UNGA '78 -- A Day in Court

 As outlined in the last post, I did get re-energized about the state of COPD, and I was encouraged to bring the story to an august meeting of the United Nations General Assembly last September in New York City.  

How did that come about, you might ask?  What did you say?  And how was it received?

Well, the story could be viewed as a long one, or a short one.

The short version is that I got stimulated about COVID-19 statistics, like the week after I myself got COVID (the first person in Tulare County, California--on March 6, 2020, the same day that President Trump triumphantly announced at CDC that America has "plenty of tests, over a million. . . " when in fact there were none that worked, and only a few that had been shipped.

And I thought back to the old CAPCC days, when the data was slow and imperfect for a disease few cared about.  I thought "THIS will be different.  There will be LOTS of data, coming fast and furious (yes, we might quibble about how 'perfect' it will be)."

So, I began a major data acquisition of COVID data--confirmed cases and deaths--and quickly discovered that, YES INDEED, this was a LOT of data.   I knew an old HP colleague, Scott Futryk, who had a small company called AnywhereAnytime LLC that specialized in multi-variate spreadsheet presentations using PowerBI from Microsoft (Business Intelligence is the meaning of BI--Microsoft dubs it 'Data Analytics Report Software).    I asked him if he could help me construct a PowerBI view that was roughly akin to the old COPD geospatial maps (see blog posts herein for May 1, 2013 and May 11, 2013)

He did, and here is a snapshot of what he built (showing not only Confirmed and Deaths but per capita occurrences alongside those absolute numbers).  

I reported much of this work in another blog, InnovaScapes Institute, something like 49 posts in 54 weeks.    https://innovascapes.blogspot.com/2021/

I also posted one paper in ResearchGate   https://www.researchgate.net/publication/344751028_Four_'waves'_of_Covid_Confirmed_Cases_per_capita#fullTextFileContent

Well, the upshot of three years of work, was that Professor Martin Curley, the chief information officer for the Irish Health Service, was co-chair of the UNGA event.  Curley and I knew each other from our time at Intel Corporation a decade earlier, and he knew of this COVID study.   Hence the invitation.

The net was a chance to present an updated COPD story on the first day, and the COVID story on the second day.  Wow!   So that is 'how it happened'--I'll share what we said in the next post.  

COPD 'today'

 Yes, it's all true.   My old concerns about COPD re-surfaced, AND I "got my day in court" so to speak.   Agitated about COPD fifty-four years ago  (although I didn't then know what emphysema was, or that COPD would later be coined to describe it and its companion, chronic bronchitis), I began a personal inquiry while serving on the Colorado Air Pollution Control Commission (CAPCC).    Ultimately, prompted by encountering Warren Muir in 2010 at Stanford in connection with Katy Borner's exhbit (see post of March 22, 2024), I put considerable resuscitation effort into understanding the fate of COPD research circa 2013-14, which among other things led to creating this blog.

For a quick 'introduction' to this story, see "Johnny Carson died from it" -- my post from May 1, 2013.

https://breathecopd.blogspot.com/2013/05/johnny-carson-died-from-it.html

That series of blogs details 'new findings' from my earlier CAPCC days, and I imagined for awhile that I might get some university traction on the issue.   Well, yes, I did--but what I found wasn't exactly what I had in mind.   "They" would love to research the topic, I found at several prestigious universities, but they expected me to fund the work.   My naïveté really showed up here--how silly of me to expect that I could join a group of serious researchers who would be funded by outside sources (say, NIH, or a clear-eyed foundation, or a patron saint).   

I now know that this finding is not unique.  And a number of billionaires (who CAN fund the work) are putting their money where their personal concerns are.  See, for example, Steven A. Edwards' 2014 article, "Science and the billionaire philanthropists"  where he writes: "For better or worse, the practice of science in the twenty-first century is becoming shaped less by national priorities or by peer review groups and more by the particular preferences of individuals with huge amounts of money to give." https://www.aaas.org/science-and-billionaire-philanthropists.     Edwards, a policy analyst at the American Association for the Advancement of Science, is gravely concerned that this upsets a long-standing national priority approach.

