually have to pay;
  • if we happened to be hospitalized or in a nursing home, our time is all about waiting, never quite sure when what is going to happen to us.
Once you have a encounter with the healthcare system, you're probably going to have another.  Once you have an encounter, you're probably going to get a prescription, and, at some point, at least a test.  Once you get a test, you're likely to need more tests.  Do enough tests and something will be found, leading perhaps to more invasive action. 

Healthcare becomes self-perpetuating. 

And, of course, many of us spend way too much time worrying about how we're going to afford to pay for health care we've already received, or worrying about how we would pay for it should something "major" happen to us. 

We want to spend our lives doing things that are important to us.  We want to spend time doing things that make us happy or that help the people we care about be happy.  We begrudge spending time on anything else. 

To be sure, we spend time on many things we don't especially enjoy -- we go to work, we exercise, we go to the grocery store, etc. -- but they are in furtherance of the things that matter.  Getting healthcare falls into that category.  But some people enjoy working, some people like exercising, and some people enjoy going to the grocery, but I doubt many people enjoy getting healthcare. 

We may enjoy the outcomes of healthcare -- hopefully, feeling better -- but we rarely enjoy the process of healthcare.  That's why that process should take as little time away from the rest of tour lives as possible.   

If I like Avengers movies, I'm delighted when I find that Avenger's Endgame is three hours instead of two; that's extra time I get to enjoy it.  Same for overtime games in sports.  But I don't feel that way when, say, meetings run long, and I definitely don't feel that way when I have to wait in the healthcare system.  Of my limited time, that's not how I want to spend any extra minutes. 

Healthcare needs to respect our time more.  Healthcare needs to make us feel like our time is more valuable than the time of the people working in it.  Healthcare needs to make us feel like it is ready for us, when we need it, not like it is somehow doing us a favor and it will get to us when it can. 

Just recently, Tesla announced that it was going to keep track of certain components for its cars in real-time, let you know when it was time to replace them, and ship the replacement parts to the closest service center.  "Like skipping the doctor and going right to the pharmacy," Tesla says.

Except, of course, healthcare doesn't do anything like that.  Not yet.

NEJM Catalyst featured a talk by Judith Baumhauer of the University of Rochester Medical Center about the importance of using patient-reported outcomes to "predict the future."  It uses such information to help patients understand how they might benefit, and how they might expect to progress, from different courses of treatment.  "We needed for our patients to tell us how they’re doing,” Professor Baumhauer said. “We didn’t like telling them how they’re doing. We like them telling us.”

Figuring out how to identify which patients would benefit from which treatments "...is the holy grail of health care,” Professor Baumhauer believes. “We’re going to do preventative actions to improve the health care that we provide for patients.”

Don't waste our time collecting information that won't be used to help our care.  Don't waste our time with treatments that won't help us.  Don't waste our time fixing problems that could and should have been prevented.  Don't waste our time, period. 

Give us more time to spend on our health, and less on our health care.  Give us more time living our lives, and less dealing with the healthcare system.  And, when we do have to interact with the healthcare system, treat our time as precious, just like our health.

The hot phrase in healthcare for the past several years has been "patient-centered."  The idea is well-intentioned, but misses the larger point.  We don't want to be patients.  We don't want to spend time being in the healthcare system.  We're people, and the goal of the healthcare system has to be maximizing the time in, and quality of, our lives outside it.

It's bad enough that healthcare has so much of our money, but it's even worse that it takes so much of our time. 

Monday, April 29, 2019

Putting Healthcare on a Platform

People in healthcare have been speculating for years about who or what will be the "Uber of healthcare."  Uber shocked the transportation industry with its peer-to-peer business model, slick technologies, and almost blithe disregard for numerous regulations that might have dampened its model.  Certainly, many thought, the creaky, inefficient healthcare system was vulnerable to disruption from a similar outsider, perhaps even Uber itself (UberHealth, after all).

