One of the early signals to watch comes from PhaseV, which used the opening of the meeting to introduce its new AI-powered Enrollment Lab. The launch reflects a broader shift visible across SCOPE this year. Sponsors and CROs are moving upstream, earlier in the development lifecycle, to replace assumption-driven planning with evidence-grounded decision-making.

Enrollment remains one of the most persistent causes of trial delay. Protocols are often finalized before teams fully understand how inclusion and exclusion criteria interact with real world patient availability or with competitive trial pressure. PhaseV’s Enrollment Lab is designed to address that gap by allowing study teams to quantify true enrollment potential before protocol lock, not after sites have already struggled.

Built as a high impact extension of the PhaseV ClinOps platform, the Enrollment Lab leverages real world EHR data to model patient eligibility alongside patient level competition. Instead of relying on theoretical projections or late stage site surveys, sponsors can explore how specific protocol trade offs affect enrollment volume in real time. Small design decisions become visible for what they are, either barriers to access or opportunities to expand reach.

Raviv Pryluk, PhD, CEO and co-founder of PhaseV, described the intent as a shift from planning on paper to planning in clinical reality. By uncovering constraints early, teams can stress test their designs and ensure that studies are grounded in a verified patient population before site identification begins. That change in timing matters. It moves feasibility from a reactive step to a strategic one.

From a technical perspective, the Enrollment Lab extends PhaseV’s population first approach. Elad Berkman, CTO and co founder, emphasized the ability to translate protocol choices and competitive pressure into a clear view of real patient access. This precision guided modeling allows teams to evaluate alternative inclusion criteria, identify lightly contested patient segments, and surface geographic regions that may be overlooked by traditional planning methods.

Positioned early in the workflow, the Enrollment Lab establishes what is realistically achievable before resources are committed downstream. Once realistic enrollment potential is defined, PhaseV’s site identification tools can then prioritize investigators based on their ability to deliver against that plan rather than aspirational targets. The result is tighter alignment between protocol design, site selection, and execution.

As conversations continue throughout SCOPE, this launch is likely to gain strong traction among sponsors focused on shortening timelines without compromising scientific rigor. The message aligns with what many leaders here are emphasizing. Faster trials do not come from pushing sites harder. They come from designing studies that reflect how patients actually exist within health systems.

PhaseV is demonstrating the Enrollment Lab throughout the Summit, offering attendees a closer look at how real world data can be applied before the first site is ever activated. For an industry increasingly focused on predictability and patient centricity, this announcement sets an early tone for the news still to come out of SCOPE in the days ahead.

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When I read stories that appear throughout the book, the room becomes pin-drop silent. Not uncomfortable, but attentive. People lean forward. Some close their eyes. Others quietly wipe away tears. Even after reading these stories again and again, my own eyes still mist. These are not reactions to theory or argument. They are responses to a painful reality many recognize.

What becomes clear in those rooms is that the frustration is not isolated to one role or perspective. Patients speak about waiting and uncertainty. Clinicians describe exhaustion and moral strain. Innovators and policymakers wrestle with systems that move more slowly than the problems they are trying to solve. The details differ, but the throughline is the same: people want care that recognizes their presence and treats them as more than a process to be managed. When that recognition happens, the tone of the conversation changes.

Since its listing, the book has spent several consecutive weeks on Amazon’s Top New Releases list. That matters in a conventional sense. Still, rankings, whether in print or digital format, do not explain what happens when people hear their own experience reflected back to them with clarity and respect. Stories do that work. Many are weary of facts and figures deployed to justify positions rather than illuminate lived reality.

Human experience carries a different kind of truth. It does not compete with data, but it precedes it. When experience is named accurately, people do not feel persuaded. They feel recognized. That recognition opens space for reflection, dialogue, and ultimately for change.

A Question That Changes the Room

I finished a book talk and signing with The Marfan Foundation, and the impact lingers beyond the formal program. During the signing, people ask thoughtful, personal questions. I often ask permission to respond by reading a short passage from the book. Then I listen to stories of courage, love, and endurance that surface naturally and without prompting.

Parents speak about children. Siblings talk about one another. Families describe navigating medical uncertainty and emotional trauma over years, sometimes decades. Individuals share how they discover the strength they did not know they possessed, and how they learn to share that strength with others walking similar paths. These are not stories of abstraction. They are lived, detailed, and deeply human.

The Marfan Foundation is one of the patient and professional communities reflected in the book, and in the room, the reason is unmistakable. Physicians are spoken of by first name – Alan, Duke, Kim and Reed – not title. They are described not as distant experts, but as people who show up consistently and with care. These stories remind everyone present that even in the most complex conditions, care is sustained by relationships as much as by scientific excellence.

Between Two Meetings, on a Moving Train

As I board a Brightline train for the next meeting, the contrast stays with me in a quiet, persistent way. I am traveling from a gathering centered on shared human experience to SCOPE Summit 2026, a global convening focused on clinical trials and research infrastructure. The agenda centers on development planning, protocol optimization, patient-centric trial design, site engagement and recruitment, generative AI, and the technologies that move science from hypothesis to evidence.

One meeting is rooted in lived journeys, where science is received as hope amid uncertainty. The other is grounded in structure and precision, where science is designed, measured, and scaled. Both spaces matter deeply, and both are essential to progress. Clinical research is where rigor lives and where uncertainty is reduced in ways that allow care to advance responsibly.

Yet the transition between these two gatherings and two cities reveals something essential. People do not leave their humanity at the door of the operating room or the halls of science. They carry it with them into protocols, endpoints, enrollment decisions and trial participation. Patients do not experience trials as abstractions. They experience them as acts of trust layered onto already complex lives.

When Structure Forgets Experience

Too often, human experience is treated as something to be accounted for after systems are built, rather than as a foundation for their design. Trials are optimized for efficiency and compliance, yet struggle when recruitment falters, participation drops, or trust erodes. These outcomes are not solely technical failures. They are relational failures.

Patient-centric trial design is not a feature added late in development. It is a mindset that shapes questions, assumptions, and priorities from the start. Site engagement is not a procedural step, but a relationship built over time. Technology reduces burden only when shaped by empathy, context, and understanding.

Rare disease communities such as The Marfan Foundation understand this instinctively. When systems fall short, patients and families organize, advocate, and collaborate more intentionally. In doing so, they model what the broader system aspires to scale: trust, continuity, shared language, and partnership. People do not fragment their lives the way systems fragment care.

When Experience Finally Counts

At SCOPE, this question becomes practical rather than theoretical. I moderate a fireside chat with StuffThatWorks executives Yael Elish and newly appointed CEO Julie Ross, exploring what happens when patient experience is treated not as a marginal input but as the foundation of artificial intelligence itself. Billions of dollars are invested in pre-clinical discovery, yet clinical trials remain a costly bottleneck, often stretching beyond seven years before therapies reach patients.

