By KAT MCDAVITT and LESLIE KIRK

Innsena has made a $100,000 contribution to CancerX, making Innsena the public-private partnership’s first Impact Supporter.

Why? There are few conditions in which the disparity in innovations benefiting underserved communities is more apparent than in the treatment and prevention of cancer.

Patients without insurance are more likely to present with more advanced cancers, and the cancer death rate for people of color is significantly higher than for white patients. More people die from cancer in rural communities than in urban settings. 

In CancerX, we found a community of partners taking on hard problems to equitably deploy innovative solutions that can reduce the risk of, and cure cancer for all patients. Even—and especially—when financial incentives do not otherwise exist for the private sector to solve those problems.  

Innsena is committed to improving equitable access, treatment and outcomes for the most vulnerable among us. We focus on supporting improved outcomes for Medicaid members and underserved communities. The disparity caused by the absence of incentives and funding for innovators to enter the Medicaid market can’t be overstated. 

But innovators, and the investors who fund these pioneers, are exactly what our industry needs to change health outcomes in underserved communities. 

We decided that, if the incentives to innovate in cancer care for vulnerable populations don’t exist, then we would create them. Our financial commitment to CancerX is a step forward that we hope will start a broader movement. 

Our team’s $100,000 contribution will help the team at CancerX to accelerate programs underway—including its effort to improve equity and reduce financial toxicity in cancer care and research—and to more rapidly launch new initiatives. 

We’re particularly proud to support the public-private partnership’s efforts to improve equity and reduce financial toxicity. Cancer deaths are inequitably distributed across the United States—and those patients who do survive are 2.5 times more likely to declare bankruptcy than those without disease. 

Likewise, a key component of CancerX is a start-up accelerator for companies bringing more digital solutions for the treatment and prevention of cancer, with special attention given to organizations that focus on disadvantaged populations. We’re honored to support the start-ups selected for the first CancerX accelerator cohort with both mentorship and financial support. 

And to that end, as individuals, we’ve gone one step further to support start-ups focused on preventing and curing cancer for vulnerable patients. We’ve also partnered with Ben Freeberg and his team at Oncology Ventures to ensure that digital health start-ups innovating for all patients in the oncology space have funding available to advance their causes. 

Innsena is joining more than 150 organizations already working together to make a difference for all patients in the prevention and treatment of cancer. CancerX is co-hosted by the Moffitt Cancer Center and Digital Medicine Society, alongside the US Department of Health and Human Services Office for the National Coordinator for Health Information Technology and Office of the Assistant Secretary for Health. 

We need more innovators working to improve care for the underserved. Join us in supporting CancerX. As a community we’ll make a difference. 

Kat McDavitt is President and founding partner of Innsena. Leslie Kirk is CEO and managing partner of Innsena.

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

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.”

They propose:

We believe nonprofit boards should require their members to take turns serving as “designated contrarians.” When it’s their turn for this role, board members would be responsible for asking critical questions and pushing for deeper debate about organizational decisions.

Their idea draws upon research from Lindred (Lindy) Greer, a professor of organizational behavior then at Stanford GSB and now at Michigan Ross. Her research suggested that teams need a “skilled contrarian” to improve its effectiveness. “It’s important for teams to have a devil’s advocate who is constructive and careful in communication, who carefully and artfully facilitates discussion,” Professor Ross concluded.

Her research, conducted with Ruchi Sinha, Niranjan Janardhanan, Donald Conlon, and Jeff Edwards, found that teams with a lone dissenter outperformed teams with no dissenters, or teams where everyone dissents. The key, they believe, was not to create conflict but to help identify differences and resolve resulting conflicts in non-confrontational ways.

Professors Reiser and Hill worry that “board members often fail to ask hard questions and challenge the organization’s paid staff – especially when there are more than a dozen or so people serving as directors.” They might assume everyone shares their “good intentions,” or they might just be uncomfortable “rocking the boat.”

I would argue that the same is true throughout most organizations, whether in the C-Suite or in the rest of workforce. Who is asking the hard questions?

Professors Reiser and Hill believe they have a solution:

We propose that trustees take turns being a designated contrarian, temporarily becoming a devil’s advocate obliged to challenge proposed board actions.

To be clear, they wouldn’t be naysayers out to block everything. They would instead ask probing questions and offer feedback on reports by executives and officers. They would also initiate critical discussions by challenging conventional wisdom.

The goal, they say, “would be to encourage debate and reflection about the nonprofit’s decisions, slowing – or halting, if necessary – the approval of business as usual.” Again, there’s nothing unique about non-profits or even about boards here.

If you have a team, a management staff, a C-Suite, a board (non-profit or not), or a federal agency, you need a contrarian. Someone who is not afraid to point out when, as they say, the emperor has no clothes. Who is not afraid to ask those hard questions, to rock that boat. Who realizes the status quo is not only not good enough but also never is going to last.

Organizations whose boats don’t get rocked enough are likely to capsize sooner or later.

Picking the right person(s) is crucial. Someone who is too abrasive will just create more conflict and will eventually get frozen out. On the other hand, as Professor Reiser points out: “Serving a term as contrarian will not magically transform a passive and deferential person into someone who actively challenges dominant voices or forcefully advocates alternatives. And directors wearing the contrarian hat may be too easily discounted if others perceive them as merely mouthing their assigned lines.”

It’s not a role that anyone can fill, or that everyone should, but a role that is important which someone does.

———

It has been said that organizations that need innovation units or a Chief Innovation Officer aren’t truly innovative; it needs to be baked into the culture. Similarly, needing a Chief Customer Experience Officer means customer experience is not integral to the mission. If HHS needs a Chief Competition Officer or a Chief Patient Officer, it is validation that HHS has been coopted by the special interests that healthcare is full of, and those interests aren’t primarily about patients. We need to reflect upon that; simply naming those Officers won’t be enough.

By the same token, if your organization needs a Chief Contrarian or designated contrarians, that means it doesn’t encourage healthy dissent or seek ideas that don’t reflect existing paradigms. That’s a problem.

I am, I have to admit, something of a contrarian by nature. I never had an official role as such, but I never shied away from speaking up (even when it wasn’t in my best career interests).  But, boy, if I’d had the chance to be a Chief Contrarian or a designated contrarian, I’d have loved it!

Kim is a former emarketing exec at a major Blues plan, editor of the late & lamented Tincture.io, and now regular THCB contributor

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.

Joining Matthew Holt (@boltyboy) on #THCBGang on Thursday October 26 at 1pm PST 4pm EST were delivery & platform expert Vince Kuraitis (@VinceKuraitis); author & ponderer of odd juxtapositions Kim Bellard (@kimbbellard); futurist Ian Morrison (@seccurve); and our special guest was Kat McDavitt(@katmcdavitt) President of Innsena.

The video is below. If you’d rather listen to the episode, the audio is preserved from Friday as a weekly podcast available on our iTunes & Spotify channels