Andy Stirling, writing in Nature early this year, laments this trend, calling it "The Bill Gates problem," while citing the issue that "personal priorities are often trumping real needs and skewing where charitable funding goes."   https://www.nature.com/articles/d41586-024-00394-0

And howls went up about researching some obscure disease and diverting skill and attention from more pressing societal needs--no surprise.   We'll describe some of those as well.

But a key fact missing from most of the lamentations is the speed--or rather, the lack of speed--for issues that beg to be solved.  Witness the COVID-19 response, and consider this July 2023 Forbes article 

https://fortune.com/2023/07/18/billionaires-musk-zuckerberg-thiel-5-minute-phone-call-collison-fast-grants/

EDEN STIFFMAN AND THE ASSOCIATED PRESS -- How a 5-minute phone call between a millennial billionaire and an economist created a $50 million grant program backed by Musk, Thiel, Zuckerberg and more tech luminaries

In March 2020, an experiment in science philanthropy was hatched in the span of a five-minute call. Patrick Collison, the now 34-year-old billionaire CEO of the online payments company Stripe, and economist Tyler Cowen were chewing over a shared concern: Scientific progress seemed to be slowing down. As the first pandemic lockdowns went into effect, researchers were in a holding pattern, waiting to hear if they could redirect their federal grants to COVID-related work. Collison and Cowen worried that the National Institutes of Health wasn’t moving quickly enough, so they launched Fast Grants to get emergency research dollars to virologists, coronavirus experts, and other scientists rapidly.

“We thought: Let’s just do this,” Cowen recalls. “It was a bit like put up or shut up.”Collison and his brother, John — a Stripe co-founder — contributed and along with Cowen raised more than $50 million from some of the biggest names in tech: Jack Dorsey, Elon Musk, and Peter Thiel. Mark Zuckerberg and Priscilla Chan and former Google CEO Eric Schmidt and his wife, Wendy.  The first round of grants went out in 48 hours, and later rounds were distributed within two weeks, a drastic difference from the hundreds of days a scientist typically waits to hear from the NIH.  Grants of $10,000 to $500,000 backed early efforts to sequence new coronavirus variants, clinical trials for drugs that could potentially be repurposed, and a simple and reliable saliva-based COVID-19 test. By January 2022, all the money had gone out the door to more than 260 projects.

Fast Grants is one of many science improvement projects launched or backed by Silicon Valley billionaires since the pandemic began. Donors have channeled hundreds of millions of dollars into research labs and nonprofits to address what they view as problems with how government agencies and institutional philanthropies fund science. They argue that scientists spend too much time seeking funding for grants that are too restrictive and see a need to support high-potential young scientists and risky or speculative projects that are often overlooked or underfunded.

Collison, along with Vitalik Buterin, creator of the Ethereum blockchain platform, and other donors, pledged more than half a billion dollars to the Arc Institute, a new biomedical research nonprofit that wants scientists to focus on science, not chasing grants.  Eric and Wendy Schmidt spun off Convergent Research, a nonprofit helping to incubate independent organizations to develop research tools and niche or underfunded areas of science.

While these contributions are just a drop in the bucket compared with the nearly $50 billion the NIH spends on research each year, they’ve been met with both applause and ambivalence from scientists and philanthropy observers. Many of the experiments are similar to approaches already backed by government, leading some to question whether small-scale funding experiments in science are money well spent. Others question the societal implications when more science research is driven by a handful of tech elites motivated by the “move fast and break things” ethos.

Private donors have long played a role in shaping science in the United States — from the creation of the modern research universities to the independent research institutions of the early 20th century and beyond.  “There is a sort of ‘back to the future’ element to what these guys are doing,” says Eric John Abrahamson, a historian at work on a book about science philanthropy. He sees parallels between today’s donors and Andrew Carnegie and John D. Rockefeller, who wanted to reimagine the institutions of science in the 1910s, ’20s and ’30s.