One story from the book captures why this matters. A woman living with a chronic autoimmune condition follows treatment guidelines faithfully yet struggles with side effects that force her to stop therapy repeatedly. Her medical record reflects non-adherence, not struggle. It is only when she joins a patient-driven community where thousands share lived experience that patterns emerge her clinicians have never seen.

Within weeks, she learns how others adjust dosing, manage side effects, and balance treatment with daily life. When these experiences are aggregated and analyzed, they do not contradict clinical science. They complete it. What once looks like noise becomes a signal when the human story is allowed to remain intact.

This is why patient-derived models matter. Real-world evidence is not simply post-market surveillance. It is the accumulated story of how people actually live with disease, navigate treatment, and make trade-offs that controlled environments rarely capture. These data are not neutral artifacts. They are lives rendered into patterns with meaning.

Restoring What Was Lost

What I witness in quiet rooms, at signing tables, and in conversations that follow readings is not resistance to science. I see the same truth as a fireside chat moderator, alongside people dedicated to bridging patient voice, data, and science in ways that honor those it seeks to serve. What emerges, again and again, is a longing for connection.

People are not asking to be spared complexity, nor do they believe science belongs only in a sterile laboratory. They are asking not to be erased by it. They want science that recognizes them even as it advances, and systems that remember who they are designed to serve.

This is where Why People Matter ultimately resides. Healing does not begin when systems are optimized or when data moves faster. It starts when relationships are restored and when people feel recognized within the structures meant to help them. Science advances when trust is present, and trust grows when listening is treated not as an accessory but as a foundation.

If there is a path forward, it is not found by choosing between humanity and innovation. It is found by refusing to separate them. Data matters because people do. And when science remembers that progress becomes worthy of the lives it touches.

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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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Department of Health and Human Services Secretary Robert F. Kennedy Jr. has floated a seismic idea: adding autism to the list of conditions covered by the Vaccine Injury Compensation Program. The program, known as VICP, provides a system for families to file claims against vaccine providers in cases in which they experience severe side effects. Kennedy has also suggested broadening the definitions of two serious brain conditions — encephalopathy and encephalitis — so that autism cases could qualify.

Either move, experts warn, would unleash a flood of claims, threatening the program’s financial stability and handing vaccine opponents a powerful new talking point.

Legally, HHS “is required to undergo notice and comment rulemaking to revise the table,” said Richard Hughes, a law firm partner who teaches at George Washington University. The “table” is a list of specific injuries that the U.S. government accepts as presumed to be caused by a vaccine if those injuries occur within a certain time window. If someone can show they meet the criteria, they have a simpler path to securing compensation without having to prove fault. Autism is not in the table because a link between vaccines and autism has been thoroughly debunked.

If autism is added, Hughes explained, the VICP could face “an exorbitant number of claims that would threaten the viability of the program.”

Asked about its possible plans, an HHS spokesperson told CBS News the agency does not comment on future or potential policy decisions.

Carole Johnson, former administrator of the Health Resources and Services Administration, which oversees VICP, cautioned that the system is already overburdened: “The backlog is not just a function of management, it’s built into the statute itself. That’s important context for any conversation about adding new categories of claims.”

Dorit Reiss, a law professor at the University of California College of the Law-San Francisco, said that any such change would be exploited: “This can, and likely will, be used to cast doubt on vaccines.”

Compensation Without Causation

The Vaccine Injury Compensation Program was born of crisis. In 1982, “Vaccine Roulette,” a television documentary, aired nationwide, alleging routine childhood shots were causing seizures, brain damage, and even sudden infant death. The program alarmed parents and triggered a surge of lawsuits against vaccine makers.

“That led to a flood of litigation against vaccine makers,” recalled Paul Offit, a pediatric infectious disease specialist and vaccine inventor at the University of Pennsylvania. “I mean, to the point that it drove them out of the business. … By the mid-1980s, there were $3.2 billion worth of lawsuits against these companies.”

Were it not for the VICP, Offit said, “We wouldn’t have vaccines for American children. The companies — it wasn’t worth it for them.”

The National Childhood Vaccine Injury Act of 1986 created a no-fault system. Families who believed a vaccine caused harm could file a claim; if the injury appeared on the table within a set time frame, compensation was automatic. If not, claimants could present medical evidence. The system had two purposes: provide compensation and protect the vaccine supply.

From the beginning, the table was understood not as a scientific document but as a legal tool.

“It’s a legal document and things can be included for policy reasons even if the causation evidence is weak,” Reiss said. She explained, “The program is designed to be generous, to compensate in cases of doubt.”

But, she said, “autism is not in that category. The science is clear. Adding it would be pure politics.”

This tension — between law, science, and public perception — has defined the program for nearly four decades.

What Expansion Would Mean in Practice

Since 1988, federal data shows more than 25,000 petitions to the VICP have been adjudicated; of those, 12,019 were granted compensation and 13,007 were dismissed. About 60% of compensated cases involved negotiated settlements in which HHS drew no conclusion about the cause. Over the same period, billions of vaccine doses were safely administered to millions of Americans.

Adding autism to the VICP table would change that picture overnight.

Federal estimates suggest up to 48,000 children could qualify immediately under a “profound autism” standard, with potential payouts averaging $2 million per case, at an initial cost of nearly $100 billion, followed by annual totals of about $30 billion a year — dwarfing the current $4 billion trust, a new analysis finds.

“Any case where the symptoms appeared in the past eight years and the parents blame vaccines,” Reiss said. “I don’t know how many that would be. The fund has a surplus of over $4 billion. One seriously disabled child’s care can cost millions, so a significant number, say 100,000 compensations, might exhaust it.”

Furthermore, with only eight special masters handling cases, the system would also be paralyzed by backlogs.

The stakes are not just fiscal. If the fund collapses under the weight of autism claims, vaccine makers may question whether producing vaccines for the U.S. market is worth the risk. That would mirror the crisis of the 1980s, which led to the establishment of the VICP.

Autism and the Courts

In the late 1990s and early 2000s, Andrew Wakefield’s now-retracted paper alleging a link between the MMR vaccine and autism fueled a surge of VICP claims. By 2002, the VICP was swamped with petitions alleging vaccines had caused autism. The court consolidated thousands of cases into the Omnibus Autism Proceedings, selecting a handful of test cases to decide them all.

After years of hearings and expert testimony, the conclusion was unequivocal: vaccines do not cause autism. In 2010, the court ruled against petitioners on every theory of causation. The U.S. Court of Federal Claims affirmed, and the Court of Appeals upheld, the decision.

“That precedent is binding,” said Richard Hughes, a vaccine law expert at George Washington University and former VICP legal counsel. “Autism was litigated thoroughly and rejected. That still carries weight in the court today.”

The Ghost of Hannah Poling

Yet, the vaccine-autism debate has never quite faded. In 2008, the government conceded a case involving Hannah Poling, a girl with a rare mitochondrial disorder who developed autism-like symptoms after vaccination. Officials stressed the concession was specific to her condition, not evidence of a general link. But headlines told another story: “Family to Receive $1.5 Million in First-Ever Vaccine Autism Court Award.”

