In modern America, “the bread” has changed. It is no longer found in a Parisian bakery but in a community health center, a pharmacy, or a hospital admissions office. It is insulin, chemotherapy, biologics and mental health care. Access to these essentials increasingly depends not only on medical need but also on administrative thresholds, shifting eligibility rules, and delay mechanisms that quietly determine who waits, who deteriorates, and who absorbs financial collapse as collateral damage.

When Illness Becomes Economic Collapse

Medical debt has become the most visible expression of this misalignment. More than 100 million Americans now carry health-related debt, much of it incurred despite having health insurance. For millions of Americans, a single diagnosis can be enough to destabilize their household finances permanently. Medical debt damages credit, constrains housing and determines employment options. It fuels chronic stress that contributes to poorer health outcomes. It punishes people not for recklessness, but for uninvited illness.

The consequences extend well beyond ledgers. Individuals carrying medical debt are significantly more likely to delay or avoid needed care, skip prescriptions or postpone follow-up visits. Families report cutting back on food, utilities or rent to manage medical bills. In this way, illness becomes an economic accelerant, pushing people already close to the edge into deeper instability. Survival may be possible, but recovery, both financially, emotionally, and psychologically, becomes elusive.

For patients with serious illnesses such as cancer, autoimmune disease, or rare conditions, the stakes are far higher. Financial toxicity has been associated with increased mortality among cancer patients, as out-of-pocket costs lead individuals to delay treatment or abandon therapy altogether. This occurs at the same time that medical innovation has never been more promising. Targeted therapies, biologics, and personalized medicine are extending life and improving quality of life. The contradiction is stark: scientific progress accelerates while access narrows.

How Administration Became a Barrier to Care

At the center of this contradiction sits prior authorization. Originally intended as a utilization management tool, it has evolved into a pervasive barrier to timely care. Physicians report that prior authorization routinely delays necessary treatment and consumes hours of clinical time, while patients wait often in pain, sometimes in medical crisis. In oncology, delays can mean missed treatment windows. In neurology, they can mean needless pain or irreversible decline. In mental health, they can mean crisis escalation and hospitalization.

Denial rarely arrives as a clear refusal. More often, whether intentional or not, care is slowed until the patient deteriorates, disengages, or pays out of pocket. The system follows the rule, but the consequence is the weight that the patient carries. What was designed as stewardship increasingly functions as deterrence, too often transferring the burden of cost control to those least equipped to carry it.

Public programs meant to stabilize access have not been immune to this dynamic. Medicaid and Medicare, established as pillars of the American safety net in 1964, now operate amid growing instability. Eligibility thresholds are a moving target. Redetermination processes remove coverage for administrative reasons, rather than due to changes in need. Patients in active treatment lose coverage mid-course, forcing physicians to scramble and patients to panic. Coverage churn disrupts care and erodes trust, encouraging people to delay engagement with a system that is no longer structured to protect them when they are most vulnerable.

Taken together, medical debt, administrative delay, and coverage instability are not isolated policy failures but a systemic pattern. The modern sick-care system excels at episodic intervention but struggles with continuity, predictability, and lived experience. It measures success in transactions rather than trajectories, focusing on efficiency rather than consequences. Innovation thrives, while access to these medicines frays.

Violence is Never Justified

Hugo warned of where this leads. When systems feel unreachable, when appeals are endless and context is stripped away, frustration hardens into despair—the search for bread. Despair does not always erupt visibly. More often, people delay care not because they are indifferent to their health, but because they are afraid of what seeking care will cost them financially and emotionally.

Violence is never justified. The murder of health insurance executive Brian Thompson must be condemned without qualification. It is a human tragedy, not a symbol, and should never be rationalized. At the same time, refusing to examine the conditions that fuel public rage that applaud the killer is a warning sign about how people experience health care as an institution that governs life-and-death decisions while feeling increasingly inaccessible and unaccountable.

In Les Misérables, bread was enough to keep Jean Valjean’s family alive, but it was the weight of rigid systems that nearly broke him. That distinction matters today. When access to health care is treated as something to be rationed through delay, instability, and administrative friction, survival may still be possible, but long-term stability is put at risk. Medical debt, coverage churn, and seemingly weaponized delays do not merely inconvenience patients; they reshape how people relate to illness, the government, and companies, and allocate care.

The path forward does not begin with sanctifying health care, nor with vilifying those who work within it. It starts with recalibration. Administrative tools must serve care rather than obstruct it. Eligibility for public programs must offer predictability, not whiplash. Access must be treated as infrastructure, something that must function under stress, not a privilege rationed through complexity. America’s health-care story is still being written. Its outcome will not be determined solely by innovation or cost control, but by whether systems are designed to work when people are most vuln

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Erica Hayes, 40, has not felt healthy since November 2020 when she first fell ill with covid.

Hayes is too sick to work, so she has spent much of the last four years sitting on her beige couch, often curled up under an electric blanket.

“My blood flow now sucks, so my hands and my feet are freezing. Even if I’m sweating, my toes are cold,” said Hayes, who lives in Western Pennsylvania. She misses feeling well enough to play with her 9-year-old son or attend her 17-year-old son’s baseball games.

Along with claiming the lives of 1.2 million Americans, the covid-19 pandemic has been described as a mass disabling event. Hayes is one of millions of Americans who suffer from long covid. Depending on the patient, the condition can rob someone of energy, scramble the autonomic nervous system, or fog their memory, among many other symptoms.

In addition to the brain fog and chronic fatigue, Hayes’ constellation of symptoms includes frequent hives and migraines. Also, her tongue is constantly swollen and dry.

“I’ve had multiple doctors look at it and tell me they don’t know what’s going on,” Hayes said about her tongue. 

Estimates of prevalence range considerably, depending on how researchers define long covid in a given study, but the Centers for Disease Control and Prevention puts it at 17 million adults.

Despite long covid’s vast reach, the federal government’s investment in researching the disease — to the tune of $1.15 billion as of December — has so far failed to bring any new treatments to market. 

This disappoints and angers the patient community, who say the National Institutes of Health should focus on ways to stop their suffering instead of simply trying to understand why they’re suffering.

“It’s unconscionable that more than four years since this began, we still don’t have one FDA-approved drug,” said Meighan Stone, executive director of the Long COVID Campaign, a patient-led advocacy organization. Stone was among several people with long covid who spoke at a workshop hosted by the NIH in September where patients, clinicians, and researchers discussed their priorities and frustrations around the agency’s approach to long-covid research.

Some doctors and researchers are also critical of the agency’s research initiative, called RECOVER, or Researching COVID to Enhance Recovery. Without clinical trials, physicians specializing in treating long covid must rely on hunches to guide their clinical decisions, said Ziyad Al-Aly, chief of research and development with the VA St Louis Healthcare System.

“What [RECOVER] lacks, really, is clarity of vision and clarity of purpose,” said Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.

Now the NIH is starting to determine how to allocate an additional $662 million of funding for long-covid research, $300 million of which is earmarked for clinical trials. These funds will be allocated over the next four years.

At the end of October, RECOVER issued a request for clinical trial ideas that look at potential therapies, including medications, saying its goal is “to work rapidly, collaboratively, and transparently to advance treatments for Long COVID.”

This turn suggests the NIH has begun to respond to patients. This has stirred cautious optimism among those who say that the agency’s approach to long covid has lacked urgency in the search for effective treatments.

Stone calls this $300 million a down payment. She warns it’s going to take a lot more money to help people like Hayes regain some degree of health.

“There really is a burden to make up this lost time now,” Stone said.

The NIH told KFF Health News and NPR via email that it recognizes the urgency in finding treatments. But to do that, there needs to be an understanding of the biological mechanisms that are making people sick, which is difficult to do with post-infectious conditions.

That’s why it has funded research into how long covid affects lung function, or trying to understand why only some people are afflicted with the condition.

Good Science Takes Time

In December 2020, Congress appropriated $1.15 billion for the NIH to launch RECOVER, raising hopes in the long-covid patient community.

Then-NIH Director Francis Collins explained that RECOVER’s goal was to better understand long covid as a disease and that clinical trials of potential treatments would come later.

According to RECOVER’s website, it has funded eight clinical trials to test the safety and effectiveness of an experimental treatment or intervention. Just one of those trials has published results.

On the other hand, RECOVER has supported more than 200 observational studies, such as research on how long covid affects pulmonary function and on which symptoms are most common. And the initiative has funded more than 40 pathobiology studies, which focus on the basic cellular and molecular mechanisms of long covid.

RECOVER’s website says this research has led to crucial insights on the risk factors for developing long covid and on understanding how the disease interacts with preexisting conditions.

It notes that observational studies are important in helping scientists to design and launch evidence-based clinical trials.

Good science takes time, said Leora Horwitz, the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University. And long covid is an “exceedingly complicated” illness that appears to affect nearly every organ system, she said. 

This makes it more difficult to study than many other diseases. Because long covid harms the body in so many ways, with widely variable symptoms, it’s harder to identify precise targets for treatment.

“I also will remind you that we’re only three, four years into this pandemic for most people,” Horwitz said. “We’ve been spending much more money than this, yearly, for 30, 40 years on other conditions.”

NYU received nearly $470 million of RECOVER funds in 2021, which the institution is using to spearhead the collection of data and biospecimens from up to 40,000 patients. Horwitz said nearly 30,000 are enrolled so far.

This vast repository, Horwitz said, supports ongoing observational research, allowing scientists to understand what is happening biologically to people who don’t recover after an initial infection — and that will help determine which clinical trials for treatments are worth undertaking.

“Simply trying treatments because they are available without any evidence about whether or why they may be effective reduces the likelihood of successful trials and may put patients at risk of harm,” she said.

Delayed Hopes or Incremental Progress?

The NIH told KFF Health News and NPR that patients and caregivers have been central to RECOVER from the beginning, “playing critical roles in designing studies and clinical trials, responding to surveys, serving on governance and publication groups, and guiding the initiative.”