So I found it amusing that it turns out that Uber has aspirations itself; it wants to Amazon. 
Credit: The Street
Uber is doing its road show in preparation for its IPO next month, which is expected to raise as much as $91b.  The New York Times quotes CEO Dara Khosrowshahi in an Recode interview last year as saying: "We want to kind of be the Amazon for transportation."  In another interview last summer, he elaborated on this goal:
Cars are to us what books were to Amazon.  Just like Amazon was able to build this extraordinary infrastructure on the back of books and go into additional categories, you are going to see the same from Uber.
Uber Eats is touted as an example of this kind of opportunity, and Uber hopes that Uber Freight will have similar success.  The Times also cited their efforts in scooters, autonomous vehicles, and payment infrastructure as other opportunities. 

Shawn Carolan of Menlo Ventures told the Times: "Because the ubiquitous need for transportation is so huge, they’re able to cross-sell different products to their existing customer base."  Another VC, Mitchel Green of Lead Edge Capital, was also effusive: "Uber, like Amazon, operates with an obsession on customer value over anything else."

Of course, cynics suspect the Amazon comparisons are an attempt at a financial sleight of hand.  Uber's growth is impressive, but shows signs of slowing, while its losses are mounting -- as much as $1b in the first quarter alone.  Amazon was famously unprofitable for many years, as it invested in growth and infrastructure (such as its cloud service AWS), and Uber would like investors to show similar patience.  

Leading tech companies -- not just Amazon but also Alphabet, Apple, and Facebook -- have established themselves as platforms for a range of products and services, which allows them to build success upon success and further entrenching themselves into customers' lives.  Business platforms create value through network effects, connecting two groups of users -- consumers and suppliers, consumers with other consumers, businesses with other businesses, etc.  
Credit: Applico
Uber is already a platform connecting riders and drivers, and it is a platform that can expand by doing more things for riders with more kinds of transportation optionsThe thing I keep wondering about is: where are healthcare's platforms?

Healthcare, especially in the U.S., is known for how complicated (and expensive) it is.  People -- patients/consumers -- have a hard time finding the right treatments, the right health care professionals and organizations, and the right price.  Even communication is difficult in healthcare; faxes are preferred over emails and texts, waiting in line or in a phone tree can be maddening, and terminology is too often opaque, such as on bills or insurance "explanation of benefits." 

Healthcare needs platforms. 

Some are calling for "Medicare For All" -- whatever that means.  Others might prefer, say, Kaiser Permanente for All, or Mayo Clinic for All.  But those aren't platforms, and they wouldn't address many of healthcare's underlying problems. 

Credit: Symphony Corp.
Done right, electronic health records could be -- or could have been -- a platform.  Expand the kinds and sources of information collected, make them more useful to consumers in their daily lives, introduce more interfaces (e.g., telehealth), and they'd start to look like a viable platform.  Unfortunately, neither healthcare professionals nor patients are enamoured of the current EHRs, which have often been seen as being more about billing and more about intra-organization than about a broader perspective of our health. 

Apple is certainly thinking about life as a healthcare platform.  Its Apple Watch is already has an ECG app that can be used to detect Afib, and it is working with a growing number of health organizations that support sharing health records on the iPhone.  Earlier this year CEO Tim Cook said: "if you zoom out into the future, and you look back, and you ask the question, 'What was Apple's greatest contribution to mankind,' it will be about health."

Similarly, Amazon seems to have plenty of healthcare ambitions, including its acquisition of PillPack and Haven, its joint venture with JP Morgan Chase and Berkshire Hathaway, to name two of many.  Alphabet has an array of healthcare-related efforts and investments, and Facebook is exploring the space.  

There are going to be platforms in healthcare.  The question is whether they will come from outside healthcare, or from within.  

In additions to EHRs, telehealth companies could be a logical basis for a platform, connecting patients and healthcare professionals in a variety of ways and a number of business models.  There are services like ZocDoc (patients and doctors) or PatientsLikeMe (patients and patients) that have platform potential.  But, so far, they are all mostly staying in their lanes.  

