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Who Could (Possibly) Be the Ideal “Chief Patient Officer”?  (And Other Ideas that Sound Better on Paper than in Practice)

By JONATHON S. FEIT

If ideas presented in essays on The Health Care Blog and other healthcare forums are meant to be rhetorical, without intention of turning notions into reality on behalf of patients who need genuine, intimate, desperate help…then feel free to ignore this essay entirely. 

Some among us—the State of Washington’s Co-Responder Outreach Alliance; Lisa Fitzpatrick’s Grapevine Health, which specializes in “street medicine” and advocacy in and around Washington, D.C.; Thorne Ambulance Service, an inspirational ambulance entrepreneur bringing both emergency and nonemergency medical transportation to underserved rural spaces (and more) across South Carolina; and the RightCare Foundation in Phoenix, a firefighter-driven organization dedicated to ensuring that patients’ needs and wishes are honored during critical moments, spring fast to mind—are stretching hands across the care continuum while pounding the table for interoperability at scale because PEOPLE. ARE. FALLING. THROUGH. THE. CRACKS. AND. DYING.  

Thatincludes responders who run toward the crises; into alleys; who risk their own lives, health, psyches, families, and futures because, as Josh Nultemeier—Chief Paramedic and Operations Manager of San Francisco’s King-American Ambulance, and a volunteer firefighter in the Town of Forestville—put it so simply in a social media post: “People could get hurt.” Moral override—that matter-of-fact willingness to risk himself for strangers who lack any other path to save themselves—is what makes Josh (and others who believe as he does) heroic.

Solving problems like substance use disorder—coupled with an increasing awareness of the lack of interoperability with prescription drug monitoring programs (PDMPs), many of which are run by Bamboo Health, which today imports zero data regarding out-of-hospital overdoses—is urgent. If an overdose is reversed in an alley, an abandoned home, a tent or “under the bridge downtown,” by an ambulance, fire, or police service pumping Narcan to get breathing going again, the agency’s lifesaving efforts get zero “credit” in the data. The downstream effects of this information sharing breakdown make it difficult to settle for less-than-bona fide interoperability: there is neither time to waste nor margin of error, yet hospitals and healthcare systems cannot even “see” the tip-of-the-tip-of-the-spear.

A similar emotionality makes it difficult to tolerate lamentations about information sharing when states like California—and the federal Office of EMS, inside the National Highway Traffic Safety Administration—are transforming interoperability into a standard operating procedure. As a listener to the “Health Tech Talk Show” since its start, I have struggled with hearing Lisa Bari and Kat McDavitt deride whether interoperability is “real.” It is real. It is happening, and has been automated for years—for example, with both the Quality Health Network and Contexture (formerly CORHIO) in Colorado—empowering agencies of all sizes to care for patients experiencing healthcare emergencies, and those who have children with Duchenne’s Muscular Dystrophy and other diseases. Such efforts should be celebrated for their meaningful impact on patients who rely on ambulance services to get them the care that they need—and sometimes to get them to the care that they need. 

Yet no panel at the national conference for CIVITAS was dedicated to interoperability to or from ambulances, despite that some of America’s most active health information exchanges—coast to coast—have automated interoperability involving Fire, EMS, Non-Emergency / Interfacility Medical Transport, Critical Care, and Community Paramedicine. No mention highlighted widespread efforts to make POLST forms accessible to Mobile Medical professionals, thanks to prioritization of the ethical treatment of medically frail patients after COVID-19 and a New York Times piece called “Filing Suit for Wrongful Life.”

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Zombie Viruses of the Permafrost

By KIM BELLARD

We’ve had some cold weather here lately, as has much of the nation. Not necessarily record-breaking, but uncomfortable for millions of people. It’s the kind of weather that causes climate change skeptics to sneer “where’s the global warming now?” This despite 2023 being the warmest year on record — “by far” — and the fact that the ten warmest years since 1850 have all been in the last decade, according to NOAA.

One of the parts of the globe warming the fastest is the Arctic, which is warming four times as fast as the rest of the planet. That sounds like good news if you run a shipping company looking for shorter routes (or to avoid the troubled Red Sea area), but may be bad news for everyone else.  If you don’t know why, I have two words for you: zombie viruses.

Most people are at least vaguely aware of permafrost, which covers vast portions of Siberia, Alaska, and Canada. Historically, it’s been literally frozen, not just seasonally but for years, decades, centuries, millennia, or even longer. Well, it’s starting to thaw.

Now, maybe its kind of cool that we’re finding bodies of extinct species like the woolly mammoth (which some geniuses want to revive). But also buried in the permafrost are lots of microorganisms, many of which are not, in fact, dead but are in kind of a statis. As geneticist Jean-Michel Claverie of Aix-Marseille University, recently explained to The Observer: “The crucial point about permafrost is that it is cold, dark and lacks oxygen, which is perfect for preserving biological material. You could put a yoghurt in permafrost and it might still be edible 50,000 years later.”