The Poling case fueled years of confusion.

Autism Science Today

The science is clearer than ever. Autism begins early in pregnancy, not in toddlerhood when most vaccines are given.

“Vaccinations … happened around the time families were recognizing symptoms of autism in their children,” said Catherine Lord, a UCLA clinical psychologist and specialist in autism diagnosis. “However, we now know that autism begins much earlier, likely as the fetus develops during pregnancy, so it cannot be an explanation.”

Peter Hotez, a pediatric infectious disease specialist and vaccine scientist at the Baylor College of Medicine who is also the father of a young adult with autism, underscores that point: “The drivers of autism are genetics and, in rare cases, environmental exposures during pregnancy, not vaccines. We’ve been over this ground for decades, and the evidence is overwhelming.”

Sarah Despres, former legal counsel to the secretary of Health and Human Services in the Biden administration and now a consultant to nonprofit organizations on immunization policy, adds that the compensation program itself is often misunderstood.

“The table was originally written as a political document,” she said. “The purpose of the program was to be swift, generous, and fair. … There would be cases that may not be caused by the vaccine but would be compensated if you went through this table injury scheme, where you don’t have to prove causation.”

What’s at risk: Harm from the Diseases Themselves

The stakes are not abstract. Measles, one of the most contagious pathogens on Earth, spreads so efficiently that one infected child can transmit it to 90% of susceptible contacts. Before vaccinations began in the 1960s, measles sickened hundreds of thousands annually in the U.S., killing hundreds and causing thousands of cases of encephalitis and lifelong disability. Complications included pneumonia, brain swelling, and, in rare cases, a fatal degenerative brain disorder called subacute sclerosing panencephalitis, or SSPE, that can strike years later. This year, a school-age child in Los Angeles County died of SSPE after contracting measles in infancy, before being eligible for vaccination.

Mumps was once a near-universal childhood illness. Though often dismissed as mild, it can cause sterility in men, meningitis, and permanent hearing loss. Outbreaks on college campuses, as recently as the 2000s, showed how quickly it can return when vaccination rates slip.

Rubella, also known as German measles, is mild in most children, but can be devastating during pregnancy. Congenital Rubella Syndrome, or CRS, caused waves of tragedy before the development of the vaccine: Thousands of babies each year were born blind, deaf, with heart defects, or with intellectual disabilities. In medical texts, autism itself is listed as one of CRS’ sequelae, or possible consequences — proof that rubella infection, not vaccination, can contribute to developmental disorders.

Measles, mumps, and rubella “are not trivial,” said Walt Orenstein, former head of the Centers for Disease Control and Prevention’s immunization program. “Fever, high fever, is common … and they have frequent complications.”

And yet, as these diseases fade from living memory, a counternarrative has gained traction. On Sept. 29, the nonprofit Physicians for Informed Consent, a group that disputes the scientific consensus on vaccines, announced it had mailed its “Silver Booklet” on vaccine safety to every member of Congress, as well as to President Donald Trump and Vice President JD Vance. The book claims that “vaccines are not proven to be safer than the diseases they intend to prevent,” and calls on federal leaders to punish states that restrict vaccine exemptions. (The booklet isn’t free. The group sells copies for $25 on Amazon.)

Scientists say this framing misrepresents the basic math of risk. “Measles is one of the most important infectious diseases in human history,” notes “Plotkin’s Vaccines,” the field’s authoritative textbook. “The widespread use of measles vaccines in the late 20th and early 21st centuries led to a further marked reduction in measles deaths. Measles vaccination averted an estimated 31.7 million deaths from 2000 to 2020.”

Kennedy’s possible move to expand the Vaccine Injury Compensation Program hinges on casting doubt — on suggesting that science is unsettled, that vaccines may be riskier than diseases.

“One tactic used to argue that vaccines cause autism is the use of compensation decisions from the National Vaccine Injury Compensation Program to claim such a link,” said Reiss of UC Law-San Francisco. “Even the cases that most closely address the question of vaccines and autism do not show the link that opponents claim exists, and many of the cases used are misrepresented and misused.”

Offit underscores the danger on the perception side. “When people see the Vaccine Injury Compensation program, they assume that any money that is given is because there was a vaccine injury,” he said.

Kathryn Edwards, an expert in pediatric infectious diseases and vaccine safety at Vanderbilt University, said, “Expanding compensation for issues that are not clearly related to vaccines … suggests that these conditions are related to vaccines when they are not.” She compared it to the removal of thimerosal, a preservative dropped from most childhood vaccines to ease public fears, despite no evidence of harm. “Now, we are still suffering from that action.”

Public health experts stress that such narratives invert reality. The very diseases being downplayed once killed or disabled tens of thousands of American children each year. As pediatrician, psychiatrist, and medical historian Howard Markel put it: “Back a hundred years ago, everybody lost a kid or knew a kid who died of one of these diseases. … We never conquer germs, we wrestle them to a draw. That’s the best we do. And so this is a real … handicap to the other side, the microbes who live to infect.”

Families and the Future

The hardest voices to reckon with are those of families. Parents of autistic children often feel abandoned — unsupported by disability programs, exhausted by care needs, searching for answers. Kennedy’s appeal to them is emotional, not scientific.

Reiss noted that families deserve far more support but argues that it shouldn’t come through VICP.

“The program is to award compensation to those injured by vaccines,” she said. “We should have more direct support — disability funding, disability aid. Kennedy has been taking HHS in the opposite direction, cutting services where we need more.”

Despres made the same point: “The goal of the program really was if there’s a close call, we’re going to err on the side of compensation. … And it’s really important that everyone understands that compensation does not mean that the vaccine actually caused the injury. … And I think we have seen statistics around the compensation program misused by those who would want to sow distrust in vaccines, to say vaccines are unsafe, when in fact … that’s not what this is.”

UCLA’s Lord urged a shift in focus. “For the last 50 years, science has focused on the biological causes of autism, which has led to great progress, especially in genetics,” she said. Of Secretary Kennedy, she said, “He could help more by acknowledging the value of science, but also the need to better attend to the actual lives of autistic people and their families.”

What Comes Next?

If Kennedy decides to move forward with such a plan, HHS would need to draft a rule, open it to public comment, and then defend the change in court. The pushback will be fierce: from scientists, from public health leaders, and from families who fear being misled yet again.

The debate over adding autism to the Vaccine Injury Table is not just a policy debate. The program was built on the principle of compensation without causation, a fragile balance designed to sustain both trust and supply. Adding autism could collapse that distinction entirely.

[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 — the independent source for health policy research, polling, and journalism.]

The post Inside the High-Stakes Battle Over Vaccine Injury Compensation, Autism, and Public Trust appeared first on Medika Life.

The proper terminology is “epistemic injustice,” whereby a person’s concerns are dismissed by someone else, causing that person to question their own perception of reality, or to make them feel “crazy.”