What remains to be seen is:

  • who has the technology to really simplify healthcare?
  • who offers the experience that wows users?
  • who can quickly generate the kind of network effects that serve to accelerate growth?
Right now, it's not clear that any organization -- in or out of healthcare -- can yet demonstrate clear superiority in those dimensions.  

Healthcare wants to be more like Uber.  Uber wants to be more like Amazon.  Amazon wants to be part of healthcare.  Someone, somewhere, sometime will somehow break that circle and healthcare will have the platform(s) it needs.  

We're waiting.  

Monday, April 22, 2019

Robots Need DNA too

DNA, it seems, never ceases to amaze.  It's not enough that it powers all known forms of life on our planet, in all types of organisms, under a dizzying array of conditions.  It's not enough that we're slowly but steadily cracking the code to find out what it is doing, and even starting to purposely modify it.  Heck, it's not even enough that we're figuring out how to store other information in it, and even to use it for computing.

Now scientists are using it to create new kinds of "lifelike" mechanisms.   Pandora, we may have found your box.
DASH-created "lifelike" material.  Credit: John Munson/Cornell University
Researchers from Cornell recently reported on their advances.  They used something called DASH -- DNA-based Assembly and Synthesis of Hierarchical -- to create "a DNA material with capabilities of metabolism, in addition to self-assembly and organization – three key traits of life."

Professor Dan Luo, one of the researchers, said:
We are introducing a brand-new, lifelike material concept powered by its very own artificial metabolism. We are not making something that’s alive, but we are creating materials that are much more lifelike than have ever been seen before.
 In the following video, Professor Luo explained that "what we are trying to do is make materials live."

That sends chills up my spine, and not necessarily in a good way. 

Lead author Shogo Hamada elaborated:
The designs are still primitive, but they showed a new route to create dynamic machines from biomolecules. We are at a first step of building lifelike robots by artificial metabolism.  Even from a simple design, we were able to create sophisticated behaviors like racing. Artificial metabolism could open a new frontier in robotics.
The reference to racing in his quote refers to the fact their their mechanisms were capable to motion -- likened to how slime mold moves -- and they literally had their "lifelike materials" racing each other.  If I'm reading the research paper correctly, the mechanisms were even capable of hindering their competitor: "the faster moving body could affect and alter the state of another track to Decay, thus slowing down the locomotion of the body at the other track by triggering the degeneration."

Well, that's lifelike, all right.
Credit: Hamada, et. alia, Science Robotics
It wasn't all days at the race track; oh-by-the-way, they also demonstrated its potential for pathogen detection, which sounds like it could prove pretty useful.

These mechanisms eat, grow, move, replicate, evolve,and die.  Dr. Luo says: "More excitingly, the use of DNA gives the whole system a self-evolutionary possibility.  That is huge."  Dr. Hamada adds: "Ultimately, the system may lead to lifelike self-reproducing machines."

Those chills are back.

The paper concluded with several potential uses for their work:
  • "It is not difficult to envision that the material could be integrated as a locomotive element in biomolecular machines and robots (29, 4150). 
  • The DASH patterns could be easily recognized by naked eyes or smartphones, which may lead to better detection technologies that are more feasible in point-of-care settings. 
  • DASH may also be used as a template for other materials, for example, to create dynamic waves of protein expression or nanoparticle assemblies. 
  • In addition, we envision that further expansion of artificial metabolism may be used for self-sustaining structural components (51) and self-adapting substrates for chemical production pathways."
It's just beginning.

There has been a lot of attention on engineering advances that will allow for nanobots, including uses with our bodies and so-called "soft robots," but we should be given equal attention to what is called synthetic biology.

Credit: The Scientist
Synthetic biology isn't necessarily or even predominately about creating new kinds of biology, as the researchers at Cornell are doing, but reprogramming existing forms of life. They're being programmed to eat CO2 (thus helping with global warming), help with recycling, get rid of toxic wastes, even make medicines

A Columbia researcher believes that new techniques for programming bacteria, for example, "will help us personalize medical treatments by creating a patient’s cancer in a dish, and rapidly identify the best therapy for the specific individual."