Dr. Claverie and his team first revived such a virus – some 30,000 years old — in 2014 and last year did the same for some that were 48,000 years old. There are believed to be organisms that ae perhaps a million years old, far older than we’ve been around. Scientists prefer to call them Methuselah microbes, although “zombie viruses” is more likely to get people’s attention.

He’s worried about the risks they pose.

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Kota Kubo, Ubie

Kota Kubo is the CEO of Ubie, a Japan-based symptom-checking company. Ubie has raised over $75m including a $45m round in 2022. They were focusing on the Japanese market but have been available in the US since 2022, and are expanding their presence there dramatically in 2024. It’s a direct to consumer product with a business model of helping pharma companies understand their patients better–while of course not letting them have patients’ private or identifiable information. This is a little different than most symptom checkers who tend to work with providers or plans, and I met Kota in Tokyo late last year to discuss the business and get a little demo–Matthew Holt

Au Contraire

By KIM BELLARD

Last week HHS announced the appointment of its first Chief Competition Officer. I probably would have normally skipped it, except that also last week, writing in The Health Care Blog, Kat McDavitt and Lisa Bari called for HHS to name a Chief Patient Officer. I’ll touch on each of those shortly, but it made me think about all the Chiefs healthcare is getting, such as Chief Innovation Officer or Chief Customer Experience Officer.  

But what healthcare may need even more than those is a Chief Contrarian. 

The new HHS role “is responsible for coordinating, identifying, and elevating opportunities across the Department to promote competition in health care markets,” and “will play a leading role in working with the Federal Trade Commission and Department of Justice to address concentration in health care markets through data-sharing, reciprocal training programs, and the further development of additional health care competition policy initiatives.” All good stuff, to be sure.

Similarly., Ms. McDevitt and Ms, Bari point out that large healthcare organizations have the staff, time, and financial resources to ensure their points of view are heard by HHS and the rest of the federal government, whereas: “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.” They go on to lament: “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.” Thus the need for a Chief Patient Officer. Again, bravo.

The need for a Chief Contrarian – and not just at HHS – came to me from an article in The Conversation by Dana Brakman Reiser, a Professor of Law at Brooklyn Law School. She and colleague Claire Hill, a University of Minnesota law professor, argue that non-profit boards need to have “designated contrarians.”

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Nicola Tessler, CEO, BeMe Health

Nikki Tessler is the CEO of BeMe Health. She is a psychologist who has built a relatively new company with a self service tool and coaching service for teens. It’s essentially trying to convert teens’ social media time to good use with support, affirmations, coaching and safety–and much more.. I interviewed Nikki and got a full demo over the holiday break. There’s a lot of information here about the teen mental health question (yes it’s bad!), about the company funding & strategy, and great understanding of the product…which is pretty unusual and growing fast!—Matthew Holt

25th Amendment Still Not the Right Response to a Mentally Ill Trump

By MIKE MAGEE

On May 16, 2017 New York Times conservative columnist, Russ Douthat, wrote “The 25th Amendment Solution for Removing Trump.” 

That column was the starting point for a Spring course I taught on the 25th Amendment at the President’s College in Hartford, CT. I will not summarize the entire course here, but would like to emphasize four points:

  1. The American public was adequately warned (now 7 years ago) of the risk that Trump represented to our nation and our democracy.
  2. Douthat’s piece triggered a journalistic debate which I summarize below with four slides drawn from my lectures.
  3. Had Pence and the cabinet chosen to activate the 25th Amendment, as it is written, Trump would have had the right to appeal “his inability”, forcing the Congress to decide whether there was cause to remove the President.
  4. Judging from the later impeachment of Trump in the House, but failure to convict in the Senate, it is unlikely a courageous Pence and Cabinet would have been backed by their own party.

Let’s look at four archived slides from the 2017 lecture, and then discuss our current options in the case of 2024 Trump against Democracy. 

Slide 1. Russ Douthat

        Slide 2. Jamal Greene (in response)

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AI Inside

by KIM BELLARD

Well: 2024. I’m excited about the Paris Olympics, but otherwise I’d be just as happy to sleep through all the nonsense that the November elections will bring. In any event, I might as well start out talking about one of the hottest topics of 2023 that will get even more so in 2024: AI.

In particular, I want to look at what is being billed as the “AI PC.” 

Most of us have come to know about ChatGPT. Google has Bard (plus DeepMind’s Gemini), Microsoft is building AI into Bing and its other products, Meta released an open source AI, and Apple is building its AI framework. There is a plethora of others. You probably have used “AI assistants” like Alexa or Siri.

What most of the large language model (LLM) versions of AI have in common is that they are cloud-based. What AI PCs offer to do is to take AI down to your own hardware, not dissimilar to how PCs took mainframe computing down to your desktop.  

As The Wall Street Journal tech gurus write in their 2024 predictions in their 2024 predictions:

In 2024, every major manufacturer is aiming to give you access to AI on your devices, quickly and easily, even when they’re not connected to the internet, which current technology requires. Welcome to the age of the AI PC. (And, yes, the AI Mac.)

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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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