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The US needs a Chief Patient Officer

By KAT McDAVITT and LISA BARI

Regulations are created by well-intentioned government employees who, understandably, focus on the loudest voices they hear. The loudest voices tend to be from organizations — vendors, associations, large corporations — that have the internal and external resources needed to access the federal government, navigate the 80,000-employee Department of Health and Human Services (HHS), and ensure that the perspectives of their employers and members are heard.

Patients do not have the resources to hire lobbyists or high-profile legal teams, nor do they have a large and well-funded trade association to represent their interests. Traditional patient advocacy organizations, while generally well intentioned, are often structured around specific conditions and often are financially supported by pharmaceutical and biotech companies. Because of this lack of access, resources, and representation, and because there is no single senior staff member in the federal government dedicated to ensuring the voice of the patient is represented, the needs and experiences of patients are deprioritized by corporate interests. As noted by Grace Cordovano, PhD, BCPA, a board-certified patient advocate, while speaking during a 2023 Health Datapalooza session on transparency and trust, “We hear a lot about provider burnout, but patients are also burnt out, and we need to take that into consideration when developing our policies.”

Policy implementation matters—and implementation is where patient interests fall through the cracks

Meaningful Use, a part of the HITECH Act within the American Recovery & Reinvestment Act, was well intentioned: Get records digitized for better care coordination.

But implementation and execution matters. Each stage of the $35 billion-plus Electronic Health Record (EHR) Incentive Programs, which evolved into the Promoting Interoperability Programs, was increasingly complex. Pieced together through administrative rulemaking, the program was eroded, mainly by corporate interests, and resulted in clinicians having less time for face-to-face patient interaction. Certified EHR requirements were driven by the most prominent vendors in an objectively fantastic demonstration of regulatory capture. Today, most provider offices use an electronic health record, but patients still do not have seamless access to their complete records. Although we are seeing improvements in interoperability, patients need more than access; they need to be able to act using insights from their health data.

Another example of corporate interests overtaking better outcomes for patients can be seen in the implementation of the Substance Use Disorder Prevention that Promotes Opioid Recovery and Treatment for Patients and Communities Act of 2018, which required states to establish a qualified prescription drug monitoring program (PDMP). A single vendor runs the PDMP in more than 46 states and territories. Thus, instead of sharing protected information with other health data organizations, like health information exchanges, these systems silo it. Many states mandate that that physicians check their state PDMP system separately and then charge those physicians a fee for mandatory access. Instead of helping to coordinate the care of a patient who may be struggling with an opioid use disorder, vendors have used a fear-based regulatory capture strategy at the federal and state levels to ensure these systems are separate from other health data—preserving market share and raising the barrier to entry for new competitive solutions.

Often, patients have no idea what data a PDMP has on them — which, in some states, can include opioids prescribed to pets under their name — and are unable to access it on their own. They also have no way to correct wrong information. Who suffers here? Patients, families, and the physicians who coordinate their care.

The Trusted Exchange Framework and Common Agreement (TEFCA), a part of the 21st Century Cures Act, is also well intentioned. One of the framework’s most significant promises was that, despite leveraging inferior data transfer standards, it would provide a uniform way for patients to request their records at no charge to them. In practice, after multiple delays, false starts, and many rounds of public notice and comment, TEFCA has launched without the requirement that its qualified health information networks (QHINs) and their participants must provide individual access services to patients for their own records.

The regulatory capture strategies of several QHINs and QHIN candidates have been textbook-worthy, ensuring those who have the resources to dominate the market will be locked in. What isn’t locked in? Any mandated access for patients, who were the audience most likely to benefit from TEFCA.

Will individual access services be reinforced in subsequent TEFCA requirements? Maybe, if someone within HHS — like an objective chief patient officer —is fighting for them like their mission and job depends on it.

A step toward progress

Patients, especially our country’s most vulnerable, underserved, and those suffering from financial toxicity, will never be able to afford the lobbying resources and access that corporations and large trade associations have. Consequently, our system will continue to be built to appease the private sector and to put finances over progress. That is, unless we start to ensure the patient voice is heard by creating a senior position within HHS dedicated to improving the experience and lives of 340 million Americans.