The article was describing the experiences of patients who were referred to a specialized clinic for vulvovaginal disorders. When I read the article and the term “medical gaslighting,” I reached out to the primary author, Dr. Chailee Moss, to have her come on my podcast (the link the episode is at the end of this article) to discuss her article and the “medical gaslighting” itself.

The findings of the article were eye-opening: less than half of patients said that past practitioners were supportive; a little more than a quarter were actually belittling, and one fifth were described as not believing the patient. What shocked me was that 20.6% of patients were given a recommendation to drink alcohol to relieve their symptoms. Moreover, 16.8% of patients felt unsafe during a medical encounter and 39.4% said they were made to feel crazy.

The actual narrative responses were also instructive, and they are reproduced here:

The most important takeaway from the article and my conversation was that we must do all that we can to ensure patients feel heard. Even if we can’t find something specific to treat, we should do our utmost to ensure that patients’ concerns are not perceived as being dismissed. This applies to all specialties, including critical care. Also, “drink more alcohol” should NEVER be a medical recommendation, in my opinion. It was a very important lesson for me, and it is one I will do my best to remember every day of my practice.

Listen to the podcast episode: https://www.healthcaremusings.com/the-freedom-fighters-of-medicine/

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Medika Life has covered the halls of JPMorgan in San Francisco, ViVE in Nashville, and the Digital Health Summit in Boston. But the outreach received before BIO—from stakeholders in Austin, Belfast, Milan, Riyadh, and Tulsa—suggested something seismic was shifting. At BIO 2025, that story came into focus: a world where health innovation is no longer limited by geography but defined by vision, investment and intention.

The Biotechnology Innovation Organization isn’t just where technologies are launched and global biotech identities are shaped. What we witnessed in Boston this year wasn’t just presence, but purpose. From Riyadh to Milan, leaders arrived not merely to exhibit, but to engage. They came to say, ‘We are here. We are investing. We are innovating.’ BIO 2025 stood out for its sheer scale and energy—a mosaic of emerging voices ready to help steer the next wave of life science breakthroughs.

Global Trends: Infrastructure, Incentives and Inclusion Drive Expansion

A common thread across these rising biotech regions is the power of public-sector catalysts. Investment in R&D tax credits, translational research centers, and workforce training has de-risked innovation for early-stage companies. Regions like Oklahoma and Northern Ireland exemplify how government partnerships with academia and industry can create a vibrant life sciences pipeline.

In parallel, digital innovation is enabling smaller regions to leapfrog traditional limitations. AI-led discovery, digital twins, and virtual trial platforms are reducing costs and increasing speed-to-data. This convergence of science and software is helping new hubs like Austin and Riyadh accelerate globally competitive capabilities in diagnostics, personalized medicine, and regulatory science.

“We’re not competing with Boston—we’re complementing it,” said a delegate from Invest Northern Ireland. “In a connected world, biotech ecosystems aren’t isolated—they’re collaborative nodes on a global grid.”

Meanwhile, leaders from Italy’s Ministry for Foreign Affairs and Saudi Arabia’s SFDA emphasized the importance of regulatory agility. Their message was clear: modern biotech requires modern policy. Whether through centralized ethics boards, digital review platforms, or alignment with international standards, regulatory transformation is essential to scale innovation.

These developments signal a broader inflection point—biotech is no longer about place. It’s about purpose, policy, and partnerships.

Austin: Where Tech Meets Translational Medicine

Austin is no longer just the city of live music and digital startups. With more than 300 life science companies and a 74% employment boom in biotech over the past five years, it’s transforming into a powerhouse of translational medicine.

Heavyweights like Thermo Fisher, Natera, and Luminex now call Austin home, joined by trailblazers such as Paradromics, Elligo Health Research, and Prophase Biostudios. These companies blend biotech, medtech, and AI in ways that are shaping the next frontier in diagnostics, therapeutics, and digital health.

“As one of the country’s fastest-growing emerging life sciences hubs, the Austin region is responsible for a significant portion of the biotechnology sector’s growth in Texas,” said Ed Latson, CEO of Opportunity Austin. “Our tech talent, VC ecosystem, and institutions like UT Austin are driving an uptick in innovations, with over 350 life science patents issued to Austin companies in the past five years.”

Austin’s 4.4 million square feet of science innovation space—plus another 1.1 million square feet under construction—signals that this rise is more than momentum. It’s movement.

Italy: From Scientific Legacy to Global Scale

Italy’s BIO 2025 pavilion was both a showcase and a statement: this country is stepping into biotech leadership. Long known for its academic excellence, Italy is now connecting its research infrastructure to industrial manufacturing and global markets.

With 770 production sites and the largest Contract Development and Manufacturing Organization output in Europe (€3.6B), Italy is scaling up innovation across oncology, AI diagnostics, and organ-on-chip development. Companies like BiomimX, Math Biology, Genenta Science, and InSilicoTrials are bridging cutting-edge science with clinical utility.

“Italy’s presence at BIO Boston reflects years of work by the Italian Trade Agency to promote an integrated system of scientific expertise, high-tech supply chains, and a talent-rich ecosystem,” shared Erica Di Giovancarlo, Director of the ITA New York Office.

Initiatives like the Montalcini Global Biotech Tour and policy instruments from the Ministry for Foreign Affairs support this ambition.

“Pharma is one of Italy’s top global exports,” noted Mauro Battocchi, Director General. “That would be unthinkable without a strong base in R&D, regulation, and manufacturing.”

Northern Ireland: Precision Science with Global Reach

With 250+ companies and $2.5 billion in revenue, Northern Ireland’s life sciences sector has grown 75% in just three years. The delegation to BIO was led by Invest Northern Ireland and featured companies from drug discovery (AMPLY), CRO services (Almac, Celerion), and diagnostics (Randox).

Queen’s University Belfast and Ulster University deeply anchored the region’s ecosystem. Global companies are noting that Celerion recently relocated its UK Phase I operations to Belfast’s new iREACH facility, betting on local talent and translational research capacity.

From scientific rigor to export capability—145+ countries and counting—Northern Ireland proves that locale doesn’t limit global vision.

Oklahoma: Equity-Focused Innovation with Local Roots

Oklahoma’s biotech renaissance is rooted in intentionality—it is focused on equity, local workforce development, and community-based innovation. Biosciences now contributes more than $16 billion to the state’s economic impact, with more than 750 companies and 42,000 jobs.

The Oklahoma delegation at BIO emphasized sustainability, manufacturing, and health equity, with standout organizations including Wheeler Bio, BioTC, ParaNano, and Utopia Plastix.

“We’re not here to be a branch office,” one delegate told me. “We’re here to bring Oklahoma’s soul to the bioscience table.”

With significant support from the Oklahoma Center for the Advancement of Science & Technology (OCAST), OKBioStart, and the University of Oklahoma, this state is redefining what it means to be an innovation hub.

