Who Could (Possibly) Be the Ideal “Chief Patient Officer”?  (And Other Ideas that Sound Better on Paper than in Practice) – The Health Care Blog – GWC Mag

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.”

Critical document registries are now built into several large HIEs but these are generally invisible to Mobile Medical professionals. No less an enabler of interoperability than Amazon Web Services has acknowledged that caring for underserved patients must incorporate Mobile Medicine because the poorest in America get much of their care from ambulance services. Leading medical directors and the executive director of National POLST have cited interoperability as a key to empowering Responders to best care for our loved ones when seconds count. Yet when the “Health Tech Talk Show” hones in on discussions about public insurance and safety net medicine—“I heard ‘Medicaid is hard,’ more times than I can count. Public health? Barely a word…

Individuals on Medicaid and the underserved make up nearly 25% of the country. Public health? SUD is a public health issue. Behavioral health is a public health issue. Maternal health is a public health issue. CANCER Is [sic] a public health issue. Public health is more than covid tests and flinging around vaccines and we should treat it as such.”—ambulances are not mentioned once. 

Fire and ambulance services are successfully closing information sharing gaps, but they remain left out of the advocacy efforts—and worse, they end up as an unintended target. Mobile Medicine could be a case study in the power of sharing clinical insights in real-time to do what is best for the patient and the healthcare ecosystem simultaneously. Instead, advocacy efforts in the name of interoperability have traversed a path—twice, now—that risks blocking Mobile Medical professionals from participating in the modern healthcare ecosystem, to the detriment of patients, families and the agencies themselves.

This first such instance occurred when the “Health Tech Talk Show” fanned the flames of the Health Data Utility (HDU) movement. In America and globally, ambulance services are unique, as the only health care providers that routinely engage Unknown Patients (patients who need care while unconscious, unable to communicate, and/or “altered mental status” so one cannot trust their self-assessment). Mobile Medical professionals routinely engage patients in places like alleyways and in abandoned basements. It is worth noting that none of the above pertains necessarily to emergency care, as Mobile Medical professionals engage the most severely ill and underserved chronic care patients wherever they are, and that frequently is on the streets. 

Estimates of the size of the non-emergency medical transport sector range from par to double that of emergency medical transportation. Yet Mobile Medical professionals are largely shut out of the national healthcare data interoperability discussion because they don’t document in HL7-based data systems; they use a different, essential, standard called the National EMS Information System. 

The Office of the National Coordinator of Healthcare IT (ONC) has focused on bringing Mobile Medical data into the broader health data fold, including most recently by holding the second EMS data summit concurrently with the 2023 ONC annual meeting. The movement toward implementation of Health Data Utilities (HDU) risks undoing this critical progress to date, careening Mobile Medical professionals toward second-class status. The advocates of this approach do not appear to be considering its downstream effects: HDUs risks devolving Mobile Medical professionals into shoppers on Christmas Day who are forced to watch sales happening inside the store, while standing outside in the snow. 

Put another way: “Where the HDUs do not currently consume Mobile Medical data, the ambulance, fire and CP/MIH agencies will stay shut out until outsized pressure forces a change (say, an adverse encounter that could that have avoided if the crew had had real-time access to the more complete information in real-time).”

More recently, the Health Tech Talk Show team has begun advancing the notion that America needs a “Chief Patient Officer” (they even went so far as to propose a candidate). Like the HDU concept, this proposal is risky for Mobile Medicine professionals, which is why this author is speaking up. It obviates the reality that, for many, ambulance-based care is nothing short of a lifeline—an entryway to the healthcare ecosystem where no other exists. In their article for The Health Care Blog, Lisa Bari and Kat McDavitt write that “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.” What about Americans whose needs and challenges are so basic, fundamental, and neglected over time that they’re utterly irrelevant to corporate interests?

There are many such people, and they deserve attention. 

They receive it from caregivers who work in ambulances.

Put another way: What realistic hope is there for a white, educated, socioeconomically “just fine,” city (or countryside) dwelling caregiver hope to muster sufficient empathy for the reality of being a single parent of color, whose child has a major disability, who lives far away from everything that they need to care for their kid? What does it feel like to be a Black woman, who is pregnant, short of breath, living in a one room apartment that smells of feces, whose doctor is all the way over there while she’s in an ambulance going nowhere in rush hour traffic? (Note: this is no theoretical situation—I did a ridealong with just such a patient in Pittsburgh, Pennsylvania). How can one person purport to represent America’s “So Many Patients”, channeling the challenges of race, lack of access to care, language, disability, religion, understanding of healthcare, fear of maltreatment, and more?

If one purports to advocate seriously for a Chief Patient Officer…where will they come from? Will they speak English as a second (or third) language? Will they have a child, spouse, or parent with a mortal disability (or must they have already lost one or more of the above)? Will they be straight, gay, intersex, or transgender? Must they have processed an end-of-life medical order for themselves or for a loved one, to know what it’s like to contemplate the ethics of demise? Must they have an implant that failed, or “get” why patients use ambulances as doctor’s offices? 

“We need a Chief Patient Officer” makes a catchy bumper sticker message, just like “QHINs aren’t real” makes a snazzy alien-themed shirt. But in reality, lightheartedness about life-and-death issues can feel disrespectful of the minutes, hours, and lifetimes that are being invested in making such necessities a reality. The varieties of human experience are so diverse that to suggest enough empathy can be found in one person—anywhere but in a committee of Chief Patient Officers—denigrates the struggle that ambulance-based care providers face in their mission to bring care to patients, families, and communities that lack options but face critical needs. 

Worse yet is that Mobile Medical professionals can end up with the short end of the stick: not just kept outside the glass, pining for a seat at Healthcare’s Table at the Future, but indeed, being blamed for the lack of such tools, made to look like Luddites. This author hopes we will collectively adjust our investments of time and passion into spreading ideas that make things easier—more effective in terms of time and medicine—for those who work to deliver care, with fewer resources than they need, to those who lack the basics.

Jonathan Feit is the CEO of Beyond Lucid Technologies