Kat McDavitt is president of Innsena and CEO of the Zorya Foundation. Lisa Bari is CEO of Civitas Networks for Health.

Keep it Short

By KIM BELLARD

OK, I admit it: I’m on Facebook. I still use Twitter – whoops, I mean X. I have an Instagram account but don’t think I’ve ever posted. Although I’ve written about TikTok numerous times, I’ve never actually been on it. And while I am on YouTube, it’s more for clips from movies or TV shows than for videos from creators like MrBeast.  

So forgive me if I’m only belated taking a look at the short form video revolution.

As is often the case, a couple articles related to the topic spurred my attention: Caroline Mimbs Nyce’s Twitter’s Demise Is About So Much More Than Elon Musk in The Atlantic, and Jessica Toonkel’s Wall Street Journal article Your Kid Prefers YouTube to Netflix. That’s a Problem for Netflix. I urge you to read both.

Ms. Nyce makes that point that, while Elon may be doing a pretty good job damaging Twitter, much of its woes really are due to microblogging falling out of favor. Her take:

In the era of TikTok, the act of posting your two cents in two sentences for strangers to consume is starting to feel more and more unnatural. The lasting social-media imprint of 2023 may not be the self-immolation of Twitter but rather that short-form videos—on TikTok, Instagram, and other platforms—have tightened their choke hold on the internet. Text posts as we’ve always known them just can’t keep up.

She notes that Twitter is still the dominant platform, by far, for microblogging, but quotes a prediction from data.ai: “While platforms like X are likely to maintain a core niche of users, the overall trends show consumers are swapping out text-based social networking apps for photo and video-first platforms.”

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2024 Prediction: Society Will Arrive at an Inflection Point in AI Advancement

By MIKE MAGEE

For my parents, March, 1965 was a banner month. First, that was the month that NASA launched the Gemini program, unleashing “transformative capabilities and cutting-edge technologies that paved the way for not only Apollo, but the achievements of the space shuttle, building the International Space Station and setting the stage for human exploration of Mars.” It also was the last month that either of them took a puff of their favored cigarette brand – L&M’s.

They are long gone, but the words “Gemini” and the L’s and the M’s have taken on new meaning and relevance now six decades later.

The name Gemini reemerged with great fanfare on December 6, 2023, when Google chair, Sundar Pichai, introduced “Gemini: our largest and most capable AI model.” Embedded in the announcement were the L’s and the M’s as we see here: “From natural image, audio and video understanding to mathematical reasoning, Gemini’s performance exceeds current state-of-the-art results on 30 of the 32 widely-used academic benchmarks used in large language model (LLM) research and development.

Google’s announcement also offered a head to head comparison with GPT-4 (Generative Pretrained Transformer-4.) It is the product of a non-profit initiative, and was released on March 14, 2023. Microsoft’s helpful AI search engine, Bing, helpfully informs that, “OpenAI is a research organization that aims to create artificial general intelligence (AGI) that can benefit all of humanity…They have created models such as Generative Pretrained Transformers (GPT) which can understand and generate text or code, and DALL-E, which can generate and edit images given a text description.”

While “Bing” goes all the way back to a Steve Ballmer announcement on May 28, 2009, it was 14 years into the future, on February 7, 2023, that the company announced a major overhaul that, 1 month later, would allow Microsoft to broadcast that Bing (by leveraging an agreement with OpenAI) now had more than 100 million users.

Which brings us back to the other LLM (large language model) – GPT-4, which the Gemini announcement explores in a head-to-head comparison with its’ new offering. Google embraces text, image, video, and audio comparisons, and declares Gemini superior to GPT-4.

Mark Minevich, a “highly regarded and trusted Digital Cognitive Strategist,” writing this month in Forbes, seems to agree with this, writing, “Google rocked the technology world with the unveiling of Gemini – an artificial intelligence system representing their most significant leap in AI capabilities. Hailed as a potential game-changer across industries, Gemini combines data types like never before to unlock new possibilities in machine learning… Its multimodal nature builds on yet goes far beyond predecessors like GPT-3.5 and GPT-4 in its ability to understand our complex world dynamically.”