Saudi Arabia: A New Powerhouse for Biotech Partnerships

Saudi Arabia came to BIO with a clear strategy and global ambitions. Led by His Excellency Prof. Dr. Hisham Saad Aljadhey, CEO of the Saudi Food and Drug Authority (SFDA), the Kingdom made its voice heard across two key sessions.

At “Global Biotechnology at a Crossroads,” Dr. Aljadhey discussed Saudi Arabia’s modernization of clinical trials and regulatory frameworks, aligning with international standards. At “Partnering for Progress,” he showcased the Kingdom’s integrated biotech ecosystem, spanning R&D, data, manufacturing, and patient care.

Beyond BIO, the SFDA delegation engaged with Harvard University and global pharmaceutical leaders and joined a private sector roundtable hosted by BIO and the U.S. Chamber of Commerce. These engagements reflect Saudi Arabia’s commitment to cross-border collaboration, secure supply chains, and sustainable innovation infrastructure.

With leaders from the Saudi Ministry of Health, King Faisal Specialist Hospital, and the National Institute of Health also in attendance, the message was clear: Saudi Arabia is ready to be a regional biotech hub with global reach.

The New Map of Global Innovation

This isn’t just a reshuffling of zip codes. It’s a redrawing of the innovation map—pushed forward by ecosystems committed to inclusion, science, sustainability, and scale.

These five rising regions aren’t simply showing up. They’re standing up—challenging legacy thinking, collapsing silos, and reminding the world that leadership in life sciences doesn’t require a familiar address. It requires ambition, alignment, and action.

At BIO 2025, the message was unmistakable: where you innovate matters less than why you innovate—and for whom.

From Austin’s AI-powered translational medicine to Saudi Arabia’s regulatory reinvention, the next wave of breakthroughs will be shaped not by old borders but bold commitments.

Expectations are high. Patients in Milan and Muskogee, Belfast and Boston, Riyadh and Rochester are not waiting for innovation to trickle down. They are looking globally—for the fastest path to solutions that sustain and save lives.

The future of biotech is already in motion. It’s inclusive. It’s intentional. And it’s unstoppable.

The post BIO – Biotech Without Borders  appeared first on Medika Life.

When I asked him what sparked joy — my now-standard question for new consults — he didn’t hesitate.

“Travel,” he said, his eyes lighting up. “Dozens of countries. I love learning how people live, eat, think.”

Then he paused. “But if I had to choose just one?”

He leaned forward, almost conspiratorially.

“Japan. Lived there over 25 years.”

I perked up. “Hontō ni?”

“Eh? Hontō hontō!” he beamed.

And just like that, the oncology suite turned into an izakaya.

We chatted in Japanese for several minutes — I, a Black man from the Pacific Northwest with a Japanese wife and a daughter who had attended college in Kyoto; he, a white man with a surprising Tokyo accent and stories that could have filled a dozen ryokans.

The nurses outside the curtain must’ve been baffled.

There we were: two middle-aged men, dressed like surgical extras, speaking rapid-fire Japanese about onsen, natto, and konbini snacks.

In radiation oncology, these are the moments you don’t forget.

The Kind of Joy You Can’t Buy

When our conversation drifted back to English, we kept circling the same theme: experience.

He told me about sleeping in the Sinai desert under a blanket of stars.

About sipping strong coffee in Addis Ababa.

About riding motorcycles through Southeast Asia before Google Maps existed.

What he didn’t talk about were things.

No fancy watches.

No new Teslas.

No gadgets.

Just the texture of moments lived.

And it hit me: the joy that lit up his face wasn’t the kind you get from opening a box.

It was the kind you earn by stepping into the unfamiliar. The kind that asks something of you — and gives back more than it takes.

The Science of Why It Feels So Good

We tend to think happiness is about comfort.

But psychologists like Dr. Laurie Santos (of Yale’s wildly popular Science of Well-Being class) suggest that the happiest people spend less on stuff and more on experiences.

Why?

Because of experiences:

• Give us stories we can retell
• Bring us into contact with others
• They are often tied to personal growth
• Don’t lose their sparkle the way objects do

A new phone gets old fast. But your first tuk-tuk ride in Bangkok? That stays with you.

There’s even a term for the trap we fall into with material things: hedonic adaptation.

The idea is that we quickly get used to new pleasures.

The house, the car, the clothes — they stop thrilling us.

But experiences?

They stay vivid.

I wrote about a similar theme in 10 Tiny Habits That Make You Healthier, Calmer, and Harder to Kill — the idea that intentional living creates lasting joy, not just fleeting dopamine hits.

My Favorite Journeys

Some of my favorite travel memories come from places that required a little more effort than, say, Paris or London.

• Egypt: navigating the frenetic, poetic chaos of Cairo traffic, then standing in stillness before the pyramids.
• Turkey: sipping tea in the shadow of the Blue Mosque, hearing the call to prayer echo across centuries.
• Japan: of course — always Japan — with its contradictions, its grace, its reverence for detail.
• Indonesia: maybe my favorite of all, where time moves differently and kindness is a national trait.

These places didn’t just offer a change of scenery. They offered a shift in me — the way I saw others, the way I understood culture, the way I experienced time.

What Travel (and Cancer) Teaches Us

My patient and I shared one more truth that day: that illness, like travel, strips you down to what matters.

It makes you see the world in a different light.

It humbles you.

And if you let it, it can open you.

Sometimes I think the best journeys aren’t measured in miles, but in mindset.

You don’t have to get on a plane.

You just have to notice something new.

Final Thoughts

That day in the exam room, two men with nothing in common on paper laughed like old friends, because we shared a language — and not just Japanese.

We shared curiosity.

And in that moment, amid machines and masks and schedules, we were both simply human.

Let the numbers tell the story.

• Free Download: “Debunked: 7 Health ‘Facts’ That Are Quietly Hurting You — Grab It Here.”
• Liked this story? Read “25 Ways to Reduce Your Cancer Risk” or “What Dying Men Confessed When No One Was Listening.”

Author bio: Michael Hunter, MD, is a cancer doctor, travel junkie, and collector of patient wisdom. His new ebook, What Dying Patients Taught Me About Living, is available here.

P.S. If this story resonated with you, follow me for weekly insights from the clinic and beyond.

The post Clinic Notes: I Didn’t Expect to Speak Japanese Today appeared first on Medika Life.

After cardiac surgery, patients are at risk for both high and low blood sugar, which can lead to serious complications. Managing these fluctuations requires careful insulin dosing, but existing protocols often fall short due to the unpredictable nature of ICU care and differences among patients, say the investigators. 

To address this challenge, the research team created a reinforcement learning model, named GLUCOSE, that recommends insulin doses tailored to each patient’s needs. In tests using data from real-world ICU cases, GLUCOSE matched or even outperformed experienced clinicians in keeping blood sugar levels within a safe range—despite having access to only current patient data, while doctors used full patient histories. 

