Here’s the money quote – specific to healthcare:

The amazing thing is that there are people who have never left this country who talk about the fact that we’re the greatest country on earth. How fucking dumb is that? Because you don’t know – you haven’t left here. There are countries that may be giving shit away every day. Canada’s one of those countries. You know what they give away? Health insurance!

The entire segment is a scream – and worth the 4 1/2 minutes. Here’s the YouTube link:

Lewis Black on Broadway – on Healthcare

The healthcare implications are significant – but I can’t help but think this is even deeper – more profound than all the challenges (and there are many) related to our healthcare system. This 6 minute video (using compelling graphics) paints a sobering picture of that income inequality nationally:

Income Inequality in U.S.

This relates to healthcare in that all of these people (across the U.S.) can’t afford healthcare – but that doesn’t mean they don’t have healthcare issues. Sleeping in tents, without knowing where meals are coming from – will create healthcare issues. Those healthcare issues often show-up in the Emergency Room – where the law stipulates that all people *must* be seen and treated (the law is called EMTALA).

That “triagecare” is among THE most expensive healthcare available – and when people can’t pay for it – those costs are shifted to all of us in the form of higher healthcare delivery charges – and insurance premiums. It’s also why several insurance carriers in California successfully pushed for double-digit rate increases – this year.

For those who haven’t seen this chart – it highlights why our healthcare systems has become a global embarrassment - and national emergency.

Given their proximity to New York City, many of these small Connecticut towns are considered “bedroom” communities – and they are often described as bucolic. In fact, my father did commute daily to New York City from a small outpost on the commuter line called Talmadge Hill.

Our house was within walking distance of West School – and an outdoor ice-rink where I had my very first paid job. I would often walk home from that ice-rink. At night. Alone. Over the backwoods and fields which, given the time of year, were typically covered in snow. I do recall a certain fear in that darkness – but it was based entirely on the unknown (and mostly imagined) wildlife. There was never a fear of neighbors or other local residents. At least in my own personal recollections – I think the “bucolic” moniker fit pretty well.

For most of us who experienced that life, that region, that culture – the perception and images have remained fairly intact through the years. Clearly all that changed on Friday.

At this point, there is much we still don’t know, including what caused a 20-year-old to snap so violently and so completely. What we do know is that, in the blink of a tragic instant, Sandy Hook is now the second deadliest school massacre on U.S. record. After the shooting ended, 28 people lay dead – including the gunman (20 year-old Adam Lanza), 20 kids and 6 women at the Sandy Hook Elementary School. Adam’s mother – Nancy Lanza – was also found dead at her home in Newtown – a few miles away from the school.

The sequence of events and images from Friday are all too familiar. Breaking network headlines followed by chaotic news footage and pictures. From there it’s a blurry cascade of live interviews, heavily armed troops in formation, a tearful address by the President, and a long list of unanswered question.

In the middle of the twitter stream was this one by New York City Mayor Mike Bloomberg:

He’s right – and we all know it. This shouldn’t need or require “leadership” – or debate – or swing votes. It should be a “no brainer.” But it won’t be. The list of these massacres is now too long, too recent and all too tragic.

• Sandy Hook – 27 killed, 1 injured
• Virginia Tech – 32 killed, 17 injured
• Tucson – 6 killed, 13 injured
• Aurora – 12 killed, 58 injured
• Oak Creek – 6 killed, 4 injured

There were more shootings over the weekend, including two in Alabama on Saturday. One of those also included an assault rifle – the infamous AK-47. Even after 60 years of production, the AK-47 remains the most widely used and popular assault rifle in the world because of it’s durability, ease of use and low cost.

These events are all singular, but they are also reflective of a mindset and thinking that is heavily entrenched – and well financed. I can’t recall the place, but I can still remember the defiant pose of Charlton Heston brandishing a long-rifle in front of the National Rifle Association. It was both provocative – as it was clearly meant to be – and not that long ago (May, 2000). His personal armory (pictured here) was certainly battle worthy.

The armament itself may be the deadliest component of the NRA’s formidable weaponry – but it’s definitely not the most influential. The root cause of this National conflict is money – lots of it – used with maximum effect to influence power and to thwart legislation. We see this same conflict in a wide range of legislative battles. Another one, of course, is healthcare. Like gun-control, the air is often filled with the promise of imminent disruption. Untold millions are being invested in an attempt to bring much needed change – but the entrenched interests are heavily fortified – and financed. I often use evidence provided by the Organization of Economic Cooperation and Development (OECD) to support our dire need for systemic healthcare change. The OECD evidence of Assault Deaths is equally damning.