Expect to hear the word “multimodality” repeatedly in 2024 and with emphasis.

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A Speech For The Ages – 83 Years Ago This Christmas

By MIKE MAGEE

On the evening of December 29, 1940, with election to his 3rd term as President secured, FDR delivered these words as part of his sixteenth “Fireside Chat”: “There can be no appeasement with ruthlessness…No man can tame a tiger into a kitten by stroking it.”

Millions of Americans, and millions of Britains were tuned in that evening, as President Roosevelt made clear where he stood while carefully avoiding over-stepping his authority in a nation still in the grips of a combative and isolationist opposition party.

That very evening, the Germans Luftwaffe, launched their largest yet raid on the financial district of London. Their “fire starter” group, KGr 100, initiated the attack with incendiary bombs that triggered fifteen hundred fires that began a conflagration ending in what some labeled the The Second Great Fire of London. Less than a year later, on the eve of another Christmas, we would be drawn into the war with the bombing of Pearl Harbor.

Now, 83 Christmases later, with warnings of “poisoning the blood of our people,” we find ourselves contending with our own Hitler here at home.  Trump is busy igniting white supremacist fires utilizing the same vocabulary and challenging the boundaries of decency, safety and civility. What has the rest of the civilized world learned in the meantime?

First, appeasement does not work. It expands the vulnerability of a majority suffering the “tyranny of the minority.”

Second, the radicalized minority will utilize any weapon available, without constraint, to maintain and expand their power.

Third, the battle to save and preserve democracy in these modern times is never fully won. We remain in the early years of this deadly serious conflict, awakened from a self-induced slumber on January 6, 2020.

Hitler was no more an “evil genius” than is Trump. But both advantaged historic and cultural biases and grievances, leveraging them and magnifying them with deliberate lies and media manipulation. Cultures made sick by racism, systemic inequality, hopelessness, patriarchy, and violence, clearly can be harnessed for great harm. But it doesn’t take a “genius.” Churchill never called Hitler a “genius.” Most often he only referred to him as “that bad man.”

The spectacle and emergence of Kevin McCarthy, followed by Mike Johnson, as Speaker of the House, and the contrasting address by House Minority Leader Hakeem Jeffries as he handed over the gavel, represent just one more skirmish in this “War for Democracy.” 

If our goal is a “healthier” America – one marked by compassion, understanding and partnership; one where fear and worry are counter-acted by touch and comfort; one where linkages between individuals, families, communities and societies are constructed to last – all signals confirm that the time is now to fight with vigor.

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A Place to Call Home

By KIM BELLARD

Congratulations, America. We have another new record, albeit a dismal one. According to the Department of Housing and Urban Development (HUD), there are now 653,000 homeless people, up 12% from the prior year. As one can imagine, compiling such a number is problematic at best, and no doubt misses a non-trivial number of such unfortunate people.

“Homelessness is solvable and should not exist in the United States,” said HUD Secretary Marcia L. Fudge. Well, yeah, like kids without enough food, pregnant women without access to adequate prenatal care, or people without health insurance, yet here we are.

HUD says that the increase was driven by people who became for the first time, up some 25%. It attributes this to “a combination of factors, including but not limited to, the recent changes in the rental housing market and the winding down of pandemic protections and programs focused on preventing evictions and housing loss.” As with the recent increase in child poverty, the lessons that we should have learn from our COVID response didn’t survive our willingness to put the pandemic behind us.

Jeff Olivet, executive director of the U.S. Interagency Council on Homelessness, told AP: “The most significant causes are the shortage of affordable homes and the high cost of housing that have left many Americans living paycheck to paycheck and one crisis away from homelessness.” The National Low Income Housing Coalition estimates we’re missing some 7 million affordable housing units, so I suppose we should be relived there are “only” 653,000 homeless people.

“For those on the frontlines of this crisis, it’s not surprising,” Ann Oliva, CEO of the National Alliance to End Homelessness, also told AP. Indeed, we’ve all seen news accounts of homeless encampments spreading seemingly out of control, many of us have spotted homeless people as we go about our daily lives, and yet most of us don’t want either homeless people or low income housing units in our neighborhoods.