“Our study shows that artificial intelligence can be thoughtfully and responsibly developed to support, rather than replace, the clinical judgment of health care professionals,” says co-senior corresponding author Ankit Sakhuja, MBBS, MS, Associate Professor of Medicine (Data-Driven and Digital Medicine) and a member of the Institute for Critical Care Medicine at the Icahn School of Medicine at Mount Sinai. “In complex and high-pressure environments like the ICU, tools like GLUCOSE can provide real-time data-driven guidance tailored to individual patients. This kind of decision support can enhance safety, reduce the risk of complications, and ultimately allow clinicians to focus more of their attention on critical aspects of patient care.” 

The research team trained GLUCOSE using reinforcement learning, which allowed the system to learn optimal decisions through trial and error. They also used advanced methods—conservative and distributional reinforcement learning—to ensure the model made cautious, reliable recommendations. The model was then rigorously evaluated and compared to real-world clinical practices. 

While the results are promising, the researchers caution that GLUCOSE is not intended to replace doctors. It serves as a clinical decision support tool, offering suggestions that physicians can choose to follow based on their judgment and the broader clinical picture. 

The model could eventually be integrated into electronic health record systems to provide real-time insulin dosing guidance in the ICU, helping reduce complications and improve outcomes. Future steps include adapting the tool for use in other hospital settings, running clinical trials, and exploring ways to integrate it into routine care. 

One current limitation is that the model does not yet factor in nutrition data, which may affect longer-term glucose control. Still, the ability of GLUCOSE to make accurate recommendations based on limited real-time data highlights its potential to enhance safety and efficiency in postsurgical care. 

“Our goal is to develop AI systems that meaningfully augment the capabilities of health care providers and ultimately improve patient outcomes,” says co-senior corresponding author Girish N. Nadkarni, MD, MPH, Chair of the Windreich Department of Artificial Intelligence and Human Health, Director of the Hasso Plattner Institute for Digital Health, and Irene and Dr. Arthur M. Fishberg Professor of Medicine at the Icahn School of Medicine at Mount Sinai, and Chief AI Officer of the Mount Sinai Health System. “By learning from real-world clinical data and delivering personalized recommendations in real time, models like GLUCOSE represent an important advance toward integrating trustworthy data-driven tools into the clinical workflow. This study offers a glimpse of how AI can be thoughtfully embedded into care to support providers in delivering safer, more precise treatment.” 

The paper is titled “A Distributional Reinforcement Learning Model for Optimal Glucose Control After Cardiac Surgery.” 

The study’s authors, as listed in the journal, are Jacob M. Desman, Zhang-Wei Hong, Moein Sabounchi, Ashwin S. Sawant, Jaskirat Gill, Ana C. Costa, Gagan Kumar, Rajeev Sharma, Arpeta Gupta, Paul McCarthy, Veena Nandwani, Doug Powell, Alexandra Carideo, Donnie Goodwin, Sanam Ahmed, Umesh Gidwani, Matthew A. Levin, Robin Varghese, Farzan Filsoufi, Robert Freeman, Avniel Shetreat-Klein, Alexander W. Charney, Ira Hofer, Lili Chan, David Reich, Patricia Kovatch, Roopa Kohli-Seth, Monica Kraft, Pulkit Agrawal, John A. Kellum, Girish N. Nadkarni, and Ankit Sakhuja. 

The study was funded, in part, by the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health grant 5K08DK131286, and by the Clinical and Translational Science Awards (CTSA) grant UL1TR004419 from the National Center for Advancing Translational Sciences. Research reported in this publication was also supported by the Office of Research Infrastructure of the National Institutes of Health under award numbers S10OD026880 and S10OD030463.  

See the journal paper for conflicts of interest: https://www.nature.com/articles/s41746-025-01709-9. 

About Mount Sinai’s Windreich Department of AI and Human Health   

Led by Girish N. Nadkarni, MD, MPH—an international authority on the safe, effective, and ethical use of AI in health care—Mount Sinai’s Windreich Department of AI and Human Health is the first of its kind at a U.S. medical school, pioneering transformative advancements at the intersection of artificial intelligence and human health.  

The Department is committed to leveraging AI in a responsible, effective, ethical, and safe manner to transform research, clinical care, education, and operations. By bringing together world-class AI expertise, cutting-edge infrastructure, and unparalleled computational power, the department is advancing breakthroughs in multi-scale, multimodal data integration while streamlining pathways for rapid testing and translation into practice.  

The Department benefits from dynamic collaborations across Mount Sinai, including with the Hasso Plattner Institute for Digital Health at Mount Sinai—a partnership between the Hasso Plattner Institute for Digital Engineering in Potsdam, Germany, and the Mount Sinai Health System—which complements its mission by advancing data-driven approaches to improve patient care and health outcomes.  

At the heart of this innovation is the renowned Icahn School of Medicine at Mount Sinai, which serves as a central hub for learning and collaboration. This unique integration enables dynamic partnerships across institutes, academic departments, hospitals, and outpatient centers, driving progress in disease prevention, improving treatments for complex illnesses, and elevating quality of life on a global scale.  

In 2024, the Department’s innovative NutriScan AI application, developed by the Mount Sinai Health System Clinical Data Science team in partnership with Department faculty, earned Mount Sinai Health System the prestigious Hearst Health Prize. NutriScan is designed to facilitate faster identification and treatment of malnutrition in hospitalized patients. This machine learning tool improves malnutrition diagnosis rates and resource utilization, demonstrating the impactful application of AI in health care.  

For more information on Mount Sinai’s Windreich Department of AI and Human Health, visit: ai.mssm.edu  

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“The fault, dear Brutus, is not in our stars, but in ourselves…”
— William Shakespeare, Julius Caesar.

That quote haunted me for years, long before I ever held a linear accelerator’s joystick or delivered radiation to a tumor curled around someone’s spine.

Back then, I didn’t fully grasp its relevance to my work.

Now, after decades in oncology, I see it with stark clarity.

Because here’s the truth:

Up to 42% of cancers are preventable — not through miracle drugs or genetic luck, but through modifiable, everyday choices.

This observation isn’t about blame.

It’s about power.

And it’s time we stopped whispering about it.

Even through the fog of risk, we can walk toward healing. 42% of cancers are preventable, and every step counts.

🔁 Why Cancer Isn’t Just Bad Luck: The Myth of Randomness

When patients hear “cancer,” the next question is often whispered:

Did I cause this?

It’s a painful, complicated moment.

I always remind them: no one deserves this, and no one gets cancer from one bad meal or missed screening.

But I also tell them we know that cancer is not a lightning strike.

Yes, some cancers come from sheer genetic chaos.

But others arise from a slow, silent drift, shaped by inflammation, environment, and habit.

🔁 Inflammation and Obesity: The Hidden Cancer Risks

You don’t see inflammation in the mirror. But it shapes your fate.

Low-grade, chronic inflammation — often fueled by excess fat, poor diet, poor sleep, and stress — is a known contributor to several cancers, including colorectal, breast, and liver.