But the consensus from patient advocacy groups is that RECOVER should have done more to prioritize clinical trials from the outset. Patients also say RECOVER leadership ignored their priorities and experiences when determining which studies to fund.

RECOVER has scored some gains, said JD Davids, co-director of Long COVID Justice. This includes findings on differences in long covid between adults and kids.

But Davids said the NIH shouldn’t have named the initiative “RECOVER,” since it wasn’t designed as a streamlined effort to develop treatments.

“The name’s a little cruel and misleading,” he said.

RECOVER’s initial allocation of $1.15 billion probably wasn’t enough to develop a new medication to treat long covid, said Ezekiel J. Emanuel, co-director of the University of Pennsylvania’s Healthcare Transformation Institute.

But, he said,  the results of preliminary clinical trials could have spurred pharmaceutical companies to fund more studies on drug development and test how existing drugs influence a patient’s immune response.

Emanuel is one of the authors of a March 2022 covid roadmap report. He notes that RECOVER’s lack of focus on new treatments was a problem. “Only 15% of the budget is for clinical studies. That is a failure in itself — a failure of having the right priorities,” he told KFF Health News and NPR via email.

And though the NYU biobank has been impactful, Emanuel said there needs to be more focus on how existing drugs influence immune response.

He said some clinical trials that RECOVER has funded are “ridiculous,” because they’ve focused on symptom amelioration, for example to study the benefits of over-the-counter medication to improve sleep. Other studies looked at non-pharmacological interventions, such as exercise and “brain training” to help with cognitive fog.

People with long covid say this type of clinical research contributes to what many describe as the “gaslighting” they experience from doctors, who sometimes blame a patient’s symptoms on anxiety or depression, rather than acknowledging long covid as a real illness with a physiological basis.

“I’m just disgusted,” said long-covid patient Hayes. “You wouldn’t tell somebody with diabetes to breathe through it.”

Chimére L. Sweeney, director and founder of the Black Long Covid Experience, said she’s even taken breaks from seeking treatment after getting fed up with being told that her symptoms were due to her diet or mental health.

“You’re at the whim of somebody who may not even understand the spectrum of long covid,” Sweeney said.

Insurance Battles Over Experimental Treatments

Since there are still no long-covid treatments approved by the Food and Drug Administration, anything a physician prescribes is classified as either experimental — for unproven treatments — or an off-label use of a drug approved for other conditions. This means patients can struggle to get insurance to cover prescriptions.

Michael Brode, medical director for UT Health Austin’s Post-COVID-19 Program — said he writes many appeal letters. And some people pay for their own treatment.

For example, intravenous immunoglobulin therapy, low-dose naltrexone, and hyperbaric oxygen therapy are all promising treatments, he said.

For hyperbaric oxygen, two small, randomized controlled studies show improvements for the chronic fatigue and brain fog that often plague long-covid patients. The theory is that higher oxygen concentration and increased air pressure can help heal tissues that were damaged during a covid infection.

However, the out-of-pocket cost for a series of sessions in a hyperbaric chamber can run as much as $8,000, Brode said.

“Am I going to look a patient in the eye and say, ‘You need to spend that money for an unproven treatment’?” he said. “I don’t want to hype up a treatment that is still experimental. But I also don’t want to hide it.”

There’s a host of pharmaceuticals that have promising off-label uses for long covid, said microbiologist Amy Proal, president and chief scientific officer at the Massachusetts-based PolyBio Research Foundation. For instance, she’s collaborating on a clinical study that repurposes two HIV drugs to treat long covid.

Proal said research on treatments can move forward based on what’s already understood about the disease. For instance, she said that scientists have evidence — partly due to RECOVER research — that some patients continue to harbor small amounts of viral material after a covid infection. She has not received RECOVER funds but is researching antivirals.

But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long covid — clinical trials are needed. And that requires money.

Hayes said she would definitely volunteer for an experimental drug trial. For now, though, “in order to not be absolutely miserable,” she said she focuses on what she can do, like having dinner with her family.

At the same time, Hayes doesn’t want to spend the rest of her life on a beige couch. 

RECOVER’s deadline to submit research proposals for potential long-covid treatments is Feb. 1.

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“First 100 days,” said Means, a former consultant to Big Pharma who uses the social platform X to focus attention on chronic disease. “What should be done to reform the FDA?”

The question was more than rhetorical. Means is among a cadre of health business leaders and nonmainstream doctors who are influencing President Donald Trump’s focus on health policy.

Trump’s return to the White House has given Means and others in this space significant clout in shaping the nascent health policies of the new administration and its federal agencies. It’s also giving newfound momentum to “Make America Healthy Again,” or MAHA, a controversial movement that challenges prevailing thinking on public health and chronic disease.

Its followers couch their ideals in phrases like “health freedom” and “true health.” Their stated causes are as diverse as revamping certain agricultural subsidies, firing National Institutes of Health employees, rethinking childhood vaccination schedules, and banning marketing of ultra-processed foods to children on TV.

Public health leaders say the emerging Trump administration’s interest in elevating the sometimes unorthodox concepts could be catastrophic, eroding decades of scientific progress while spurring a rise in preventable disease. They worry the administration’s support could weaken trust in public health agencies.

Georges Benjamin, executive director of the American Public Health Association, said he welcomes broad intellectual scientific discussion but is concerned that Trump will parrot untested and unproven public health ideas he hears as if they are fact.

Experience has shown that people with unproven ideas will have his ear and his “very large bully pulpit,” he said. “Because he’s president, people will believe he won’t say things that aren’t true. This president, he will.”

But those in the MAHA camp have a very different take. They say they have been maligned as dangerous for questioning the status quo. The election has given them an enormous opportunity to shape politics and policies, and they say they won’t undermine public health. Instead, they say, they will restore trust in federal health agencies that lost public support during the pandemic.

“It may be a brilliant strategy by the right,” said Peter McCullough, a cardiologist who has come under fire for saying covid-19 vaccines are unsafe. He was describing some of the election-season messaging that mainstreamed their perspectives. “The right was saying we care about medical and environmental issues. The left was pursuing abortion rights and a negative campaign on Trump. But everyone should care about health. Health should be apolitical.”

The movement is largely anti-regulatory and anti-big government, whether concerning raw milk or drug approvals, although implementing changes would require more regulation. Many of its concepts cross over to include ideas that have also been championed by some on the far left.

Robert F. Kennedy Jr., an anti-vaccine activist Trump has nominated to run the Department of Health and Human Services, has called for firing hundreds of people at the National Institutes of Health, removing fluoride from water, boosting federal support for psychedelic therapy, and loosening restrictions on raw milk, consumption of which can expose consumers to foodborne illness. Its sale has prompted federal raids on farms for not complying with food safety regulations.

Means has called for top-down changes at the U.S. Department of Agriculture, which he says has been co-opted by the food industry.

Though he himself is not trained in science or medicine, he has said people had almost no chance of dying of covid-19 if they were “metabolically healthy,” referring to eating, sleeping, exercise, and stress management habits, and has said that about 85% of deaths and health care costs in the U.S. are tied to preventable foodborne metabolic conditions.

A co-founder of Truemed, a company that helps consumers use pretax savings and reimbursement programs on supplements, sleep aids, and exercise equipment, Means says he has had conversations behind closed doors with dozens of members of Congress. He said he also helped bring RFK Jr. and Trump together. RFK Jr. endorsed Trump in August after ending his independent presidential campaign.

“I had this vision for a year, actually. It sounds very woo-woo, but I was in a sweat tent with him in Austin at a campaign event six months before, and I just had this strong vision of him standing with Trump,” Means said recently on the Joe Rogan Experience podcast.

The former self-described never-Trumper said that, after Trump’s first assassination attempt, he felt it was a powerful moment. Means called RFK Jr. and worked with conservative political commentator Tucker Carlson to connect him to the former president. Trump and RFK Jr. then had weeks of conversations about topics such as child obesity and causes of infertility, Means said.

“I really felt, and he felt, like this could be a realignment of American politics,” Means said.

He is joined in the effort by his sister, Casey Means, a Stanford University-trained doctor and co-author with her brother of “Good Energy,” a book about improving metabolic health. The duo has blamed Big Pharma and the agriculture industry for increasing rates of obesity, depression, and chronic health conditions in the country. They have also raised questions about vaccines.

“Yeah, I bet that one vaccine probably isn’t causing autism, but what about the 20 that they are getting before 18 months,” Casey Means said in the Joe Rogan podcast episode with her brother.

The movement, which challenges what its adherents call “the cult of science,” gained significant traction during the pandemic, fueled by a backlash against vaccine and mask mandates that flourished during the Biden administration. Many of its supporters say they gained followers who believed they had been misled on the effectiveness of covid-19 vaccines.

In July 2022, Deborah Birx, covid-19 response coordinator in Trump’s first administration, said on Fox News that “we overplayed the vaccines,” although she noted that they do work.

Anthony Fauci, who advised Trump during the pandemic, in December 2020 called the vaccines a game changer that could diminish covid-19 the way the polio vaccine did for that disease.

Eventually, though, it became evident that the shots don’t necessarily prevent transmission and the effectiveness of the booster wanes with time, which some conservatives say led to disillusionment that has driven interest in the health freedom movement.

Federal health officials say the rollout of the covid vaccine was a turning point in the pandemic and that the shots lessen the severity of the disease by teaching the immune system to recognize and fight the virus that causes it.

Postelection, some Trump allies such as Elon Musk have called for Fauci to be prosecuted. Fauci declined to comment.

Joe Grogan, a former director of the White House’s Domestic Policy Council and assistant to Trump, said conservatives have been trying to articulate why government control of health care is troublesome.

“Two things have happened. The government went totally overboard and lied about many things during covid and showed no compassion about people’s needs outside of covid,” he said. “RFK Jr. came along and articulated very simply that government control of health care can’t be trusted, and we’re spending money, and it isn’t making anyone healthier. In some instances, it may be making people sicker.”