In the not-too-distant future, we're going to be programming lifeforms and "lifelike materials" t do our bidding at the molecular or cellular level.  People have speculated on swarms of nanobots patrolling our bodies to ensure our health, but that may be a too mechanistic view of the future.  Those nanobots may be less engineering marvels than biological ones, and their programming may recreate the evolution versus intelligent design debate.  

Humans once thought our species was unique, until evolution taught us that we are related to all the others.  We then thought that surely our genome was certainly bigger and more "complex" than those of other species, until we discovered that neither is really true.  More recently, we've realized that "we" aren't even uniquely human; in addition to our DNA containing DNA from extinct types of humans, most of the genes in and on our bodies come from our microbiota.  

We've been debating and worrying about when A.I. might become truly intelligent, even self-aware, but the Cornell research is giving us something equally profound to debate: how to draw the line between "life" and "things"?

Medicine, healthcare, and health are going to have to develop more 21st century versions.  What we've been doing will look like brute force, human-centric approaches.  Synthetic biology and molecular engineering open up new and exciting possibilities, and some of those possibilities will upend the status quo in healthcare in ways we can barely even imagine now.  

It's not going to be enough to think of new approaches.  We're going to have to find new ways to even think about those new approaches.  
In the meantime, let's go watch some DASH dashes!

Tuesday, April 16, 2019

Healthcare's Black Holes

If you are anything like me, you were transfixed by last week's first-ever photographs of an actual black hole.  If you somehow missed the coverage, I urge you to take time to read about it, such as here or here.  And if this accomplishment holds no interest for you, then you're probably not going to be interested in this article either, although it is about healthcare's metaphorical black holes rather than honest-to-goodness black holes.
Credit: Event Horizon Telescope Collaboration, via National Science Foundation
Black holes were an unintended consequence of Einstein's General Theory of Relativity.  He published it in 1916, and soon after that one sharp reader -- Karl Schwarzschild -- found that its equations called for areas of space in which gravity was so strong that not even light could escape.  Most experts (including Einstein) scoffed, treated them as mere mathematical curiosities.  It wasn't until the 1960's that people started taking them seriously (or that they acquired that catchy name).

They've been featured in numerous science fiction movies/television shows, along with some very plausible simulated images.  The breakthrough last week was an actual image (shown above).  It took collaboration between over 200 scientists working at eight radio observatories on six mountains on four continents, along with two years of data analysis.

Here's a video featuring Katie Bouman, who has become the face of the effort:

The black hole is 55 million light years away; in case you don't know, a light year is, well, very, very far away.  Some have complained that the picture is blurry, but it has been analogized to reading a text in New York from Paris, or counting the dimples on a golf ball in Los Angeles from New York.  As one of the lead scientists told The New York Times,  "It’s astonishing to think humans can turn the Earth into a telescope and see a black hole."

Astonishing indeed.  Meanwhile, one of my Twitter buddies Megan Janus (@Megan_Janus) praised this monumental effort in collaboration and challenged: "Imagine what we could do for healthcare with true interoperability!"

That got me thinking about "black holes" in healthcare.  Here's a short list:

Data silos: Until fairly recently, most of our healthcare data was locked away in paper records, only laboriously compiled into more aggregate collections that could be analyzed.  Now we have no shortage of digital health data and bravely talk about the power of Big Data, but true interoperability remains a goal.

If you happen to receive care within a health system, or sometimes between health systems that use the same EHR platform, the odds of your data following you are much higher now than ever, but otherwise, probably not.  It is widely agreed this is a problem, many are working on it, we know ways we could address it, but if your life depended on it -- and it might -- don't count on it anytime soon.