Chronic inflammation in the etiology of disease across the life span – Nature Medicine

www.nature.com

We once thought of obesity as a cosmetic issue. Now we understand it as a biological amplifier of cancer risk:

• Fat cells release cytokines and estrogen-like compounds
• These can trigger DNA damage and tumor-promoting environments

I’m not judging anyone’s weight. I’m inviting a deeper understanding of how the body works — and how we can gently steer it.

Diseases desperate grown,
By desperate appliance are relieved,
Or not at all.”
— Shakespeare, Hamlet.

Sometimes, small daily shifts are our most potent medicine.

🔁 How Alcohol, Smoking & Diet Tip the Scales

If you asked me what four lifestyle changes would make the biggest impact on global cancer rates, I’d say this:

1. Stop smoking
2. Drink less alcohol
3. Eat more plants and fewer processed foods
4. Move

🥃 Alcohol

Alcohol is a group 1 carcinogen, the same class as tobacco and asbestos.³

It increases the risk for at least seven cancers, including breast and colorectal.

And even “moderate” drinking has risks, especially for those with other risk factors.

No level of alcohol consumption is safe for our health

. www.who.int. int.

🍽️ Diet

Ultra-processed foods cause inflammation, metabolic dysfunction, and now, higher cancer risk.

A 2023 study in The Lancet tied them to a 29% increased risk of colorectal cancer.⁴

It’s not about moral purity. It’s about stacking the odds in your favor.

Prevention Isn’t Perfection. It’s Daily Poetry.

When I talk to patients, I don’t hand them guilt. I hand them a possibility.

• A walk after dinner to quiet insulin spikes
• A decision to swap soda for tea
• A full night of sleep instead of doomscrolling

These things may seem small, but they are acts of devotion, not just to the body, but to the life it still wants.

Though this be madness, yet there is method in’t.”
— Hamlet.

Health is not about perfection. It’s about rhythm.

About small, quiet methods repeated until they shape destiny.

The Truth I Wish More People Knew

When people find out I’m a cancer doctor, they usually ask about treatments.

But the conversation I wish we had more often is this:

What can I do now, before the diagnosis, to change the story?

The answer isn’t sexy. It’s not a pill or a breakthrough headline.

It’s this:

Cancer isn’t always random. And your choices — however small — are not meaningless.

You deserve to know that.

A Gentle Invitation

I don’t write this to scare you.

I write it because knowledge is power, and silence is not protection.

Here’s the truth:

• Cancer is common.
• Up to 42% is preventable.
• That prevention is made of ordinary acts repeated with quiet courage.

What’s one habit you’ve changed for your long-term health? I’d love to hear.

The post Cancer Isn’t Random: What 42% of Diagnoses Have in Common — and How You Can Lower Your Risk. appeared first on Medika Life.

In this exclusive conversation, I join Hal Wolf, President and CEO of HIMSS, to explore HIMSS’s evolving role in fostering collaboration between hospitals, startups, and policymakers. With the health-ecosystem landscape tracking the early days of a new administration, uncertainties remain—ranging from regulatory shifts to funding allocations. Yet, as Wolf underscores, HIMSS remains steadfast in advancing health equity, supporting digital transformation, and offering actionable strategies that improve care delivery.

This conversation occurs between ViVE in Nashville and HIMSS in Las Vegas—two health gatherings that bring innovators, policymakers, and industry leaders together. While ViVE spotlights digital health startups, investment trends, and edgy sparks, HIMSS serves as the broader convening ground for professionals shaping the future of health information and technology. HIMSS is where the work happens—the “Davos” of health information.

Wolf outlines key issues such as integrating artificial intelligence in hospital systems, the role of primary care in driving better patient outcomes, and how organizations must balance innovation with financial realities. At HIMSS, essential dialogue between established institutions and emerging disruptors has never been more crucial.

Join us as we delve into the forces shaping the health system’s future—where technology, policy, and leadership converge to improve patient outcomes and system-wide efficiency.

Medika Life Editor Gil Bashe: In examining hospital systems, we focus on how information flows within our industry and who has access to it. We still have a lot to learn. These are the first few weeks of the new administration, and we don’t know how things will unfold, how the Senate Committees will approach these discussions, or how actions will be implemented. Will we rely on Executive Orders? If that’s the case, we know where to focus our attention. You’re a remarkable ambassador for the discipline and the sector, and certainly for HIMSS, a professional association, trade association, and global NGO.

People come to HIMSS with tremendous optimism, hoping to gain insights that will make them more effective. I prefer to focus on current developments and HIMSS priorities rather than just reacting to them; that’s a different conversation. I’ll also note that the administration’s conversation around health access, cost, and priorities is still in motion.

HIMSS CEO Hal Wolf: We don’t know enough to discuss new policies and their potential outcomes. One challenge will be securing funding. While we know things will be different, we don’t know where the policies will land. Still, we know that HIMSS is dedicated to its vision and mission statements as they fundamentally relate to realizing the full health potential of every human everywhere.

We are dedicated to health equity and will stay dedicated to it. Our collaboration with governments and NGOs worldwide and our fundamental principles will not change, nor should they! We’ll work with our principles within the context of whatever comes out of the White House.

We worked well with the previous Trump administration and collaborated effectively with ONC and HHS on various initiatives. We look forward to advancing the HIMSS mission within the established parameters.

Bashe: HIMSS is far more than an annual mammoth gathering; it’s a professional society that covers the full spectrum of health information and technology – from cybersecurity to economics to professional development and government policies. Unlike other popular meetings that primarily focus on networking, HIMSS is where professionals from around the globe come to set objectives, strategies, and operational priorities. It’s 30,000 feet and 3,000 in scope.

Wolf: This morning at 6:00 a.m., I had an interesting conversation with the CEO of a successful start-up that is getting distribution now and beginning to roll. At HIMSS, we see the merging of different worlds.

We have our core population, core members of the health ecosystem– hospitals, clinics, health operations, nurse practitioners, CMIOS, CIOS, physician leaders, and administrators. This group represents a significant portion of the HIMSS membership, which includes over 120,000 members.  

On the other hand, we have the entire global app ecosystem that drives innovation and introduces new ideas. As you know, many of these ideas and innovations are driven by personal experiences. A family member encountered a situation, and they tried to solve it. Or have worked in the industry, identified a gap, and pursued it.

They often have a long list of improvements to address, and, often, they aren’t performing well financially. Their reimbursement processes are a little murky, and this uncertainty might increase in 2025.

How much time do they have to integrate innovations that don’t directly impact their outcomes, quality, access or bottom line? Because everything’s being looked at in that piece.

We need to understand that the situation changes as the market evolves. What is the critical point where innovation intersects with standard operating procedures, and what does it look like? How can information from one area influence the other? We must determine how to identify the good and the bad and how to present them to the market.

What happens at the global conference? What happens in chapter meetings? What happens in the papers that are submitted? What happens in the insights? Much of this depends on how these elements connect.

Bashe: Many diverse health information communities come together yearly at HIMSS. You have consistently made this gathering relevant. This year, a new startup section called Emerge addresses a critical need within the HIMSS community. You just started with the story about a startup enterprise. Could you share some important and innovative aspects that will be highlighted at this year’s gathering?