The federal government became the majority funder of basic science research at universities and nonprofit research institutes in the post-World War II era. Today federal funding for basic science, which provides a foundation for knowledge and discovery rather than solving a specific problem, still exceeds the combined contributions from corporations, universities, and philanthropy. That margin is narrowing, according to National Science Foundation surveys.

The impact of private donors has grown since the 1990s, says France Córdova, president of the Science Philanthropy Alliance, which works to increase giving to science research. Nonprofit and philanthropic contributions for basic research increased from $1.5 billion in 1990 to $9.8 billion in 2020, according to NSF surveys. Contributions from higher education funds, which include money donors gave to university endowments in the past, increased from $1.9 billion to more than $14 billion in that same period. That growth is largely thanks to new philanthropies built on wealth from technology, data, and finance, she says.  These donors “want to apply some of the same entrepreneurial spirit that they used to get their money to philanthropy,” Córdova says.

Brian Nosek, executive director of the Center for Open Science, which works to increase transparency in the research process, applauds donors for helping to shake up how science is funded.  “There are many possible ways to decide what to fund, who to fund, how to fund them, how to track progress,” Nosek says. “We haven’t had a culture of experimentation.”   Nosek is on the board of the Good Science Project, an advocacy group that’s pushing government agencies to make their science grant making more innovative and efficient. Stuart Buck founded that nonprofit last year after a conversation with Collison. Collison and his brother, John, are its biggest benefactors, though they have not disclosed the size of their contributions.

Collison is also involved in the Arc Institute, which he helped launch in 2021 with $650 million pledged by more than a dozen other donors. The Palo Alto-based biomedical research organization provides scientists with no-strings-attached funding over eight-year terms to study the causes of complex diseases like cancer. The effort builds on lessons from Fast Grants. Funding isn’t tied to a particular research project so if scientists want to change course, their hands aren’t tied.

Funding approaches that shield scientists from bureaucracy or allow a wider range of ideas to get support may be useful in a circumscribed way, says David Peterson, an assistant professor of sociology at Purdue University who studies how scientific organizations are evolving. But he has doubts that these efforts will tilt the scale more broadly.   In Peterson’s conversations with scientists, some said they view these donors’ approaches as an extension of the tech world’s fixation with disruption, he says. “There is a feeling that science is another institution like the music industry or taxicabs that are ripe for fundamental transformation to make it much more efficient.”

But for a select group of scientists doing the kind of work these extremely wealthy donors care about, there’s now more money and opportunity.  At E11 Bio, for example, an interdisciplinary team of nine scientists is developing a technology platform for scientists to map every circuit between the 100 billion or so neurons in the brain. Understanding the full architecture of the brain could eventually lead to new treatments for brain disorders.  E11 bio is funded by Schmidt Futures, founded by former Google CEO Eric Schmidt, which spun off the nonprofit Convergence Research in 2021 to help launch independent organizations focused on areas like synthetic biology or how drugs target human proteins. Each research organization receives a $20 million to $100 million budget for a five- to seven-year duration.  Schmidt Futures declined to disclose total funding amounts for this work but in March announced a joint $50 million commitment with hedge-fund billionaire Ken Griffin to launch two more organizations.

It may take years to know whether these efforts succeed.  New approaches can have a big impact if they’re transparent about what’s working — and what isn’t, says Nosek.   “The main limitation that we’ve had in a lot of these efforts to improve science is that it’s done with good ideas and good intentions,” he says, “but without good evidence” to determine whether they’ve worked.

_____

This article was provided to The Associated Press by the Chronicle of Philanthropy. Eden Stiffman is a senior editor at the Chronicle. Email: eden.stiffman@philanthropy.com. The AP and the Chronicle receive support from the Lilly Endowment for coverage of philanthropy and nonprofits. The AP and the Chronicle are solely responsible for all content.