Even with the downward trend – the U.S. is easily twice the number of assault deaths per 100k population compared to other industrialized countries. I started this year with A Healthcare List. Sadly, we arrive at the last few weeks with another list. This one is the list of fatalities from Sandy Hook Elementary School:

Adults:

• Rachel Davino, 29, teacher
• Dawn Lafferty Hochsprung, 47, principal
• Anne Marie Murphy, 52, teacher
• Lauren Rousseau, 30, teacher
• Mary Sherlach, 56, school psychologist
• Victoria Soto, 27, teacher
• Nancy Lanza, 52, perpetrator’s mother

Children:

• Charlotte Bacon, 6
• Daniel Barden, 7
• Olivia Engel, 6
• Josephine Gay, 7
• Dylan Hockley, 6
• Madeline F. Hsu, 6
• Catherine Violet Hubbard, 6
• Chase Kowalski, 7
• Jesse Lewis, 6
• Ana Marquez-Greene, 6
• James Mattioli, 6
• Grace McDonnell, 6
• Emilie Parker, 6
• Jack Pinto, 6
• Noah Pozner, 6
• Caroline Previdi, 6
• Jessica Rekos, 6
• Avielle Richman, 6
• Benjamin Wheeler, 6
• Allison N. Wyatt, 6

The other tweet that helped me on Friday was this one by Zynga CEO, Mark Pincus:

His tweet included a link to an online petition. The intent of the petition is to: Immediately address the issue of gun control through the introduction of legislation in Congress. Here’s the link. It’s time to sign it.

http://hc4.us/WHpetition

“Weave together resources and opportunities and put on a show. That’s what impresarios have always done. You rent the opera hall, find the singers and sell tickets. You see an opportunity, connect people who can benefit from it and make something happen.”

In the broadest creative sense, and evidenced by the global success of all things TED, that’s also an apt description of Richard Saul Wurman. Given the sheer volume of work (spanning decades) with countless awards (more pending), and over 80 books, if there was an Impresario Hall of Fame, Richard would certainly be an honorary member – if not the World’s first inductee.

Last week, the master weaver unveiled his latest creation – The WWW Conference – in Redlands, California. The “W’s” in the title were an homage to all those words starting with that letter, but it was the subtitle – Intellectual Jazz – that gave us a better sense of the journey ahead.

Much of the real creativity for the conference was in the format itself. A key element of that was the intimate, 299 seat theater at Esri – the pioneering GIS software company founded by Jack Dangermond. Esri’s own tagline is “Understanding our World.”

“Richard and I are friends and share many similar passions, so it was an honor when he asked Esri to host a conference that would promote understanding and conversation.” Jack Dangermond

This theater was the central design element used with great architectural effect as the backdrop for two days of conversations – between two people – around a wide range of disciplines and pursuits. An intimate venue, a single host, two people and one audience.

Design simplicity aside, it’s not as easy as it sounds. A fact which Seth also noted:

But actually becoming an impresario is far more difficult than it looks. Not because the systems aren’t in place, not because it’s not straightforward, but because it is fraught with risk.

In this case, much of that risk was in the combined effect of the individual pairings with improvised dialog. While each of us experienced a uniquely personal view – most of it, by any definition, was truly inspirational. A very small portion of it was less so – but only because the conversation became more of a traditional interview. These too were fascinating – just not as fascinating as when the participants were fully engaged and conversant with each other.

The other sizeable risk is a host who might be tempted to over-steer, over-direct or over-influence the conversation. This is where Richard’s commitment to listening (as an extension to understanding) played an equally critical component. He goaded, humored and sometimes interjected a thought or question, but most of the time – like all of us in the audience – he just “sponged it in” (thread by will.i.am).

Each of the pairings were hand selected and focused around themes that spanned many of life’s major disciplines: scientists (different stripes), writers, doctors, magicians, dancers, musicians, architects, filmmakers and designers (also different stripes). All had rich histories of creative personal achievement and many were at the pinnacle of their trajectory on the global stage. The full list is here.

The principal theme – which is also Richard’s lifelong pursuit and passion – is making information understandable.