The MAHA movement capitalizes on many of the nonconventional health concepts that have been darlings of the left, such as promoting organic foods and food as medicine. But in an environment of polarized politics, the growing prominence of leaders who challenge what they call the cult of science could lead to more public confusion and division, some health analysts say.

Jeffrey Singer, a surgeon and senior fellow at the Cato Institute, a libertarian public policy research group, said in a statement that he agrees with RFK Jr.’s focus on reevaluating the public health system. But he said it comes with risks.

“I am concerned that many of RFK Jr.’s claims about vaccine safety, environmental toxins, and food additives lack evidence, have stoked public fears, and contributed to a decline in childhood vaccination rates,” he said.

Measles vaccination among kindergartners in the U.S. dropped to 92.7% in the 2023-24 school year from 95.2% in the 2019-20 school year, according to the Centers for Disease Control and Prevention. The agency said that has left about 280,000 kindergartners at risk.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Ignoring food’s role in health denies its benefits and risks related to the lack of it. The current expression is not just implying that food is a pharmaceutical (which it would appear to be) but that prescribing food is a medical necessity.

The long-term effects of COVID-19 are adding to the yearly death toll from diet-related chronic diseases in the US, which already stands at about one million. In the United States, malnutrition and chronic diseases such as type 2 diabetes, cardiovascular disease (CVD), obesity, and certain malignancies are closely linked to poor dietary habits, making them the primary cause of death.

Among individuals in the United States, about 40% have pre-diabetes, and 11.3% have diabetes; most of these instances are type 2 diabetes. Around 37% of the U.S. population, or 126.9 million people aged 20 and more, will be living with cardiovascular disease in 2022. In 2021, there were 695,000 fatalities in the United States because of CVD, making it the top cause of death for both men and women.

Food Pharmacies

The food pharmacy is one new program model that aims to improve people’s diets by expanding their access to and consumption of healthy foods, especially produce. According to the available studies on the food pharmacy model’s effectiveness, these programs have helped patients better understand nutrition and overcome obstacles to healthy eating. As a result, they may have a major influence on health outcomes connected to diet.

Nevertheless, there has been a dearth of thorough research techniques and limited efforts to assess these programs’ efficacy. To properly evaluate the long-term impacts of food pharmacy programs on healthy eating and diet-related health outcomes, additional study is required. But the current evidence provides more than food for thought on the topic. How is this concept implemented?

Therapeutic meals are meals specifically designed to meet medical needs, and the food as medicine initiative also includes prescriptions for healthy food, produce, and other foods. They are usually supported by healthcare, the government, or charitable organizations, administered by clinicians through the healthcare system, and patients pay nothing or very little for them. But these programs are limited to specific areas of the world.

Researchers identified 32 papers in the literature examining food as medicine interventions using a PubMed database search and by polling a network of international colleagues. Several instances were located in other Western countries, although the majority were in the US. Other countries that contributed were Canada, the UK, and Australia. Brazil, Mexico, Germany, Ireland, and Finland did not have any. Philanthropic funding, rather than institutional or organizational backing, was crucial for the majority of activities. Statistics on the health effects of food-as-medicine programs were inconsistently available in the scholarly literature, reflecting these endeavors’ relative newness.

How Do They Work?

Located in Boston Medical Center! Founded in 2001, the Food Pantry dedicates itself to assisting low-income patients in overcoming nutrition-related illnesses and undernourishment. The Food Pantry serves as a bridge between patients and healthcare providers such as dietitians and doctors. Doctors at BMC clinics provide food prescriptions to improve patient health. Patients having cancer, HIV/AIDS, high blood pressure, diabetes, obesity, cardiovascular disease, and other long-term illnesses frequently visit the Pantry.

When it comes to nutrition, the goal of the food pharmacies at Children’s Hospital of Philadelphia is to help families struggling to put food on the table. They strive to ensure that families have access to the food and financial resources they require by providing direct grocery delivery to their homes and offering one-on-one resource navigation. Grocery delivery, financial consulting, and free fruit markets are a few of the programs provided because of partnerships with local businesses and organizations. Families who sign up for the Food Pharmacy program get free groceries for six months.

Another program that integrates medicine and food is at Tufts University. The Food Is Medicine launched this university-wide initiative at Tufts University’s Friedman School of Nutrition Science and Policy. Its goal is to improve health care by implementing scalable food-based interventions. Interventions include nutritional meals, doctor education, and improved clinical care for diet-related illnesses.

The University of Utah Health’s response to food insecurity is the Food Pharmacy program. This initiative is a component of the larger Driving Out Diabetes effort. In late summer of 2020, the program was initially offered. Its goal is to help those in the community who are food insecure and dealing with long-term health issues related to nutrition.

The food pharmacy is a trailer that can be moved and has all the necessary equipment for food service. Patients with a meal prescription from their clinician have access to a large selection of nutritious food options held by the pharmacy.

Eligible individuals with valid referrals or prescriptions can pick up meals from the trailer at two sites during business hours.

The value of nutritious foods and meals cannot be overstated as we see the relationship between nutrition and disorders of physical and mental health. In addition to providing healthful foods, these programs also encourage people to educate themselves regarding what they should eat; in addition, the programs, in the long run, can save government money on treating illnesses resulting from poor nutrition. One of the prime examples of these illnesses is obesity worldwide, which is of prime importance in health and medicine.

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Not to take anything away from the Senator’s apparent concern for his constituents’ real, valid frustration with the health system, but is his villain the right one? Is it a fundamental misreading of the facts of the US health ecosystem to believe that there is any one villain in the system at all? The real, underlying reason that the US health system is so fragmented is that the system itself is the problem. And, as it must be, the system will be the source of any viable solution that makes navigating less challenging and more holistically unified.

Stop Blaming Individual Sectors — Look at the Aggregate

High drug prices are just one symptom of a health ecosystem already becoming increasingly fragmented several decades ago. The problem was well-established and recognized when economist Dr. Alain C. Enthoven wrote about it in the American Journal of Managed Care more than a decade ago, positing that inefficient allocation of resources negatively impacted quality, cost of care and medicines, and patient outcomes.

Since then, little has changed. In 2016, FINN Partners released a survey showing that the fragmented health ecosystem was placing an ever-greater burden on patients, the people the system is supposed to protect and serve — and was increasingly failing. Eight years later, the results of this survey will not have changed significantly.

For decades, payers, patients, policymakers, product innovators, and providers turned a blind eye to fragmentation. And while policymakers prefer to spotlight a popular villain — drug cost — the relentless search for villains won’t fix fragmentation. If we attack one piece of the ecosystem rather than look at the problem, we will fail to make meaningful change. While putting pharmaceutical company CEOs under the glare of the Senate HELP spotlight may provide a tremendous election-year photo-op, bipartisan grandstanding is antithetical to addressing the health system’s continued splintering.

If the System Were a Patient with Multi-System Failure, Would We Treat Only One Organ?

We now know beyond a doubt that the health system is fragmented and has a cost impact. It is time to move from this era of fragmentation into the “post-fragmentation” period. Rather than finger-pointing and finding scapegoats, what’s needed is a fuller understanding of how the system works — and fails to work — for the patient. This requires looking at the full picture objectively, without accusation, to understand better how the different players in the system can work together to support the same goal: a health system in which the patient, not the system itself, is the health system’s true beneficiary.

It’s a fact: prescription drug prices in the United States are higher than in other nations, averaging 2.78 times those seen in 33 different countries, according to the February 2024 RAND report. But are pharma companies the sole cause of this patient burden and health-system chaos? Absolutely not: drug costs comprise about 11 percent of the total $4 trillion in US health expenditures. In reality, provider and hospital services total almost half of US health spend (31.4 percent and 20.3 percent respectively).

Fragmentation Adds to Patient Care Burdens and Costs

Fragmentation leads to out-of-control spending across the system. According to a 2018 Commonwealth Fund study, Medicare recipients “with three to four chronic conditions and highly fragmented care are 14 percent more likely to visit the emergency department, and six percent more likely to have a hospital admission.”

If the US health system were a publicly traded corporation, this hemorrhaging of cash would have been decisively stopped years ago. Taken together, the $4 trillion in annual US healthcare costs can be laid on the doorstep of nearly every player in the ecosystem, from insurance companies to PBMs, pharmacies, pharmaceutical companies, government, hospitals, and venture capital, to name a few — even endless consumer demand and neglected preventive care.

Operating with a business-as-usual approach will carry steep costs in money and lives. When the system fails to engage people proactively with heightened risk for heart disease, cancer, diabetes, and other non-communicable illnesses, when it denies patients diagnostic procedures ordered by their physicians, when it shifts patients from working medications to substitute therapies due to a non-medical switch decision, curiously, some parts of the system benefit to the detriment of patients.

These situations shouldn’t be, as the consequences of the current line and the decisions they reward can be dire, leading to rising costs, diminished patient care, and even death. Ultimately, the chaos around care delivery comes from considering patients a necessary fly in the system’s ointment. The patient is not the health system customer. The system is a customer unto itself.

Can We All Focus On Why the System Exists — To Heal Patients?

We recognize the health system’s failings but must also identify its strengths and potential for improvement. This will allow us to reorient our thinking and ask, “Now, what do we do to put the patient back into focus as the ultimate customer and the preferred beneficiary of the system?”

Stanford Physician Ilana Yurkiewicz, an internist, hematologist, and oncologist, in her book Fragmented: A Doctor’s Quest to Piece Together American Health Care, published by W. W. Norton, argues that it’s actually fragmentation that’s the central failure of health care today, resulting in a system that uses more than twice the economic resources other developed nations dedicate toward health and which results in poorer life expectancy outcomes:

“There’s an unspoken assumption when we go to see a doctor: the doctor knows our medical story and is making decisions based on that story. But reality frequently falls short. Medical records vanish when we switch doctors. Critical details of life-saving treatment plans get lost in muddled electronic charts. The doctors we see change according to specialty, hospital shifts, or an insurer’s whims.”