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AI Could Have “Unimaginable Consequences” For Democratic Societies, Says Expert.

By MIKE MAGEE

His biography states, “He speaks to philosophical questions about the fears and possibilities of new technology and how we can be empowered to shape our future. His work to bridge cultures spans artificial intelligence, cognition, language, music, creativity, ethics, society, and policy.”

He embraces the title “cross-disciplinary,” and yet his PhD thesis at UC Berkeley in 1980 “was one of the first to spur the paradigm shift toward machine learning based natural language processing technologies.” Credited with inventing and building “the world’s first global-scale online language translator that spawned Google Translate, Yahoo Translate, and Microsoft Bing Translator,” he is clearly a “connector” in a world currently consumed by “dividers.” In 2019, Google named De Kai as “one of eight inaugural members of its AI Ethics Council.”

The all encompassing challenge of our day, as he sees it, is relating to each other. As he says, “The biggest fear is fear itself – the way AI amplifies human fear exponentially…turning us upon ourselves through AI powered social media driving misinformation, divisiveness, polarization, hatred and paranoia.” The value system he embraces “stems from a liberal arts perspective emphasizing creativity in both technical and humanistic dimensions.”

Dr. De Kai is feeling especially urgent these days, which is a bit out of character.

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From Xenobots to Anthrobots

By KIM BELLARD

There were many things I could have written bout this week – e.g., in A.I., in quantum computing, even “transparent wood” — but when I saw some news about biological robots, I knew I had my topic.

The news comes from researchers at Tufts University and Harvard’s Wyss Institute. Their paper appeared in Advanced Science, introducing “a spheroid-shaped multicellular biological robot (biobot) platform” that they fondly dubbed “Anthrobots.” Importantly, the Anthrobots are made from human cells.

Let’s back up. In 2020, senior researcher Michael Levin, Ph.D., who holds positions at both Tufts and Harvard, worked with Josh Bongard, Ph.D. of the University of Vermont to create biological robots made from frog embryo cells, which they called Xenobots.  They were pretty impressive, capable of navigating passageways, collecting material, recording information, healing themselves from injury, and even replicating for a few cycles on their own, but the researchers wanted to find out if they could create biological robots from other types of cells – especially human cells.

Well, the new research showed that they could. They started with cells from adult trachea, and without genetic modification were able to demonstrate capabilities beyond those Xenobots had demonstrated. Lead author Gizem Gumuskaya, a PhD. student said: “We wanted to probe what cells can do besides create default features in the body. By reprogramming interactions between cells, new multicellular structures can be created, analogous to the way stone and brick can be arranged into different structural elements like walls, archways or columns.”   

The Anthrobots come in different shapes and sizes, and are capable of different motions. Ms. Gumuskaya is quite excited about their capabilities:

The cells can form layers, fold, make spheres, sort and separate themselves by type, fuse together, or even move. Two important differences from inanimate bricks are that cells can communicate with each other and create these structures dynamically, and each cell is programmed with many functions, like movement, secretion of molecules, detection of signals and more. We are just figuring out how to combine these elements to create new biological body plans and functions—different than those found in nature.

Even better, Ms. Gumuskaya pointed out: “Anthrobots self-assemble in the lab dish. Unlike Xenobots, they don’t require tweezers or scalpels to give them shape, and we can use adult cells – even cells from elderly patients – instead of embryonic cells. It’s fully scalable—we can produce swarms of these bots in parallel, which is a good start for developing a therapeutic tool.”

They tested Anthrobots’ healing capabilities by scratching a layer of neurons, then exposed the gap to a cluster of Anthrobots called a “superbot.”  That triggered neuron growth only in that area. The researchers noted: “Most remarkably, we found that Anthrobots induce efficient healing of defects in live human neural monolayers in vitro, causing neurites to grow into the gap and join the opposite sides of the injury.”

“The cellular assemblies we construct in the lab can have capabilities that go beyond what they do in the body,” said Dr. Levin. “It is fascinating and completely unexpected that normal patient tracheal cells, without modifying their DNA, can move on their own and encourage neuron growth across a region of damage.”