The fabric we tried to weave was loosely based on threads of thoughtful approximation. That’s what astronomers wind up doing much of the time and that’s the lead I was trying to follow throughout this event. Richard Saul Wurman

Given the sheer number of pairings (24 spanning 2 days), it was an amazing compilation that will be available later this year, possibly as an “appumentary” (a creative extension coined by Jon Kamen – the Academy Award winning documentarian who was paired with Benedikt Taschen).

There were no lowlights that I saw so the filter quickly becomes the higher-lights. For me personally, those included the pairing of Jeffrey Katzenberg with Norman Lear, Megan Smith with Nicholas Negroponte, and Matt Groening with David Brooks – to name but a very select few. Capturing a few intimate stories of working with Frank Sinatra by Quincy Jones was the daunting task of Damian Woetzel – a former Principal Dancer with the New York City Ballet. will.i.am also gave an impassioned tribute to his mother – for “sequencing his life.” The full pairing list is here

All of this was interspersed with the insights and musical interludes of Yo-Yo-Ma, Michael Glen Block and Cristina Pato. The stage itself was tastefully arranged with an interpretation in glass – called Macchia Forest – by world renowned artist Dale Chihuly.

“I was astounded with the great ideas and creativity that the conference ultimately produced.” Jack Dangermond

For me, it took the two-time Pulitzer Prize winning biologist – E.O. Wilson – to deliver an insightful summary toward the end of the second day. He wasn’t sure of its source – but then mused it might have simply been a fortune cookie. A quick search suggests that it’s an old Chinese proverb:

“Tell me and I’ll forget; show me and I may remember; involve me and I’ll understand.”

This conference wasn’t just involving – it was immersive. A sampling of the (paraphrased) short threads I caught were:

will.i.am – “We applaud the sequencing of the genome but not life.”

Norman Lear – “Social media is controlled by the 18-39 demographic – but that’s the age that understands the least about us as a people or culture.”

Dr. David Agus – “Our bodies are talking – we’re just not listening.”

David Brooks – “The point isn’t to find yourself – it’s to lose yourself.”

Peter Raven – “Worldwide, there will be 200,000 more people at dinner tonight than last night.”

Geoffrey West – “About 1.5M people are urbanized every week.”

Nicholas Negroponte – “Innovation is the poor cousin of creativity.”

Todd Oldham – “Learn to sew.”

This last one really struck me. As a fashion designer – Todd’s hands are affected (as many in the industry are) by carpal tunnel syndrome. Not from actual hand sewing – although that’s a contributing factor – but from the near constant use of scissors to cut the fabric. Threads, fabric, weaving, sewing. Maybe that’s how we get to understanding. It’s certainly the creative mission of many – including those who have dedicated their life to it. That definitely includes all the impresarios. Perhaps none more so than Richard Saul Wurman.

“I was terrified – but the audience was spectacular and I learned a lot around the spontaneity of dialog with staging. There were a few hints of what I might do next.” Richard Saul Wurman

Cloudy With A Chance Of Models

One of the most valuable research tools is a model of the type of problem you are trying to solve. This allows for study of the problem mechanism and allows attempts at solving various parts of the problem without disrupting an actual patient or when such is unavailable. Models can be cells in a dish, creatures of progressive complexity, or, not requiring warehousing and organic maintenance, computational models that exist only on computers. Computational models can be convenient but typically involve terabytes or petabytes of data (terabyte = 1000 gigabytes, petabyte = 1000 terabytes) and can require powerful processors to work through the data to produce an answer within a reasonable time frame. Such infrastructure can be prohibitively expensive for new and/or small research groups.

With the Internet, new options for renting infrastructure exist. Services such as Amazon’s EC2 allow for rental of computer infrastructure that can be scaled up or down at will without expensive equipment purchases, technician costs, and downtime. This type of service is known as “cloud computing” and might be more familiar to readers in forms such as Gmail or Google Docs. This lack of centralized infrastructure also supports and promotes collaboration between geologically-dispersed teams communicating electronically.

A large infrastructure and chatty crew of brainiacs is only part of the story. In order to come up with something useful you have to have data to model on and an algorithm to sift through the data and produce a result. Fortunately, public databases of information are available such as the National Center for Biotechnology Information (part of the United States National Institutes of Health), among other searchable databases. There are programming languages which are uniquely suited for data extraction, manipulation, and statistical analysis. In 2008, the technique of data-mining in multiple huge medical databases was dubbed Translational Bioinformatics. Today, that technique can be applied by “guerrilla biotechs” started by motivated people in garages and basements to find appealing new targets to treat diseases.