No longer are we debating whether the system is fragmented or not. We must shift our mindsets and drop the mistaken belief that identifying bad players in the ecosystem will fix the problem. With ecosystem fragmentation as the diagnosis, what is the treatment path to better management? This is where “Health System Kinetics” (HSK) enters. HSK fosters collaboration and leverages health information technologies — AI, ChatGPT, GenAI, and LLMs — to create an eco-dynamic that prioritizes people’s well-being and works toward longer, healthier lives.

The Health System is Greater Than Its Sector Parts — Study its Kinetics

Health System Kinetics objectively studies factors and sector-to-sector relationships influencing individual and collective health outcomes. It includes biological, environmental, social, and economic determinants of health. Understanding health system kinetics will allow the health system to evolve for the better, benefiting its stakeholders and addressing gaps and inefficiencies in people’s care by fostering a proactive, positive approach.

Understanding why fragmented care is a system-wide illness is a starting point we passed long ago. Looking at the health ecosystem as an ever-changing aggregate — kinetics — rather than separate sectors at fault is the opportunity to move beyond the present chaos.

Fragmentation goes beyond the left hand, not knowing what the right is doing. Too often, it means that the left hand won’t acknowledge the right hand’s very existence. While rising costs concern everyone, it’s essential to keep our eye on the goal of keeping people healthier at home, out of the hospital, and, if possible, far away from illnesses. To do that, we must address the misalignment of incentives and lack of coordination in the health ecosystem.

Applying Health System Kinetics will allow us to understand better how we can do this to provide better patient care, reduce health professional burnout, and give patients with chronic conditions greater attention. The objective study of the interconnectedness of the parts of the healthc system will promote a better understanding of how these components work together now — and how they can be changed to work better together in the future. Failing to take this approach means we won’t see meaningful change, and that’s not an option.

Do Not Let the Virus Kill its Host — the Health System

We have diagnosed the illness that plagues our health system; it’s a virus called fragmentation. It’s time to examine our biases, behaviors, and business goals. The primary mission is to recognize that we are people — sometimes patients — all seeking to enjoy a healthier life. Suppose fragmentation is the wall that separates us from better access to care. In that case, health professionals in every ecosystem sector can be empowered to pursue their calling with passion and tear down that wall.

Looking for a villain in the health ecosystem, something lawmakers have been doing for the last several election cycles, may be suitable for campaigning but not for progress — not for continued innovation and patient care. Progress can only be achieved when we get past the mindset of the period in which we have been — the period of acknowledging the system is fragmented — and move into the post-fragmentation era, in which we view the system through the lens of health kinetics and eco-dynamics.

When we look at and understand how all parts of the system work together — or fail to –we enter an era in which we no longer debate who’s to blame. Proper understanding will allow us to compromise, adjust our aims, improve our practices, and finally, make changes that remove the health system as its own beneficiary, replacing it with the patient as the system’s customer.

[Special thanks to John Bianchi for his review of this health policy economics article that shifts the conversation from sector-to-sector blame to a forward-looking perspective; to industry friend and mentor John Nosta for encouraging me to put these thoughts into publication and to Dr. Dean and Anne Ornish, pioneers in preventive and consumer empowered health and co-founders of Ornish Lifestyle Medicine.]

The post We Know the Health Ecosystem is Fragmented, Resulting in Rising Costs and Poorer Patient Outcomes, But What Are We Doing About It? appeared first on Medika Life.

Medika Life was given an opportunity to interview four HIMSS leaders – to hear more about plans for the Orlando global meeting and the priorities staff embrace year-round. It was clear that HIMSS staff see their roles as a professional responsibility and largely a public health mission.

Here are the #HIMSS24 Content Highlights:

• HIMSS Connect
• Keynotes
• Policy Issues
• Nursing and Informatics
• Start-Ups & Entrepreneurs

Gil Bashe, Editor-in-Chief, Medika Life: The health industry has many essential trade associations of different types that we know of.  PhRMA and BIO, and to some extent, HIMSS, could be seen that way, but it has grassroots membership. There are certainly very senior people in our industry who are HIMSS members. You could say HIMSS has grassroots and grasstops affiliations.

HIMSS – NOW 125,000 Strong

Christine Buck, Chief Marketing and Communications Officer, HIMSS:  Yes.  That’s right.  Let me offer context for Medika Life readers about HIMSS.  HIMSS is a 60-year-old organization and a global society that has evolved and changed.  It’s inspiring to see our community working to find solutions, thinking together as opposed to thinking in silos. And that’s what we need. We need to be the bridge. We need to be a transparent provider of democratized information.

Our membership has grown to more than 125,000 members. We landed on “Creating Tomorrow’s Health” because we are about the future, about bringing together individuals who care about generative AI and the patient. This is the difference between where we think about solutions not for the sake of an organization but the ultimate audience we all serve – patients. So that’s an exciting responsibility.

Bashe: I would very much appreciate knowing a bit about the fact that when we get together in two weeks in Orlando, some of the policy conversations will occur, from modernizing HIPAA to cyber security aspects. HIMSS is at the forefront of community building. It also tries to create a safe environment so that information can be used to improve the human condition. Could you share a little bit about that?

Tom Leary, SVP, Head of Government Relations, HIMSS:  Our policy initiatives are set by the board of directors and society members.  We are focusing on health equity. Everything needs to be pointed toward health equity so that we can leverage technology and data science to improve the human condition you’re talking about.

Specifically, concerning global conferences, we’re anticipating a lot of conversations in several key areas.

Artificial intelligence has just overtaken all the discussions around public policy. Several camps are starting to form. Some think AI is the panacea for the patient’s condition, provider burden, or any other categories we might want to discuss or that stakeholders might want to discuss.  The other camp is the fearful individuals- whether AI is taking their jobs or AI is making decisions where providers are not in the middle. It’s those kinds of conversations around artificial intelligence that we anticipate having.

Cyber security and data privacy.  The more that health care remains in the top five targeted sectors, we would fully anticipate a lot of conversation around how to maintain a high degree of vigilance and preparedness, and, quite frankly, both policymakers and our members want to talk about it, such as  “What do you know that I need to know so that I can better prepare my organization against a cyber-attack?”

Data modernization is a third key area for us that we anticipate a lot of dialogue on, particularly from the US perspective. What we saw from the global pandemic was a borderless global issue. Much investment in some areas, particularly in the clinical setting around technology advancements, resulted in excellent preparedness. However, we are still dealing with many paper-based approaches in the realm of public health and population health. So, how do you modernize the public health community?  We are facilitating ideas and conversations to address global public health priorities.

We’re very excited. A critical development in the last 48 hours is that the CDC Director, Dr. Mandy Cohen, will be the first CDC Director and, in close to 15 years, the only Director to address any HIMSS audience. More specifically, the top session that she’ll be sharing with the office of the National Coordinator is on the whole issue of data monetization. Those are three key areas that we’re looking at, particularly from a conference perspective. We can also get into some other year-round topics.

Challenges of Technology Linked to Patient Care

Bashe: I will want someone to address year-round topics because I see the annual meeting as the beginning or culmination of the year. I do have a question regarding innovation because we often talk about information. Still, I often find that many people from the digital health innovation sector attend HIMSS annually and at the national meeting.

Some of them come from chief technology offices or chief information offices or people involved in information services, or they’re people developing systems in terms of augmented intelligence or Chat GPT, the application of higher technologies to synthesize information.

Other people are looking at the integration of tools. Smart wearables, all these intelligent applications. I would very much appreciate your perspective as HIMSS leaders in talking a little bit about the role that HIMSS plays in supporting digital health innovation that collects and shares information.

Toni Laracuente, Senior Vice President & Global Head of Analytics, HIMSS:  My background in the clinical space is as a thoracic ICU nurse, which was my specialty for many years, and then I moved into quality improvements and Hospital Administration.

In the early days of electronic medical records, what you just described with nurses saying, “Oh, I don’t have time to look at that,” those were kind of the dark days of digital health, when systems were designed primarily as billing systems or departmental systems that were very focused on billing but had limited functionality and workflow process for the clinician, for the nurses, the doctors, physical therapists, and any other kind of ancillary professional service the patient may encounter.

Our practice within HIMSS analytics is genuinely focused on digital transformation. When I say digital transformation, I’m talking about the innovative, intentional, and clinically designed use of data and technology systems.

But people first, tech last. We look at people, processing data, and then technology because our approach is for digital transformation to be successful; it has to be person-centric and focused on the needs of the people who will be using and experiencing that technology.

It’s not a “one size fits all”.  The work we do with our digital maturity adoption models – you may have heard of the MRAM and ERAM adoption models. That’s the most well-known. But we have digital maturity models that span the entire care continuum. Suppose you consider any care delivery environment where a person may seek and access health care. In that case, our maturity models can assist and provide guidance and strategy for the digital transformation of those care delivery environments. The focus is on the person-centric or the patient-centric digital health ecosystem.

That is one of the presentations I’ll give at the global conference. It’s the use of digital maturity and digital transformation to build a person-centric digital health ecosystem. It needs to be a seamless process from the first encounter to the end of the encounter, from Pre-Natal right through to the End of Life.

Most importantly, it has to work seamlessly for everybody coming into contact with the system. So, that means using innovative technology. But the technology needs to work in the background. Then, the people using that technology can focus on their jobs. And we don’t have those situations where the nurses say, “Well, I don’t have time to read a digital health record.”

The response should be: “That is a tool that enables me to do my job so much better because I have access to the information that I need when and where I need it.” And the same is true for anybody, whether that’s the patient, the patient’s family, the physician, or any other healthcare provider.

Our maturity models are the focus of our work. All our maturity models have eight stages, and in the very beginning, at that stage of 0, 1, 2, which is pretty much where 95% of US and global healthcare systems sit in that early stage of digital maturity.

We often encounter process automation in some ways, but not digital transformation. Our tools and methodologies are designed to guide organizations from that piecemeal, fragmented use of technology and healthcare delivery to digital transformation, where you start at Pre-Natal and go through End of Life.