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The Courage of Corporate America is Needed to End America’s Opioid Crisis

By RYAN HAMPTON

A Kaiser Family Foundation tracking poll published in July found that three in ten U.S. adults (29%) said they had someone in their family who struggled with opioid dependence. Also surprising, and encouraging, was the statistic that 90% support increasing access to opioid use disorder treatment programs in their communities.

As a person in recovery from opioid use disorder and advocate, my read on this data set is that the public support is there. Now more than ever, we need leaders in healthcare, public policy, and corporate America to have the courage to advance effective treatment options. The most inspiring example of the kind of courage we need was the recent news that one of the nation’s largest retail grocery and pharmacy chains, Albertsons, made the financial investment to train their pharmacy staff to administer buprenorphine injections (known as Sublocade) on site.

To someone who is not in the weeds on the issue of opioid use disorder (OUD) treatment programs, this may just sound like a solid business decision. But go a layer deeper and the courage is evident: Albertsons decided to invest in an underutilized treatment option (despite buprenorphine being the gold-standard in OUD treatment) that serves a highly stigmatized patient population who is often shunned at pharmacy counters nationwide. Albertsons chose to put treatment centers for an underserved and highly stigmatized patient population in the middle of their family-friendly, neighborhood grocery pharmacy chain. 

The company rightly recognized that OUD impacts every family and community in this country—including the lives of its patrons. Albertsons pushed through stigma, not leaving the overdose crisis for someone else to address, because it had the ability to provide widespread access through its pharmacies and locations across the nation.

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Lead Pipe Cinch

By KIM BELLARD

The term “lead pipe cinch” means something that is very easy or certain. Here’s two things that are lead pipe cinches: first, that ingesting lead, such as from the water or the air, is bad for us. It’s especially bad for children, whose cognitive abilities can be impaired. Second, that the Biden Administration’s latest proposal to reduce the lead in our drinking water is not going to accomplish that.

The new proposed rules would require that lead service lines be replaced within ten years; there are estimated to still be some 9.2 million such lines in the U.S. The trouble is, no one really knows how many there are or where exactly they are, making replacement difficult. So step two of the rules is for an initial inventory by next October. The “acceptable” parts per billion would drop from 15 to 10. Utilities would also have to improve tap sampling and consumer outreach.

“This is the strongest lead rule that the nation has ever seen,” Radhika Fox, the E.P.A.’s assistant administrator for water, told The New York Times. “This is historic progress.”

Erik Olson, an expert with the Natural Resources Defense Council is also hopeful, telling NPR: “We now know that having literally tens of millions of people being exposed to low levels of lead from things like their drinking water has a big impact on the population. We’re hoping this new rule will have a big impact.”

The EPA estimates the replacement will cost $20b to $30b over the next decade; the 2021 Infrastructure Act allocated $15b, along with $11.7b available from the Drinking Water State Revolving Fund. Of course, the cost will be much higher.

Chicago alone claims it will cost $10b to replace its estimated 400,000 lead pipes. The Wall Street Journal reports: “David LaFrance, CEO of the American Water Works Association, a trade group, said the total cost could “easily exceed” $90 billion. He said the average cost to replace a single lead service line is more than $10,000, nearly double the EPA’s estimate.”

If the federal funds aren’t enough, Ms. Fox says: “We strongly, strongly encourage water utilities to pay for it,” but you should probably expect customers will end up paying – or that some of those pipes won’t be getting replaced.

It’s not like any of this is catching us by surprise. You probably remember the 2014 scandal with the Flint (MI) water crisis, with all those people lining up for bottled water. You may not remember similar crises in Washington D.C., Newark (NJ), or Benton Harbor (MI). “The Washington, D.C., lead-in-water crisis was far more severe than Flint in every respect,” Yanna Lambrinidou, a medical anthropologist at Virginia Tech and co-founder of the Campaign for Lead Free Water, told AP.

The EPA issued a set of rules around lead pipes in 1991, but those rules were watered down, and little progress has been made since. Ronnie Levin, an EPA researcher at the times, also told AP: “But, you know, we’ve been diddling around for 30 years.”

Because, you know, that’s what we do, especially when fixing a problem costs too much money.

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