There is already successful precedent for creating open-source medical systems. I am part of a team doing just that. We are putting together a structure using cloud infrastructure and open-source software tools to search medical databases for targets of opportunity. Our first condition will be Amyotrophic Lateral Sclerosis (aka ALS or Lou Gehrig’s Disease). ALS touches us because I was diagnosed with it in 2005, and our primary backer was diagnosed more recently. Examples of some of the databases we would initially explore would be gene expression in the ALS rat model and post-mortem human tissue samples. Our team currently includes an MD with expertise in cryptography, a neurologist, a pioneer in the area of biohacking, a statistician, and me.

Our approach is to act aggressively to find targets and then push them through preclinical investigation to human trials. We can move aggressively with limited funding because we have no central infrastructure and outsource material and laboratory services. Our growing team is geographically and temporally dispersed which allows for tremendous flexibility. With email, chat, and document repository on cloud infrastructure, we can very effectively communicate ideas and form concepts which we can then contribute to separately in our different skillsets to produce work product. Further, the tools we develop for our own use will be released as open-source so that others can improve and extend them to open up even more possibilities for other amateur scientists.

This is an exciting time in medicine. With the availability of infrastructure-for-hire, access to information, and global communication, smart people can get together and push the boundaries of research. They can find new and/or overlooked targets which could be the next great cure. The failure rate is going to be high, but the barrier to entry is very low. This should enable multiple shots on goal from some rather ingenious angles. “Guerrilla biotechs”, blending the previous waves of Internet and Biotech, are the next great wave of invention, development, and industry. Interested in helping us? Drop us a line!

• the art of managing one’s own biology using a combination of medical, nutritional, electronic, and Quantified Self techniques
• The second is derived from the biopunk (open access to genetic information) movement in which people create synthetic biology using DIYbio. In this context, biohacking refers to mixing and matching genes and characteristics from different species.

This isn’t for the faint of heart. The use of blood samples and other lab tools and materials is not only possible – but likely. For some, already tattooed and pierced, the ick-factor is no deterrent and biohacking could simply be the next logical step in that ever evolving fascination. The point is, there’s no single discipline here and it’s very much a whole new – and fragmented – frontier.

In some ways, it’s relatively easy to see how biohacking evolved from and through the whole quantified self movement. That too is fairly new and was arguably started by Wired Magazine editors Gary Wolf and Kevin Kelly in 2007 as “a collaboration of users and tool makers who share an interest in self knowledge through self-tracking.” They were among the first to recognize that people were becoming more interested and engaged with data streams that are a natural part of human biology – mostly their own. Tapping into and capturing that data has become easy, safe and relatively cheap.  In 2010, Gary concluded his TED@Cannes talk with this understated and ambitious call to arms:

“If we want to act more effectively in the world – we ought to get to know ourselves better.”

Devices like the Fitbit which easily track sleep and activity were among the first devices to scale fairly quickly. Since then, smartphones themselves, using cheap accelerometers and high-definition cameras – are quickly becoming the actual data capture device. The precision can be amazing – although not always sufficient for clinical use. FDA approval has been granted for some and pending for others. The line between what is and what isn’t a medical device is still a bit blurry and really belongs in a separate discussion. EyeNetra is one I saw earlier this year that uses a smartphone and a $2 plastic lens attachment for delivering mobile eye exams. According to the bold and provocative statement on their website:

“As it turns out, phones could prove the ideal device for conducting eye tests.”

So, how much do those machines cost that we gaze through at the optometrist? Another one is Sanofi’s iBGStar blood glucose meter (now with full FDA approval). The iBGStar costs $99.95 from the Apple Store and is compatible with the 2nd, 3rd and 4th generation iPod Touch as well as the iPhone 3G, 3GS, 4 and 4S.

Apple also filed patents on capturing blood oxygen levels, temperature and heart rate through those ubiquitous (and mostly white) ear buds. On the app side, there are now thousands that you can download that run the gamut of both “health” and “wellness.” A fairly recent example is Cardiograph by Macropinch - which measures heart rate. This one’s not intended for clinical use (yet) but even without the clinical precision – the sheer ease of use and very low (or no) cost will help with the ongoing management of people with cardiac conditions. Simply put your finger completely over the camera lens, press start/stop – and you have a fairly basic – and mobile – ECG monitor.