Leary: Regarding innovation, we’re very excited to have the ARAPH, the new Advanced Research Program Agency for Health (ARPA-H), which is a bipartisan development. They have about $2.5 billion that they want to spend on innovation, and they have a mandate to get the word out. Their deputy director is coming to the global conference to educate the healthcare community, from startups to large organizations, and to work with them.

Innovation can be stretched; what’s the next version of innovation in healthcare? They must find those innovative thoughts and voices and adequately fund them in a tight budgetary environment. Here in the US, they have $2.5 billion. And it’s a bipartisan belief that we need to continue to invest in that kind of approach.

It’s very similar to what happened with the 21st Century Cures Act. ARPA-H is new, and we’re very excited to have their senior officials there with us in the meeting with the startups and large organizations.

Global Meeting Hosting Government Leaders

Buck: I want to add that we have the South Korean Minister of Health is expected to attend, and representatives from Samsung Medical Center, which you’re going to be hearing a lot more about in terms of the innovation that they’re driving as a Stage 7 hospital system, but the message and the outcomes that they are going is a great touchpoint for all organizations around the world.

Bashe: To your point about the South Korean Minister of Health coming. It’s truly a global meeting, although it’s hosted in the United States.  

Hong Kong spends about 6 to 7% of its GDP on Health. They live about 15 years longer than we do in the United States. One of the things I find hopeful is that when I’m visiting and speaking to colleagues in other nations, most health information is digitized, consumers have their health records, and they are moveable.

Christine, to your point: when you and the senior staff are dealing with members of other governments worldwide, I imagine you’re serving an unofficial diplomatic role for the US health system with other people interested in sharing best practices. Could you give a glimmer about your global insights of not just dealing with the membership of HIMSS? I think you said there are 125,000 members now.

Buck: Toni, when you were speaking, the individuals in HIMSS come from a technology background; I have a FinTech background, and Toni is an actual patient care advocate. Everyone is invested in some way.  Hal Wolf, our CEO and President, is a person who works toward democratizing information between countries, dignitaries, and organizations, and that, to me, is a profound shift where we’re not keeping the information in for our benefit or someone else.

Our senior team comprises practitioners and developers of these new ideas, drawing ideas from the entire HIMSS staff and community. They’re leading panels like Toni or developing products.

Leary: The excellent collaboration between our organization and your experience has been so helpful to my growth—the beauty of what’s happening at global conferences. Perhaps we’ll get as high as 80 countries this year. They’re all searching for that digital health transformation approach, and sharing what they’ve learned and lessons they could learn from others is the key to the conference conversation and throughout the year.

The world looks at the 10-year investment that the United States made in digital health transformation, from 2010 through 2021, in the Medicaid/Medicare providers and all the providers that updated their systems. When the pandemic hit the United States, for all its politics around vaccination and immunization, aside from that, the United States was technologically ready to layer on telehealth services and various capabilities such as data and analytics because they’ve invested.

What we’re seeing in different parts of the world is curiosity about how the US did it, what kind of investment is needed, and what you would avoid if you were to do it again.

The Germans, for example, last year held a very impactful conversation with several members of the US Government on “If you had to do meaningful use over again, what would you do differently?” and struggling with the issue of not only provider burden but providers and patients “opt-in opt-out” of a program, whether it’s somewhere in Europe or Asia, or Central and South America.

They all want to get to that transformation—part of this conversation we’ll be having at our second Ministerial summit. Several years ago, we experienced the Minister of Tajikistan in one room, and the Columbian Minister of Health was in the next room, and they didn’t interact.

What we designed last year and again this year is a Ministerial Summit to talk about health equity, technology, and some of the capabilities we can all embrace as a community.

We’re expecting senior leaders from between 15 and 20 countries to sit around a table for two hours on Wednesday afternoon and continue the conversation into the evening at the international reception. They have those leaders together, talking about the vision for the future.

Bashe: The NGO element of HIMSS comes across. It’s a membership-based NGO. You are trying to advance collaboration and standards around how information can improve people’s lives and be somewhat universal. A nation’s borders do not trap information, and information shared can accelerate our understanding of how to deal with everything, from social determinants of health to the cost of health to the efficient use of health personnel, all that is driven by information. HIMSS is a depository of how processes impact performance in terms of health information. Would that be accurate?

Preparing for the Next Pandemic

Leary: That’s absolutely part of what we’ve seen over the last couple of years, which is that information sharing helps to advance not only individual countries but regional and global initiatives. The conversation that we had around the European health data spaces they developed for the EU was a big piece of legislation. There was concern that individual countries would be able to lock down their data.

If that is the case, what happened with the pandemic? What was the response to the pandemic, where data on COVID-19 from the early days of Asia would not have made their way to Europe, the United States, the Americas, and Africa? Researchers were able to work together because the data flowed from place to place, turning it into actionable information and vaccination and policies.

Suppose we don’t have those global dialogues around the power of the data and turning it into actionable information. In that case, you don’t have that kind of rapid response in a global pandemic.

Bashe:  As the HIMSS C-suite team, you’re part of a bigger puzzle. Your pieces have to align together, and I appreciate that. But regarding your mandate responsibility to the HIMSS community, could you share an expectation or hope you’d like to see come out of the upcoming meeting?

Buck:  My expectation and hope are that we create the energy for people to not just convene at one moment in time for a few days, but that it carries on 365 days a year and that we also create a stronger connection to the value that HIMSS bring to members, to organizational affiliates, to providers and patients. My goal is to get the human message out there and have all the passion and hard work come out from the team you see here and everyone who attends and creates that community.

Jim Burnett, Vice President, Engagement Strategies, HIMSS: HIMSS is an entire constellation involving research, analytics, government relations, professional development, and our chapter community. What we have is this community, which offers a wealth of engagement opportunities. In going through the study of all our different member communities, what I’m finding most clear is we need to draw people into that community from this important event. They need to come into the government relations group from the government; they need to go into the analytic tool sets to roadmap their digital transformation.

At the event, I hope our broader community is getting a lot more exposure and that we are helping people understand that it’s not this point in time. It’s not this individual session that you’re sitting in. It starts there and then crawls through that spider web through all these other supportive products and services that come out with the association.

Bashe: I notice that HIMSS members are deeply committed to the organization. It’s not like I’m sending in my annual check; they feel that by being a member of HIMSS, they are part of that conversation, part of the process of the evolution of the system, of how the information will be used.

Jim Burnett, how much of your role is spent in terms of looking at member retention and member acquisition, but also making sure that people understand the culture, the inherent values of HIMSS, and the responsibility that HIMSS feels in terms of how the information will be used to improve the health system?

Burnett: It’s about the overall value driven by the community and the collaboration. Most hospital systems aren’t in competition with one another. It’s the rising tide lifting all boats. To ensure that all these voices are heard, that their case studies are involved in our research, that their voices are indeed heard in the community, and that they can share their best practices.

That is the actual value of that community piece. It’s not necessarily the most prominent voices. You need to be able to pull from the corners of the room, draw people out, and get their perspectives on the conversation. I think that’s a critical point.

Professional Development to Initiatives on the Hill

Bashe: It’s not about digitally emailing your membership that their dues are up. Tom, how big is your policy team?

Leary: Our policy team is seven people. We deputize everyone on this screen, the rest of the organization, and the membership, so our policy team is 125,000 people. We’re seven staff. It’s a good thing.

Bashe: Is there a piece of legislation or conversation you and the team are hyper-focused on right now? What do you feel concerns the American health system here in the US?

Leary: We’re very focused on proper Office of National Coordinator funding.  They haven’t had a reasonable budget since their first year. They’re the little agency that can. 

There are two other pieces of legislation that we’re pounding on for this year. One is the telehealth provisions from the pandemic, which were extended through December of this year. And we’re working across the coalition to make that policy permanent. We’ve seen the benefit of telehealth. We’ve all benefited from it. The greater access and better healthcare outcomes. Those were set to go back to March 12, 2020, in terms of policy structure if we don’t make that policy permanent.

Laracuente: From an analytics product perspective, we are launching our newest digital maturity model, the infrastructure adoption model, and that launch is happening at our booth at 4 pm on Tuesday.

We’ve invested heavily in completely rewriting and modernizing this model. Throughout this session, we discussed using artificial intelligence, cyber security, and technology infrastructure. Overarching the in-frame model enables an organization to manage the risk of having technology. Financial risk, data, security, and privacy risk. And the risk that comes with user adoption and getting the greatest return on investment.

We’re launching that. But from an all-encompassing digital health ecosystem view. I love that you started this conversation by discussing the connections between patients with health problems. Jim mentioned that hospitals work together to try to lift each other in healthcare. When we look at health outcomes, all of the work we do in digital transformation is focused on improving the health of populations everywhere.

Part of what I’m touching on in my presentation on Tuesday is – are you familiar with the quintuple-

aim of health from public health improvement? Everything we do is focused on improving population health outcomes. Still, worldwide health care is focused on that overarching premise of the quintuple aim – improving access to care, improving patient experience, workforce experience, health, equity, reducing costs, and enhancing value for money.

We’re positioning our work in digital transformation and the maturity models in alignment with that. We’re very focused on how the digital security models deliver health outcomes and how those outcomes contribute to our provider organizations achieving success across those five domains of the quintuple.

You mentioned innovation earlier, and one thing that I wanted to touch on is when it comes to artificial intelligence, there’s a lot of discussion and hype around it, i.e., AI will take our jobs in healthcare. That couldn’t be further from the truth. AI will help us do our jobs much better, the jobs we’re all here to do, and why we get out of bed every day.

AI Will Unleash Waves of Practical Applications that Improve Patient Care

Bashe: There was a recent trending piece in Medika Life about pathologists and AI that reduces their attention when they feel they have more specificity and improve accuracy.

Laracuente: AI is perfectly positioned to do that when we look at the HIMSS mission around equity and health outcomes. I always start any conversation about AI and the workforce with the premise that AI will not replace healthcare providers or physicians. However, the physicians who use AI to do their jobs better and more efficiently will replace those who don’t.