Katy Börner

Katy Börner, my heroine, a major professor at Indiana University with multiple accolades and numerous appointments.   I first learned of her from Davis Masten, who was a key MediaX@Stanford program Advisor for me from 2006-2011.   Six years into an NSF funded program to promote "Data Visualization Literacy: Research and Tools that Advance Public Understanding of Scientific Data", Börner had an exhibit with 60 poster-boards that showed interesting, sometimes exciting, ways to portray data, especially Big Data (although that term hadn't yet reached the trade press).

I called her to ask how we might be able to host her exhibit at Stanford.  It turned out that she'd shown it maybe fifteen times, NOWHERE WEST of the Mississippi River, even though she was at Indiana Univ. This little factoid is remarkably consistent in America, in my experience--the map for New Yorkers that looks west and sees New Jersey and the Pacific Ocean (only) is all too prevalent, as any perusal of sports channels will illustrate on your weekend television.

She said, "If you'll pay the shipping costs, you can have it for three months."  Which we did, hosting it in Wallenberg Hall (the left front building at Stanford when you see the oval lawn with Memorial Church in the center background).   We filled the first floor lobby and hallways, the second floor hallways, and parts of the fourth floor.  We invited the artists (these were, for the most part, computer scientists with artistic skills) to a grand opening, and it was this opening to which Warren Muir attended.

The show was a smash hit, and co-incidentally Edward Tufte lectured on campus concurrently, with no indication to me that he attended our exhibit, although he indeed might be called the progenitor of such efforts.   The fact that my COPD work was several years prior to Tufte's first book is one of those personal satisfactions for which no credit accrues, except for my own enjoyment.

Börner has gone on to author numerous books on the subject, easily the most informative and visually satisfying books on the subject.  Just read this blurb about her latest.

Atlas of Forecasts.   This book came out in 2021.  

Modeling and Mapping Desirable Futures

Forecasting the future with advanced data models and visualizations.

To envision and create the futures we want, society needs an appropriate understanding of the likely impact of alternative actions. Data models and visualizations offer a way to understand and intelligently manage complex, interlinked systems in science and technology, education, and policymaking. Atlas of Forecasts, from the creator of Atlas of Science and Atlas of Knowledge, shows how we can use data to predict, communicate, and ultimately attain desirable futures.

Using advanced data visualizations to introduce different types of computational models, Atlas of Forecasts demonstrates how models can inform effective decision-making in education, science, technology, and policymaking. The models and maps presented aim to help anyone understand key processes and outcomes of complex systems dynamics, including which human skills are needed in an artificial intelligence–empowered economy; what progress in science and technology is likely to be made; and how policymakers can future-proof regions or nations. This Atlas offers a driver's seat-perspective for a test-drive of the future.

A Retrospective--after a decade

 My, my, time flies.   My last post on this COPD topic was ten years ago next month--where did the time go, and what has changed in my perspective since then?   Or, for that matter, the world's perspective?

First of all, I have just hit a somewhat magic milestone--54 years since I was first diagnosed with emphysema, and told that, at best, I had a 20 year forward life-expectancy at that point.   Well, harrumph.

Having no clue what emphysema was, or its prevalence, my first foray to the library (in 1970 , there was no WorldWideWeb) revealed the shocking and disturbing news that this was a terminal, albeit malingering, disease for which there was no known treatment.  Further, that the last ten years of the progression would be marked by essentially becoming an invalid, bound by the constraints of insufficient air to breathe--slowly suffocating, as the article described it.    Years later, the nation saw glimpses of that denouement with Johnny Carson's agonizing last few years.

I had three young daughters at home, and I'd been an active mountaineer in both California's High Sierra and the Colorado Rockies where I was then living.   What?  How can this be?  What might I do?

Over my lifetime, I've now had the privilege of meeting and discussing reactions for many people who have received unexpected and unwelcome bad news.   