Data goes in, but, all-too-often, it doesn't come out.
Credit: Flying Blind
Data: There are some kinds of health data -- like weight or blood pressure -- that have been tracked since the advent of modern medicine.  We've been adding to the list as we've developed new things to measure and new ways to measure them.  Now we're in the early stages of a torrent of new data, especially from smart devices, including fitness trackers and medical implants.

This seems like a good thing, but not necessarily.  We don't really know which data is important, when, for whom.  We don't know who should be looking at all this data, how or when.  In many cases, even if the data helps us recognize there is an issue, we don't necessarily know what to do about it.  Even worse, not only do you not control yours, you don't even know what is being done with it.

The data might as well be in a black hole.

Decisions: As we creep closer to using A.I. for diagnosis/treatment decisions, many worry that the A.I. might use "black box" logic that will preclude us from understanding why it makes those decisions.  But, as others point out, we already have that problem; it's just that the black box reasoning takes place within physicians' heads.

Medical decisions vary due to  dizzying array of circumstances -- such as where physicians went to medical school, where they did their residency, whom they practice with, how and by whom they are paid, what research they happen to have read/remember, how many similar cases they've seen or done.  They might offer an explanation for their decision, but it's anyone's guess whether that explanation is the truth or a rationalization of other influences, which they may or may not be aware of.

The decision process may be like a black box than a black hole, but, either way, we don't know what happens inside.

Medical care: The scary thing about black holes is that their gravity inexorably drags in everything within its reach.  Unless you are very far away or have sufficient escape velocity, you will get pulled in, and, once you are sucked in, you are never getting out.

We call it our "healthcare" system, but usually what we mean is medical care.  It treats illnesses, it puts us under the care of medical professionals, it turns us into patients.  A doctor's visit begats prescriptions, and perhaps some testing.  Testing leads to procedures.  Procedures lead to hospital stays.  Hospital stays lead to....you get the idea.

What we might once have thought of as "health" -- or never thought about at all -- becomes "health care," a.k.a. medical care.  And once you transform from a person, whose health belongs to you, to a patient, your health is never quite your own again.   You've been sucked into the medical care black hole.

And, chances are, you're never getting out.


There's not much we can do about real black holes.  They may (or may not) preserve information, they may (or may not) create wormholes, and they may (or may not) eventually evaporate.  But the above examples of healthcare's black holes are ones that we've created, and they're ones we can do something about.  We can escape them, we can get the information in them out, and we can reverse their effects.

If some humans can figure out how to take a picture of a real black hole, certainly other humans can fix healthcare's black holes.

Wednesday, April 10, 2019

Get Used to Fun(gal) Company

Like many people, I have become more aware in recent years of the microbiome and its impact on our health, but I'd been unaware of the mycobiome, its fungal subset.  That changed when I read an in-depth story in The New York Times on a drug resistant fungus named Candida auris.

It reported on a man who recently died in a U.S. hospital from it, and here's the scariest part of the story:
"Everything was positive — the walls, the bed, the doors, the curtains, the phones, the sink, the whiteboard, the poles, the pump,” said Dr. Scott Lorin, the hospital’s president. “The mattress, the bed rails, the canister holes, the window shades, the ceiling, everything in the room was positive."
The story went on to explain: "Over the last five years, it has hit a neonatal unit in Venezuela, swept through a hospital in Spain, forced a prestigious British medical center to shut down its intensive care unit, and taken root in India, Pakistan and South Africa."   Dr. Tom Chiller, who heads C.D.C.'s fungal branch (who knew!) said: "It is a creature from the black lagoon.  It bubbled up and now it is everywhere."
Spread of Candida auris.  Credit: The New York Times. Image from Kazuo Satoh et al., Microbiology and Immunology
Some would argue that, as bad as it sounds, your chances of contracting Candida auris is actually very small, but my feeling is: ignore the mycobiome at your own risk.

If you're squeamish, the situation is worse.  A separate Times story points out that "you're covered in fungi," with fungi present both on the inside and the outside.  There's fungi at the bottom of the ocean, there's fungi at the top of mountains, and there's fungi in Antarctica.  One biologist says they are "on every grain of sand, in every gram of soil from the Arctic to the tropics." 