Bashe:  The technology of the horseless carriage replaced blacksmiths through time. Technology has replaced professionals. I know that that’s very true. Humanity wins, hands down. It is unleashing as Innovation Theorist John Nosta proclaims, “the cognitive age.” Open-minded people who can hone their curiosity and ask the right questions will be valuable. Those who can’t put two words together will be in trouble.

Buck: That’s what I love about HIMSS – we’re substantive. We’re the real deal. We’re not fly by night. I love that about this whole conversation, but the entire organization and our community worldwide are the substantive providers of the suitable types of information people seek.

Bashe:  Everything is rooted in information. How we respect information, access it, and democratize it is essential. HIMSS is in incredible hands thanks to your collaborative leadership.  Thank you for sharing these thoughts and essential priorities for improved healthcare access and delivery to Medika Life readers.  I’m looking forward to continuing this conversation in Orlando.

Here is a special preview of the “Health Unabashed” interview with HIMSS CEO and President Hal Wolf on Healthcare NOW Radio from Monday, March 11th to Sunday evening, March 24th.

***

Special thanks to Albe Zakes, HIMSS Director, Corporate Communications for facilitating this conversation with HIMSS leadership.

The post Exclusive Medika Conversation with HIMSS Top Leadership – Inside Scoop on Key 2024 Priorities appeared first on Medika Life.

Sitting at the top of this impressive list is Dr. Nadia Ahmad, PharmD. Ahmad works as a dispensing pharmacist for Walgreens in Middlesboro, KY. She is cited for exemplary leadership, customer care and for her support for mental health issues, writing a book about being a pharmacist, and even incorporating a successful pet medication aspect of the pharmacy. 

The Pharmacy 50 program was launched in 2021 by The Pharmacy Podcast Network (PPN). According to Todd Eury, CEO and founder of PPN, the program is designed to recognize individuals that have had a significant impact on the thoughts, behaviors and accomplishments of others in pharmacy. Honorees come from a variety of practice backgrounds and are elected via a social media campaign that allows people to vote for leaders they know in 14 categories, such as: health system, retail chain, independent community, association management, academia, entrepreneurs and others. Eury says he feels the scope and format of the Pharmacy 50 programs makes it possible both pharmacist and non-pharmacist professionals to be honored. He adds, “I think this makes the Pharmacy 50 program the most inclusive awards program in the industry.” 

Here’s the complete list:

1. Nadia Ahmad PharmD 
2. Jay Phipps PharmD
3. Amtus Sami Shafiq PharmD* 
4. Joy Morrow PharmD, Candidate 2024
5. Matt Lewis BA 
6. Shahida Choudhry PharmD
7. Joseph Friedman RPh 
8. Shane Jerominski PharmD
9. Haley McKeefer PharmD, Candidate 2024
10. Ben Heiser PharmD MBA 
11. Sharon Faust PharmD, MBA
12. Patrick Hussey PharmD, MBA 
13. Darshan Kulkarni PharmD, Esq 
14. Aniqa Azad PharmD 
15. Brittany Radomski PharmD 
16. Shannon Reidt PharmD
17. Easton Bryant PharmD 
18. Libby Shelton PharmD, RPh
19. Ilisa Bernstein PharmD 
20. Nhu Truong PharmD 
21. Kenneth O’Shea PharmD
22. Eric Huckins PharmD 
23. David Randolph BS Pharm
24. Bled Tanoe PharmD
25. Jill Boyett PharmD
26. Nadia Malik PharmD
27. Tamar Lawful PharmD
28. Courtney B. Smith PharmD 
29. Jessica Nouhavandi PharmD
30. Fiona Sartoretto Verna 
31. Josh Pirestani BS 
32. Myla Marshall PharmD, RPh
33. Jesica Mills PharmD 
34. Reuben Saba PhD
35. Sue Ojageer PharmD
36. Olivia Buckoski PharmD 
37. Daniel Bundrick RPh 
38. Hussam Hamoush PharmD 
39. Shaun Jensen BS
40. Chris Antypas PharmD 
41. Janan Sarwar PharmD 
42. Lisa Faast PharmD 
43. Robert Kress BS Pharm 
44. Sammy Yafai PharmD MBA 
45. Tara Schneider PharmD 
46. Lindsay Dymowski Constantino PharmD
47. Behnaz Sarrami PharmD
48. DeArcy Vaughan, PharmD, MBA
49. Leslie Banuelos PharmD
50. Nancy Banoub RPh BSc 

A complete list of the Pharmacy 50 can be found at: http://www.Pharmacy50.us
(https://pharmacypodcast.com/2024/01/03/the-50-most-influential-leaders-in-pharmacy-awards-2023/) 

Michael Houge, EVP and CEO of the American Pharmacist Association had this to say about one of his colleagues and this year’s honorees coming in the 19th position, Senior Vice President Dr. Ilisa Bernstein PharmD: “The profession is fortunate to have such a strong advocate at work every day fighting for our profession. Ilisa’s dynamic, collaborative and inclusive approach to addressing some of the toughest challenges facing our profession in the federal and state regulatory world has a significant impact on pharmacists and pharmacies. I’m delighted she’s been recognized in this way.” 

Eury is excited that this year, Cardinal Health and the Independent Pharmacy Cooperative (IPC) joined in as program sponsors. He says, “the extra promotional support these two companies provided generated a 300% increase in the number of votes cast.” He added that the financial support they provided made it possible for PPN to host a formal Awards Ceremony at their corporate headquarters in Brownsville, PA scheduled for Wednesday January 17th at 12:30PM ET. The event will be streaming live on YouTube, LinkedIn, and Facebook. 

Darren Thieding, Chief Operating Officer at Independent Pharmacy Cooperative (IPC) commented: “The excellence demonstrated by the winners of the Pharmacy 50 awards should give everyone confidence that pharmacy is poised to succeed in 2024 and beyond. With such great operators, healthcare professionals, and innovators at the helm we can work collectively towards tackling and overcoming the challenge of moving the industry forward. IPC is proud to be a partner in recognizing the excellent work done by these award winners.”

Eury adds, the mission of PPN is to provide a diverse mix of podcast hosts and programs for all aspects of the profession. PPN, which currently features more than 40 podcast hosts, is the largest podcast program dedicated specifically to the pharmacy industry and was first launched in March of 2009. Eury adds that the podcasts are downloaded more than 100,000 times each month. 

Plans are already underway to expand and improve, The 50 Most Influential Leaders in Pharmacy, with elections scheduled for December 2024.

Media Contact: Todd Eury, CEO, Publisher@PharmacyPodcast.com (412) 585-4001

About Pharmacy Podcast Network (PPN): The Pharmacy Podcast Network (PPN) is the industry’s largest and most trusted source for pharmacy-related podcasts, providing education, information, and thought leadership for pharmacists and healthcare professionals. PPN’s mission is to inspire, educate, and connect pharmacy professionals across the globe, promoting innovation and excellence within the field of pharmacy.

SOURCE Pharmacy Podcast Network

The post Announcing The 50 Most Influential Leaders in Pharmacy appeared first on Medika Life.

But what of the company that prioritizes using this powerful technology to become more efficient and faster – using powerful tools like ChatGPT and GenAI to primarily bolster the bottom line without adding value? Without policy bumper guards, AI might become a 21st-century dehumanizing sharp pencil in dispassionate bureaucrats’ hands.

“Digital technologies are changing the healthcare sector at an unprecedented pace,” notes Stan Kachnowski, PhD, HITLAB chair and host of the program’s ongoing Innovators Summit 2023 that brings together digital health leaders. “It is a priority area for the health ecosystem at large.”

At the 2023 Fall HITLAB New York City Conference, Downstate Health Science University CEO Dr. David Berger, offered counsel where medical institutions can shift functions that can be replaced by AI-driven tools. Berger shared a simple, thoughtful chart developed by Vineeta Agarwala, MD, PhD, a general partner at venture capital firm Andreessen Horowitz (known as a16z).

The Timeless Tussle Between Bureaucracy and Humanity

Vice President Kamala Harris spoke recently in London about the sharp double-edged sword of AI in health delivery and why the government will need to create business guidelines:

“AI has the potential to do profound good to develop powerful new medicines to treat and even cure the diseases that have for generations plagued humanity, to dramatically improve agricultural production to help address global food insecurity and to save countless lives in the fight against the climate crisis. But just as AI has the potential to do profound good, it also has the potential to cause profound harm.”   

Why is the Veep worried?  Are her comments overreacting or reacting to people’s irrational fears? Is the administration in Washington sending a message to big businesses that the executive branch sees potential risk to people’s health via AI? This hand-wringing is more than just bluster.  Just look at AI’s entry into the access to care payer process: perhaps an algorithm gone amuck?

UnitedHealthcare and Cigna Healthcare are already facing consumer backlash after claims that these payer behemoths use automated data to deny beneficiaries needed medical care. These allegations have already ignited a broader conversation on how insurers perhaps overly rely on artificial intelligence algorithms when processing claims or prior authorization requests.  

Wounded reputations, customer outcries, and diminished care reinforce why companies must not install AI in the decision-making corporate motherboard at the expense of the human touch. Indeed, having already touched the hot stove, CIGNA stepped forward to acknowledge that human connection is key to maximizing the potential of AI to advance the healing process.

Humanity in the Loop

“Above all else, a human must be in the loop,” suggests Andy Fanning, vice president of intelligent automation, AI enablement, and business transformation at The Cigna Group, in a statement. “Our AI solutions must be used to augment, never replace, the human experience — allowing experts to spend more time in the areas where they can apply their expertise.”

Ever evolving, the health sector is poised to take a giant leap forward by inviting augmented intelligence and large language models like ChatGPT into the fold as technology partners in care decisions, clinical trial design, drug discovery, health information, patient diagnosis, manufacturing medical supply, and, yes, the dicey decision-making process of payer insurance claims. The operative word must remain ‘augment’ – with these new technologies never fully replacing the human element in service of technological potential.

All concerned observers hope smart technologies will advance diagnoses, treatment plans, and preventive care, improve medical records accuracy and refine cost management.  Machine learning algorithms – like newbies on the job scene – require mentors. Technology cannot work in a vacuum.  People must have their hands on its wheel in creating algorithms. 