First, there is shock and disbelief.  Me?  What?  How?  Why?  This is the rude awakening, the AWARENESS phase, which kicks off a nearly predictable set of reactions.

Right behind awareness is DENIAL.  "Bull****.   Can't be true.  No way, not me."

Then, ANGER.   "What?  Why me?  Dammit, I have other plans, big plans, This is an insult (or worse)"

Many then start what's called BARGAINING.   "Well, if that's true, maybe I can . . . "

More visibly, DEPRESSION sets in.    I still recall the day that my wife at breakfast said something to the effect of . . . "you know, you're a really fun guy to be with, or at least you were.  I'd like you to start acting positive, again, STARTING RIGHT NOW."   This wasn't with regard to my emphysema, but instead to months after a debilitating injury from which I didn't expect to be able to walk again.  But DEPRESSION can be a deep pit, and once you fall into it, it is hard to escape in my experience.

Finally, ACCEPTANCE.  "Okay, dammit, this is the situation.  No escaping it.  Buy in--it's the real deal"

********    

So there is a bit of preamble to say, YUP, I went through all those phases with the emphysema news.  That fueled my desire to learn more about the disease--who gets it, why, and what might be done.  

I found a creative way to get appointed at a tender age to the incipient Colorado Air Pollution Control Commission, the week after the monumental 1970 USA Clean Act was passed, and the First Earth Day was celebrated.   

The information I learned on that Commission was astounding, not least in regard to the political sand economic winds that control and thwart many if not most health concerns.  I also figured out a way to use "new tools" to understand where, when, and why this disease occurs, and what possible options exist.

And that gave me renewed perspective on how people (even supposedly well-educated and learned people) can become entrenched with their own biases, never mind the 'facts' as they might be construed.

For a time, I became a zealot, which quickly turns into becoming a pariah, as perceived by more reasonable (or less actionable) types.   I managed to garner headlines in the Denver Post, which I thought was an honor until I realized that it just makes one stick out, as in the Japanese Mogura Taiji game, which became popular in the US as "Whac-A-Mole"

That led to being replaced (fired, if you will, and replaced by a high-pedigreed well-respected conservative who agreed fully with Governor John Love's pathetic non-action pro-business plan that he carried into Nixon's administration as the first Director of Energy).

And, then, I seemed to 'get well'--at least well enough to function adequately, and I concluded that my zealot days were done--time to move on.

And that period lasted for decades, until I met Warren Muir one early morning in Davis Masten's kitchen in Portola Valley.   I'd never heard of Muir, nor he of me, but Davis was on my MediaX@Stanford's Advisory Board, and also chair of the White House Business Roundtable.  He thought the two of us should meet, but he had no particular topic in mind.  

I asked Muir the obvious question for any ex-mountaineer--"Are you related to John Muir, the famous environmentalist?"   I'd already become close friends with Gifford Pinchot III, whose grandfather with Muir and Teddy Roosevelt had promulgated the National Parks idea, and founded the US Forest Service.

Muir's answer was an infectious laugh--"Yes, he was my great-uncle"

Muir didn't go on to describe his own career, which I now know to be stupendous.  "Executive Director, Division of Earth and Life Studies, National Academy of Sciences, National Academy of Engineering, Institute of Medicine, National Research Council, Washington, D.C; Warren has served under three U.S. Presidents and is the recipient of multiple honors and awards including the Environmental Protection Agency's Outstanding Service Award."  Wow, been there, done that!

Muir was "in town" to see the Katy Börner NSF exhibit about graphical information that I was hosting at Stanford, and he asked me why I had elected to sponsor the exhibit.   I said that I had been interested in these types of graphical representations since my days in Air Pollution Control, when I used them to find some causal relationships for emphysema.  He expressed surprise, and pressed the question, saying, "what did you find?"  As I told him, his eyes widened, and he said, "I found exactly the same thing, four years after you did."  We were thus bonded, and it encouraged me to do further reflection.