All of which clearly falls under the domain of the quantified self. That’s fairly easy to understand and embrace but that’s not really biohacking. Like the garages of Hewlett-Packard and Jobs-Wozniak, this brave new frontier has begun by hacking hardware, firmware and software – often in a very similar garage floor space. These pioneers are building low-cost lab tools and genomics kits for a new generation of hackers. This time, instead of moving bits and data on a screen the goals are nothing less than genetic powered biology. Last month, Wired Magazine wrote an article – Genome at Home: Biohackers Build Their Own Labs. The article highlighted some of the early devices being built that often include low-cost Arduino boards (an open source, single-board microcontroller) and 3-D printed components. The devices – several under $100 – come with names like GeneLaser, SpikerBox and OpenPCR (PCR = polymerase chain reaction – the process of heating and cooling genetic material). The scientific pursuit here isn’t just reading and writing bits – it’s reading and writing DNA. The manipulations aren’t computer code – their genetic code. Same hacking – different material. As Bill Gates said 2 years ago in another Wired article:

“Creating artificial life with DNA synthesis. That’s sort of the equivalent of machine-language programming. If you want to change the world in some big way, that’s where you should start — biological molecules.”

“How can we continue to argue about who pays for what – without knowing what’s worth paying for?”  

That’s basically the question that H. Gilbert Welch, Professor of Medicine, Dartmouth Institute for Health Policy & Clinical Practice, asks at the end of his New York Times piece: Testing What We Think We Know.

For years we’ve been sold on the clinical benefits of things like PSA Screening, Hormone Replacement Therapy, Colonoscopies and Mamograms. Over the last decade, millions of these clinical tests have been done – but the clinical evidence to support their benefit wasn’t only missing – in many cases these procedures often resulted in more harm than good. This chart for PSA Screening is (now) a classic example – and truly shocking:

From two studies conducted over 7-10 years (one here and one in Europe) there was NO benefit at all to PSA Screening and about 20% of men got either a false alarm and biopsy or were diagnosed and treated for prostate cancer unnecessarily. Up until 2009, about 30 million men received a PSA Test each year – at a cost of about $3 billion annually (just for the test). The effects of the surgeries are often horrendous – including incontinence, erectile dysfunction and impotence.

Earlier this year, Dr. Otis Brawley published his book How We Do Harm: A Doctor Breaks Ranks About Being Sick In America. As a part of the release Dr. Brawley recounted the story of a woman named Helen who was diagnosed with early stage breast cancer. As was fairly common in the early 1990′s – surgery was followed by high doses of chemotherapy – and a bone marrow transplant.  Quoting Dr. Brawley:

“The therapy Helen received was expensive and commonly given to women with breast cancer in the early 1990s. During this time, numerous women sued insurance companies who did not want to pay for the therapy and nearly a dozen states passed laws saying insurance companies had to pay for it.”

“There was one really good reason why the health insurers did not want to pay for high dose chemotherapy and bone marrow transplant for breast cancer:  No study had ever been done to prove it beneficial.“

“Even without evidence, some patients and their doctors had faith that it worked. The procedure was common because some doctors taught that the transplant was beneficial to patients. Truth be told, it was very beneficial to the doctors and hospitals offering it.”

“By 1999, well after Helen had recovered, three well-designed clinical trials were completed. They showed that bone marrow transplant and high dose chemotherapy, a treatment now common for nearly a decade and a half, was not better than the standard therapy and there were indications it was more harmful.”

In the course of the campaign road – and rhetoric ahead, the question posed by Dr. Welch sure seems worth asking. A lot. Not just in one direction. But every direction. Come to think of it – why haven’t we asked this before? For a system that consumes $3 trillion a year – and about 18% of our GDP – it seems like it would be pretty important. Our country’s status as the most expensive system on the planet is legendary. Some have argued it is well worth every penny given the higher quality of clinical care we – and the world – benefit from.  We spend untold billions on pharmaceutical Research & Development. Billions more on advertising the new drugs and therapies. Isn’t it time we started to spend more money on the clinical research to support all the claimed benefits? Shouldn’t we know what’s worth spending money on rather than arguing about who’s going to pay for what? Along with Dr. Welch – I’m just asking.