As the adage goes, “Garbage in, garbage out.” AI applications are only as practical as the cognitive sophistication of their mentor. But who are the people doing the mentoring? Pencil pushers? Bean counters? Compassionate healers? AI and ChatGPT have a prominent place in healthcare, but their absolute power over the delicate balance of humanity in care and corporate objectives is still uncharted territory.  Do we succumb to our fears? Do we embrace inevitable advances, no matter the cost?  That remains a “people” call.

The US and EU are navigating the fine line between intelligent innovation and protecting patient interests as they grapple with regulating GenAI. The outcome of these discussions is pivotal in shaping the future of health, ensuring its safe and responsible integration into medical practice and safeguarding patient well-being and data privacy.

Change is a Perpetual Threat

Always looking around the corner at the future of innovation’s impact on humanity, John Nosta, a global health and technology go-to, writes in Psychology Today:

“The intersection of AI and human cognition is as much about philosophy and ethics as it is about technology. If history is any guide, every significant technological advancement brings with it societal trepidation. The printing press, electricity, and the internet all were met with a mix of awe and apprehension. The introduction of AI into our cognitive domain is no different.”

For centuries, change has threatened the status quo – how we live and earn our livelihoods.  Blacksmiths faced the horseless carriage with understandable fear. Today, toll booth clerks and fast-food workers see automated toll and ordering systems as a threat. Innovation will often create employment disruption. It will also help us to redeploy talent in new ways.

Almost 50 years ago, physicians fought the passage of legislation establishing Medicare and Medicaid with full-page New York Times ads. For most, it signaled the rise of “socialized medicine” and the end of their decision-making power. Today, it’s embraced by Americans – regardless of political affiliation – as a social benefit and a fundamental right.  AI is the health professionals’ new nemesis. It might question their clinical calls or offer added perspective. As baseball Hall of Famer Yogi Berra said, “The future ain’t what it used to be.”

We must not draw lines of entrenchment in the necessarily symbiotic relationship between empathy and augmented intelligence. The yearning for healing and the desire to heal has always called upon human touch, compassion, and knowledge. AI offers the greatest potential to serve as an extension of our intellectual, experiential, and emotional capabilities of any technological innovation we’ve seen to date.

ChatGPT and GenAI provide tremendous value, but they should be tools to enhance and complement human capabilities rather than replace them.

Empathy is at the Heart and Soul of Health

To understand the profound significance of human empathy in health, we must first acknowledge its irreplaceable role. Empathy is the cornerstone of effective patient care. It’s the ability to understand and recognize the feelings of the “other,” offering solace, compassion, and a comforting presence when people and their families face medical challenges.

When someone receives a life-altering diagnosis or undergoes a challenging medical procedure, the human touch provides reassurance and support. Empathetic clinicians, with their ability to connect on an emotional level, instill trust, alleviate fear, and foster a healing connection. No machine, no matter how intelligent, can replicate the power of human empathy.

AI and ChatGPT as Extensions of Human Capabilities

But AI and ChatGPT, in particular, may take a front seat in healthcare. They serve as invaluable extensions of our cognitive abilities. These technologies excel in tasks that require vast data analysis, pattern recognition, and information retrieval. By handling the data-intensive aspects of health synthesis, health professionals can focus on what they do best—providing amazing medical (and compassionate) care.

AI is not a competitor but a collaborator. It can sift through mountains of medical data, identify trends, and suggest potential treatment options, enabling healthcare providers to make more informed decisions. AI can rapidly process radiological images, analyze genetic data, consider the possibilities of undiagnosed rare diseases, and even predict disease outbreaks, all of which contribute to more accurate diagnoses and better patient outcomes.

One of the world’s most forward-looking thinkers on AI in medicine is Tom Lawry, former national director of AI at Microsoft, author of the business bestseller Hacking Healthcare, and now an advisor to health leaders suggests:

“Generative AI is the latest flavor of many flavors of what’s known as artificial intelligence. So, I like keeping things simple. So to your point, let’s assume AI is really related to IT systems, the sense, comprehend, act and learn. Probably, more importantly, it’s intelligence demonstrated by software with the ability to depict or mimic human brain functions. And I want to emphasize mimic human brain functions, not replace.”

Acknowledging this delicate dance is critical to harnessing the full potential of ChatGPT and GenAI in health. AI can enhance health efficiency and accuracy. Yet, it should always work in conjunction with human empathy. The two can harmoniously coexist, with AI as a valuable tool in the healthcare provider’s toolkit.

We must ensure that technology remains a faithful servant of empathy, not a quick and efficient replacement. AI can handle repetitive tasks and hone data-driven insight – it can scrape data from unwieldy electronic medical records.  But human touch provides emotional support, compassion, and a connection that cannot be replicated. ChatGPT can make the consumer seeker comfortable mining information around sensitive and potentially embarrassing questions. But getting medical help requires a relationship between healer and seeker.

Cognitively Sharp Physicians and the Future of Patient Care

Cognitively sharp individuals embracing AI and ChatGPT as extensions of their abilities can leverage technologies most effectively. More and more medical schools will need to shift their curricula to focus on the psychological power of empathy in healing and patient adherence. More and more physicians – with their iconic white coats and rank-signaling stethoscopes – will need to hone people skills to secure their positions as medical superstars.

AI will assist in diagnosing complex diseases, suggesting personalized treatment plans, and even providing real-time information during surgical procedures. When healthcare professionals integrate AI into their workflow, they become empowered with a wealth of data-driven insights, enabling them to make more precise decisions and deliver better patient care.

The Needed Partnership

The connection between human empathy and AI is not a zero-sum game. The essence of humanity in health delivery will continue to lead the way, with AI acting as a supportive ally. The health industry will thrive in this ever-evolving landscape by calling for a harmonious balance between providers’ emotional intelligence and AI’s fact-finding possibilities. United, human and machine will drive innovation, improve patient outcomes, and ensure humanity remains at the heart of health. In the delicate dance between human empathy and AI, the patient must always be the center of our focus and the defining voice that guides response.

The post The Defining Dance Between Empathy and GenAI in Health appeared first on Medika Life.

Amid rising inflation, annual family premiums for employer-sponsored health insurance climbed 7% on average this year to reach $23,968, a sharp departure from virtually no growth in premiums last year, the 2023 benchmark KFF Employer Health Benefits Survey finds.

On average, workers this year contribute $6,575 annually toward the cost of family premium, up nearly $500 from 2022, with employers paying the rest. Future increases may be on the horizon, as nearly a quarter (23%) of employers say they will increase workers’ contributions in the next two years.

Workers at firms with fewer than 200 workers on average contribute nearly $2,500 more toward family premiums than those at larger firms ($8,334 vs. $5,889). In fact, a quarter of covered workers at small firms pay at least $12,000 annually in premiums for family coverage.

This year’s 7% increase in average premiums is similar to the year-over-year rise in workers’ wages (5.2%) and inflation (5.8%). Over the past five years, premiums rose 22%, in line with wages (27%) and inflation (21%).

Among workers who face an annual deductible for single coverage, the average this year stands at $1,735, similar to last year. The average deductible amount has increased 10% over the last five years and 53% over the last ten years.  Workers at small firms (under 200 workers) on average face much larger deductibles than workers at larger firms ($2,434 vs. $1,478).

The modest rise in deductibles may reflect employers’ perceptions about the burden of cost-sharing on workers.  More than half (58%) of employers say that their workers have at least a moderate level of concern about the affordability of their plan’s cost-sharing requirements.  

“Rising employer health care premiums have resumed their nasty ways, a reminder that while the nation has made great progress expanding coverage, people continue to struggle with medical bills, and overall the nation has no strategy on health costs,” KFF President and CEO Drew Altman said.

Almost 153 million Americans rely on employer-sponsored coverage, and the 25th annual survey of more than 2,100 small and large employers provides a detailed picture of the trends affecting it. In addition to the full report and summary of findings released today, the journal Health Affairs is publishing an article with select findings online. The article will also appear in its November issue.

Some Large Firms Do Not Cover Legal Abortions; Others Do But with Restrictions

In the wake of the Supreme Court’s June 2022 decision that ended the federal constitutional right to abortion, states have adopted a range of new laws to prohibit or severely restrict access to abortion, creating challenges for large employers with workers in multiple states.

Among all large firms (with at least 200 workers), one in ten (10%) say that their largest plan does not cover legal abortions under any circumstances. An additional 18% say they only cover legal abortions under limited circumstances, such as in cases involving rape, incest, or health or life endangerment.

In contrast, nearly a third (32%) of large firms say they cover legal abortions in most or all circumstances. Another four in ten (40%) say they were unsure of their plan’s abortion coverage, potentially because their policies were in flux or they were unaware of the details.

With abortion banned or severely limited in some states, 7% of large employers say that they provide, or plan to provide, financial assistance for travel expenses for enrollees who have to go out of state to obtain a legal abortion. Very large employers (with at least 5,000 workers) are most likely to provide, or plan to provide, such travel reimbursements (19%).

Concerns Persist About Adequacy of Mental Health and Substance Use Networks

Among large employers (with at least 200 workers) that offer health benefits to at least some workers, the vast majority (88%) say their plan has enough primary care doctors to provide timely access for enrollees. Substantially fewer say the same about their mental health (59%) and substance use condition (58%) networks.

Nearly one in five (18%) of large offering firms say that they took steps in the past year to increase the number of mental health providers in their largest plan’s network. This includes 44% of the largest employers (with at least 5,000 workers).

On the other hand, one in five (21%) of large offering employers say their plan has limits on the number of covered mental health services, potentially restricting access for enrollees with long-term needs.

“For several years now, the survey has shown that many large employers do not believe that their networks have enough mental health providers to provide timely access to care. In 2023, many large employers, including nearly half of the largest employers, say that they are taking steps to better meet enrollees’ needs,” said Gary Claxton, a KFF senior vice president and director of the Health Care Marketplace Project, the lead author of the study and also of the Health Affairs article.