If all that makes you consider fleeing the Earth to escape it, a new study  has found that even the International Space Station is full of both bacteria and fungi.  The bacteria populations tend to ebb and flow, while the fungal communities are more stable over time.  

Stubborn little life forms, aren't they?  

Batrachochytrium dendrobatidis.  Credit: CSIRO
As Candida auris illustrates, fungi can be killers.  Science reports that a fungus named Batrachochytrium dendrobatidis (Bd) "has wiped out more species than any other disease," causing 91 species to go extinct and another 491 species to decline, especially among frogs.   That's why fungi like Candida auris that are resistant to current antifungals are scary.  We've started to recognize the problem of drug resistant bacteria, but, as a recent research paper declared: "Worldwide emergence of resistance to antifungal drugs challenges human health and food security."

Well, then, the solution is clear, right?  Find more of those antifungals and kill them all, right?  Not so fast.  As we've started to learn about the microbiome, the "right" mycobiome is essential to our health.  Fungi have been connected with, among others, Crohn's disease, ulcerative colitis, hepatitis B, asthma, prostate cancer, obesity, and graft versus host disease (GVHD).  We don't know when the problem is too much of them, too little, or too many of the "wrong" kind.  

And, yet, we're only starting to pay attention.  A 2016 report found that "only 269 of more than 6,000 Web of Science search results for the term “microbiome” even mention “fungus,” and the scientific search engine returns only 55 papers pertaining to the “mycobiome.”'   Studies about the microbiome generally are still a small minority of all medical research papers, and studies about the mycobiome are a tiny minority of that minority.

The author urged:
The scientific community must adopt an all-inclusive characterization of the human microbiome going forward; studies that focus solely on bacteria are myopic and doomed to failure, and they squander precious research funds.
We are literally swimming in our mycobiome, and having it swim within us, but we are just barely beginning to understand its importance.   "Myopic and doomed to failure" is an apt description of our current focuses.
Credit: Ghannoum and Tang, The Scientist
One expert, Dr. J. Curtis Nickel of Queen's College (Canada), told the Times:
I personally suspect that it’s an interaction of all the different bacteria, fungi and viruses.  An unhealthy population of these organisms exacerbates disease and perhaps even — this is the next step — causes it. But boy, we’re not there yet."
Boy, we are not. 

We tend to view healthcare as a fight.  We declare war on diseases.  We battle our maladies.  We have antibiotics, antivirals, and antifungals.  We beat illnesses.  Dying is a loss.  It all makes for a very colorful metaphor, and positions our clinicians and healthcare organizations as noble warriors, but it is a flawed metaphor.

Our health is not "our."  We think of ourselves as this collection of cells that share the same DNA, but it's not that simple.  Few of us live in a bubble; "we" includes the many other organisms that accumulate, starting at birth and continuing throughout our lives.  We can't avoid them, nor have we evolved to ignore them.  Our health lies in our co-existence with them -- whatever that means.

The problem is that, for the most part, we don't know what that means.

Brute force approaches like antibiotics have, no doubt, saved countless lives, but at an untold cost.  We're only starting to understand how these "anti" efforts have altered our microbiome and mycobiome, for how long, and to what effect.  We have yet to have our penicillin moment with the microbiome and mycobiome.

In many ways, 20th century medicine can be viewed as the era of antibiotics.  For all the good they've done, I think someday we'll look back at some of our current "anti" efforts as fighting a losing battle against things that should be our best allies.

My belief is that 21st century medicine will become viewed as the era of coexistence with our microbiota, when we recognize that the health of our microbiome and mycobiome is the same as "our" health. 

Many of may think of our health as a garden, that we must tend carefully -- planting the right things, giving them enough food and water, weeding constantly, and pruning as necessary.  But that's another flawed metaphor: we are not the gardener, we are the garden.