Category: Health Policy

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

Jan 26, 2024

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.”

Zombie Viruses of the Permafrost

Jan 24, 2024

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.

Au Contraire

Jan 17, 2024

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.”

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

Jan 8, 2024

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:

The American public was adequately warned (now 7 years ago) of the risk that Trump represented to our nation and our democracy.
Douthat’s piece triggered a journalistic debate which I summarize below with four slides drawn from my lectures.
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.
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)

The US needs a Chief Patient Officer

Jan 4, 2024

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.

A Speech For The Ages – 83 Years Ago This Christmas

Dec 22, 2023

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.

A Place to Call Home

Dec 18, 2023

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.

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

Dec 11, 2023

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.

Lead Pipe Cinch

Dec 7, 2023

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.

How Patient Activation Made It Possible to Thrive with Kidney Disease

Nov 27, 2023

By DAVE WHITE

It had been 10 years since I’d seen a doctor when I arrived at the Emergency Room at George Washington University Hospital in October 2009. I was able to climb the first flight of stairs, but after I froze on the second, they brought me in on a wheelchair.

That was the first time I heard the dreaded words, “Your kidneys aren’t working.” I was put on dialysis immediately, and my life transformed into a series of tests and procedures. But even after three weeks at the hospital, it didn’t sink in that there was no cure.

I checked most risk factors for kidney disease: I ate the wrong foods, smoked more than a pack of cigarettes a day, drank too much beer, and didn’t exercise much. But the biggest risk to my health was not getting regular check-ups. I didn’t think I needed them, or that I had a part to play in my own health.

I hated going to dialysis three times a week. Since I could no longer work, the $20 cab fare each way was an expense my wife and I struggled to afford, so I skipped often. When a nurse warned me that if I missed three sessions in a row I would have to be dialyzed at the hospital, I decided this meant I could get away with one session a week.

The care plan I received from my providers called me “non-compliant” seven times. I felt they had written me off as a lost cause and saw no point in working with them either.

Finally, I was called into a meeting with six nurses, social workers, and clinic staff. When I said I skipped dialysis because money was tight, the charge nurse said, “We’re going to get you resources for transit and help you plan good meals.”

I was shocked – I didn’t know how support services worked. The nurse continued “But you have to do your part or you’re not going to be around much longer.”

No one had said this in such blunt terms before. I left the room, went home, looked at myself in the bathroom mirror, and said, “They’re right. You can do better. You have to do better.”

Fourteen years later, I am lucky to be alive to see the Centers for Medicare and Medicaid Services (CMS) include measures that place the patient’s voice at the center of clinical care. CMS has recognized that supporting patient activation, building a person’s knowledge, skills, and confidence around managing their health, and addressing social needs is critical to helping people like me get the support we need to get and stay healthy.