Other findings include: 

• Offer rate. Nearly all employers with at least 200 workers offer health benefits to at least some workers, though smaller firms are increasingly less likely to offer health benefits as they get smaller. For example, 83% of firms with 10 to 199 employees offer health benefits to at least some of their workers, while just 42% of firms with three to nine workers do so.
• Dental, vision and long-term care insurance. Among firms offering health benefits, most also offer separate dental coverage (91%) – double the share that did so in 2010 (46%). Most also offer vision (82%) insurance, also up sharply since 2010 (17%). Fewer offer long-term care insurance (26%).
• Coverage for gender-affirming surgery. Among employers with at least 200 workers, 23% cover gender-affirming survey in their largest health plan. More than a third (37%) say they do not cover such surgeries, while a large share (40%) are not sure about such coverage. Among the largest firms (at least 5,000 workers), nearly two thirds (62%) cover gender-affirming surgery, many of which expanded the benefit in the past two years.
• Centers of Excellence. About one in five (19%) offering employers with at least 200 workers say their plan includes a “center of excellence” program for specific services, either limiting enrollees to a narrower group or providers or offering lower cost-sharing for doing so. Among these firms, 22% have introduced a new center of excellence program within the last two years. Among firms with a center of excellence program, 45% had a program for joint replacement, 42% for back or spine surgery, 31% for bariatric surgery, 30% for mental health, and 28% for substance use disorders.

Methodology

KFF conducted the annual employer survey between January and July of 2023. It included 2,133 randomly selected, non-federal public and private firms with three or more employees that responded to the full survey. An additional 2,759 firms responded to a single question about offering coverage. For more information on the survey methodology, see the Survey Design and Methods Section.

ABOUT KFF:

KFF is the independent source for health policy research, polling and news.

ABOUT HEALTH AFFAIRS:

Health Affairs is the leading peer-reviewed journal at the intersection of health, health care, and policy. Published monthly by Project HOPE, the journal is available in print and online. Late-breaking content is also found through healthaffairs.org, Health Affairs Today, and Health Affairs Sunday Update.

Project HOPE is a global health and humanitarian relief organization that places power in the hands of local health care workers to save lives across the globe. Project HOPE has published Health Affairs since 1981.

The post Benchmark KFF Survey: Annual Family Premiums for Employer Coverage Rise 7% to Nearly $24,000 in 2023 appeared first on Medika Life.

When Selam Solomon Caldwell and her husband learned she was pregnant last year, the stakes for finding the right OB-GYN felt high. Caldwell, a Black woman, had heard stories from family and friends of maternity care providers who ignored their requests or pressured them into cesarean sections without clear medical justification.

As a relative newcomer to Los Angeles, the recruiter, now 31, knew few Black people who could recommend doctors who had treated them with respect. She combed review sites, including Google reviews and Healthgrades, but couldn’t find how nearby physicians and hospitals might treat a Black woman like her.

“It’s hard to tell if it’s a fellow Black person who’s giving the review,” Caldwell said.

Consumer ratings sites rarely identify patient experiences by race or ethnicity and hospitals are under no obligation to reveal the racial and ethnic breakdowns of their patient satisfaction scores. Yet that information could be instrumental in holding maternity care providers and hospitals accountable for treating patients inequitably and could empower expectant mothers like Caldwell in finding quality obstetric care.

“You can’t change what you don’t see,” said Kimberly Seals Allers, founder of Irth, an app allowing Black and brown women to find and leave reviews of maternity care providers. She’s one of a few entrepreneurs developing new tools for collecting feedback from mothers of color.

A steady drip of new research over the past several years has spotlighted racial discrimination by maternity care providers and the role it may play in one of the country’s most vexing health disparities: Black women experience the worst birthing outcomes, a gap not explained by income or education, according to a KFF analysis. In 2021, they were nearly three times as likely to die of pregnancy-related causes as white women.

Mothers of color, especially Black women, report that they do in fact experience discrimination. They are more likely than white women to say that their care providers ignored them, scolded them, or pressured them into treatments they didn’t want. The extent to which discrimination is reported varies widely by survey, but one recently published report by the Centers for Disease Control and Prevention found roughly 30% of Black, Hispanic, and multiracial women reported mistreatment during maternity care, compared with 20% of women overall.

It’s unclear how many hospitals track survey responses by race, and, even if they do, they rarely reveal that information. And the federal government requires generic reporting on how patients say they were treated, making it difficult to pin down and address incidents of bias in maternity care.

Funding and Regulations Lag

Currently, the results of the industry’s standard patient experience survey, known as the Hospital Consumer Assessment of Healthcare Providers and Systems, are made publicly available by the federal government to help patients compare hospitals. They incentivize hospitals to improve care and are included in the rankings of many hospital ratings sites, such as U.S. News & World Report’s Best Hospitals. But it doesn’t ask about maternity care or discrimination and has low response rates, particularly among people of color.

These flaws can also make the survey inadequate for improving birth equity. “We know it’s insufficient,” said Amanda P. Williams, an OB-GYN and clinical innovation adviser to the nonprofit California Maternal Quality Care Collaborative. Hospitals, she said, could fill in the gaps by collecting feedback from maternity care surveys and breaking the results out by race and other demographic information; they could also talk to patients through forums such as town halls or focus groups.

Joy Lewis, senior vice president for health equity strategies at the American Hospital Association, said many hospitals do this work, both generally and in obstetrics.

However, Williams believes it isn’t happening enough in maternity care.

She said there are some pockets where people are doing these activities but that they are not yet widespread. At a national conference of 200 hospital executives this year, Williams said, only a few raised their hands when asked if they break out their maternity outcomes data. “If your overall C-section rate is fine, you might think everything’s hunky-dory,” she said. “But if you see that your Black people are having 50% higher C-section rates than your white and Asian patients, there’s very important work to be done.”

Then there are barriers to participation. Studies have found many in the Black community distrust the health care system.

Fearing retaliation and being seen as an “angry Black woman,” Ta-She-Ra Manning, a maternal health program coordinator in Fresno, California, said she didn’t provide any critical feedback when her OB-GYN dismissed her concerns about unusual symptoms during her 2021 pregnancy.

Meanwhile, new funding to measure disparities has been slow in coming. President Biden’s 2023 budget proposed $7.4 million to develop a supplemental survey aimed at reducing maternal health disparities, among other steps. But Congress did not fund the item. Instead, an agency in the Department of Health and Human Services is developing it with its own funding and estimates the work will take less than five years, according to a statement from Caren Ginsberg, who directs the agency’s surveys.

Still, the public likely won’t see changes anytime soon. After a survey’s measures are created, it can take several years for the results to be publicly reported or tied to payment, said Carol Sakala, senior director for maternal health at the National Partnership for Women & Families, an advocacy organization.

“This molasses level of movement contrasts acutely with all the things hitting the news about people not getting the right care and attention and respect,” Sakala said.

Amid growing interest in health equity, traditional ratings sites are grappling with how much to share with the public. For its birthing hospital ratings, U.S. News & World Report recently started assessing whether hospitals tracked racial disparities in maternity outcomes measures, but it withholds actual results. Healthgrades is taking time to think through how to collect and display sensitive information publicly, said spokesperson Sarah Javors in a statement.

Black Innovators Fight for Better Data

Some Black women are trying to fill the void by creating new feedback mechanisms that could be more trusted by the community. Allers said she created Irth after a traumatic birth experience as a Black mother at a highly rated hospital left her feeling failed by mainstream ratings. On the app, verified users answer questions, from whether they felt respected by their doctor to if they experienced certain types of mistreatment such as dismissal of pain. Irth currently has 10,000 reviews of hospitals, OB-GYNs, and pediatricians nationally, according to Allers.

“Our data is for the community,” said Allers. “They know their feedback has value to another mom or family.”

Irth also offers analysis of the reviews to hospitals and leads campaigns to collect more reviews for them. But Allers said many hospitals have expressed little interest.

Karen Scott, an OB-GYN who created PREM-OB, a scientifically validated survey that measures racism in Black birthing experiences, said she has met hospital leaders who don’t think their providers could mistreat patients or who worry that documenting responses could carry legal risk.

The American Hospital Association’s Lewis declined to comment specifically on Irth and PREM-OB but acknowledged the Black community’s long-standing mistrust of health care providers. She said hospitals want to hear more from patients in historically marginalized groups.

Early signs of progress are emerging in parts of the country.

California hospitals will likely report disparities in birth outcomes and patient satisfaction measures. Hospitals are expected to start posting data broken out by race and other demographics on their websites in 2026, though the state hasn’t finalized the measures that will be required, said Andrew DiLuccia, a spokesperson for the state’s health data agency. At least two states, Washington and New Jersey, have disclosed rates of C-sections among low-risk patients by race for individual hospitals.

Scott founded Birthing Cultural Rigor to increase uptake of her survey. The firm has partnered with birth equity groups to recruit respondents in select counties in Georgia, Michigan, Ohio, and Tennessee. Scott said results will be used to train local health professionals on how to reduce racism in maternity care.

Separately, Irth will collect and analyze reviews for three hospitals or health systems in California, said Allers. One of them, MemorialCare Miller Children’s and Women’s Hospital Long Beach, will work with Irth to better understand the impact of birth equity efforts such as implicit bias training.

“We’ll get to see if what we’re doing is actually working,” said Sharilyn Kelly, executive director of the hospital’s perinatal services.

Caldwell, the recruiter, eventually found a doctor she trusted and went on to have a smooth pregnancy and delivery. Her son is now 8 months old. But with so little information available on how she might be treated, she said, she felt anxious until she met her doctor, when “a lot of that stress and anxiety melted away.”

Digital strategy & audience engagement editor Chaseedaw Giles contributed to this report.

[Editor’s note: California Healthline is an editorially independent service of the California Health Care Foundation, which has contributed funding to PREM-OB and the birth equity nonprofit Narrative Nation, which developed Irth.]

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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