I don't have time in this post to explain, but that led to creating this Blog, for which I was enthusiastic but didn't reach a wide audience.   I did write a chapter for my "Early HP Days" memoir https://www.amazon.com/Permission-Denied-Charles-H-House/dp/130086429X and even applied for a couple of research grants via UC Santa Barbara and Yale, only to discover that they would expect me to fund the grants, not receive funds from them.  Ah, well. . .

And then I got COVID in March 2020, and started a wholly different path, that today begins to interweave with this COPD story.  

So, a very long pre-amble here, to tell the 'current version' for which I had the good fortune to present at the United Nations General Assembly in September 2023 for their Global Health Initiative.  The story actually is getting more interesting! 

Stay tuned.  The next post is not ten years away.

Progress (or lack of it) report

Seven months have elapsed since I last posted to this blog.  What's happened?

Well, there have been several hundred page visits (not several thousand or million).

The universities who showed initial interest somewhat stole away in the night.  One (actually two, in partnership) would LOVE to work on this problem with some graduate students, PROVIDED I'd pay for the work.  Right...

Meetings in Washington D.C. were encouraging several times, but no follow-up occurred.  After a series of attempts to follow up, I quit chasing each of those trails for the moment.

I do include one slide in most of my "innovation denied" talks--that is the Big Data slide which shows the rising number of COPD deaths, and the correlation between smokers and lung cancer, alongside the remarkably NON-CORRELATED COPD rates.

Most of these audiences, primarily high-tech managers, seem properly impressed, without any means or apparent interest to go chase this problem.

As for InnovaScapes Institute, we ourselves are busy with other projects too.  Perhaps, though, we could put together a small monograph regarding Big Data?

FUNDING for disease research

Dan Campbell, a member of USA Today's Board of contributors and a long-time Washington Post correspondent, penned an article for USA Today yesterday entitled "Demand more funding for Alzheimer's."  It pictured singer Glen Campbell (related?) along with twenty column inches of text.

Campbell has found similar disconnects in the system to our findings re COPD research.  For example:

From 2000 to 2010, the percentage of deaths in the U.S. from cancer, HIV/AIDs and cardiovascular diseases declined, some sharply, while deaths of people with Alzheimer's skyrocketed.   The numbers reflect the money spent by the National Institutes of Health on research.  For example, this year NIH is spending nearly seven times as much on HIV/AIDs as it is on Alzheimber's, though there are five times as many people with Alzheimer's as with HIV/AIDS.    This ratio 35 to 1, is shocking, but sadly true.

Campbell comes at the issue several ways -- the costs in the system, an aging bias in the research community (4% of Americans < 65 afflicted, almost 50% over 65 afflicted).   I don't buy this particular statistic -- it probably should be 'almost 50% of those over 65 will show symptoms at some point' which is very different, and doesn't mean that half of us will inevitable drool for many years while gibbering.   Nonetheless, the point is clear -- this is a frightening and debilitating disease that is hugely underfunded.

I love Campbell's closing idea -- demand that their U.S. representatives and senators spend one hour, without aides or professional escorts, wandering around an advanced-staage Alzheimer's ward.  Not only would that quickly loosen federal purse strings for Alzheimer's research, those purse strings would virtually disappear.  Guaranteed.

That is a great idea, and having tended for an aging parent severely afflicted by this horrible disease, I applaud the idea.  However, I am not so sanguine as to think Congress would act.  They cannot get their minds around gun control, or a million other topics -- this one seems equally elusive.

But, let's hope that a fire could be lit.  And if it burns a little brightly, maybe COPD, which kils three times as many and has one-third the research money of Alzheimer's, might also be given more hope.

COPD in a TEDx talk

I couldn't resist inserting a few slides into this TED talk about Innovation Resilience

http://www.youtube.com/watch?v=a2oeSFkV7eE&feature=youtu.be

The pertinent time is between 13:00 and 15:05 minutes