Wolf: That’s a pressing question, so I’ll divide it into multiple parts because it’s challenging.

We’re part of the industry, so let’s return to your original premises to find the answer. You mentioned “competing,” which refers to people competing against each other. However, you also have specific points of interest to consider.

The benefit engine can determine how much money you’ll receive in reimbursement for a particular service. However, if you’re on the insurance or payer side, the configuration may depend on whether it’s for North America or a Ministry of Health. Here, the goal is to anticipate the costs incurred in treating a patient. This perspective aligns with an actuarial professional trying to understand and guide the process forward.

I’ve observed hospital systems are starting to integrate AI functionalities, but currently, only 5 to 7% are using it effectively, from an operational standpoint,

For example, when someone walks to the front desk and says their right arm is hurting, the staff collects the information by typing it into a form. They ask a couple of questions, such as “Who’s your primary care doctor? Who’s your insurance company? Are you on managed care? Is this new? What other ailments do you have? What other prescriptions do you have?” They must ask those questions if they don’t have that information readily available. That data feeds into new algorithms on the AI side.

In the background, AI analyzes the information and makes predictive models about how long this person would be in the hospital, what resources they will consume, and how much revenue it will generate. It’s occurring in the background, without the front desk staff being aware of AI’s calculations; meanwhile, the administrator is beginning to recognize the impact of these advancements. The inbound process begins with appropriate testing, questioning, and, if necessary, into a bed.

Meanwhile, the hospital administrator or the system managing the situation assesses the resources the patient will need, whether they will need a specialist and whether the specialist will be available when needed. By the time an exam takes place, they can inform the patient about what to expect in the next 24 to 48 hours, whether they will be staying at the hospital or going home. This preparation and communication represent the positive aspects of the process.  

The dark side is that the hospital engine in the background might say, “We’re not going to get a lot of money out of this. This is not a good use of our beds/time. If we maximize profits, we should send this person on and see what the next person will bring because our algorithm told us that five people would come in with congestive heart failure, and we do make money on that.”

The person writing this down may never realize what is happening; they won’t know that the system will indicate that the hospital is full, even though there might be capacity. Instead, they will tell the person to go down the street to Acme Community Hospital, which can take care of them, explaining that their system lacks resources. That is a dark coin flip to what could happen.

Bashe: Many hospital networks are acquiring primary care practices as feeder systems in their facilities. For example, if a patient is told, “You need to do a cardiac stress test. Do you have a cardiologist?” and they respond with “No?” the primary care provider can then say, “Why don’t you let me arrange that for you.” The primary care satellite site is closing the loop on a fragmented system. While the hospital system benefits economically from the service, patients benefit, and the primary care satellite site serves as a conduit for care.

I’m always thinking about the benefits of technology in enhancing the hospital and primary care systems. Imagine a doctor saying, “You know, you’ll have many questions. I will be here to help you frame your thinking around those questions. Our system has an LLM model. Let’s call it Dr. Hal. You can ask Dr. Hal every question regarding your congestive heart failure or prostate cancer. Dr. Hal is the composite wisdom of all the experts in our system and is here to address your questions.”

The creative aspect of our discipline, combined with information, is becoming a superpower. We use data to guide our supply chain resourcing and leverage information to promptly provide patients with confidence and comfort. We ensure greater access to accurate information vetted by the system, so patients do not depend solely on Dr. Google.

Wolf: The actual value of AI is knowledge management. It allows a very broad and capable synthesis of vast amounts of data and information that no human can keep up with. For example, in the 1970s, clinicians had access to three to four journals, where editors picked what was important enough to be published. These journals had to be printed and mailed out, resulting in about 400 peer-reviewed articles per year reaching healthcare professionals. If you read one a day, you could keep up. Today, more than 10,000 articles will be published this year alone. All that information, knowledge management, and sharing will occur collaboratively, and there is no way for anyone to synthesize all that.

AI plays a crucial role in operational and clinical decision support by turning information into knowledge, with recommendations that lead to changes in operations, suggestions, and care.

In clinical care, pharmacy, or whatever path you’re on, these recommendations are communicated back to physicians with an explanation of why they are a recommendation and the source of that information.

I think part of the maturity that we’re seeing, and you’ll see at HIMSS 2025, is the evolution of AI since our session three years ago. Back then, we held a session titled, “What is AI, and what does it mean?” The panel discussed its potential application in healthcare, and at that time, chat had just been introduced, and people were starting to look at it. Some people were on stage calling for a six-month hiatus before we allowed anything to go forward.

Last year, we saw glimpses of initial uses of AI being deployed operationally, albeit only in a few hospital systems. But it was beginning to happen, and we knew that AI was in the background of devices or operational considerations. Where would the benefit engines come from? The algorithms were starting to be built, and we had a particular point of looking out for biases. We started talking about biases within AI and realized that no matter what you do, there will always be some biases. It’s unavoidable. What was the source information for AI, and how do I ensure I utilize it to the best of my ability?

You’ll see the presentation of how people are using it on a scale. What are examples of its success, and what are some of its limitations? Numerous applications are set to emerge. You’re going to see them on the floor, where people are using components of AI in the background to produce better products that are more efficient and can guide operations as well as at-home care, and all those pieces are being brought forward. The common link between it and your point is on the information side of the house. How good is the starting information, and how broad does it go? Where is the opportunity from a linking standpoint?

To achieve this, a private-public partnership is essential. If you’re looking at algorithms and information that utilize global data that gets turned into global information, it has an impact. Most healthcare systems around the globe are publicly held. They’re not privately held. The United States is an aberration due to its vast amounts of privately held institutions versus publicly held ones.

Bashe:  Are you seeing more of that regarding the technology being used proactively?

Wolf: Yes, and that’s a good thing. We’ve always wanted to see that proper reimbursement takes place and proper services rendered. Many things in a system can get missed, but not an overwhelming amount.  If hospital systems perform well, they typically operate on a 2 percent to three percent margin, but many run at a loss, making proper reimbursements difficult. Large actuarial departments played a key role in the past, with various organizations providing revenue support, which was a huge thing even 15 years ago. However, over time, those efforts began to converge.

The real opportunity lies beneath the surface. It must coincide with an understanding of the care that was delivered. Right next to that benefit realization is the value proposition. What was the quality of what was rendered? Was the care appropriately given? Did we miss something in the diagnosis?

Bashe: One of the things that I worry about is not New York City or Los Angeles. Medical centers such as Mount Sinai, NYU Langone, Weil-Cornell, Columbia Presbyterian, and Memorial Sloan Kettering, much like their counterparts in Boston, Chicago, and the Bay area, provide excellent care. However, in rural America, someone can live three hours from a tertiary care center.

Your approach of using information to improve the care of almost 29 percent of the US population applies, I think, to other nations where people live far from centers of excellence. What are your thoughts about devices, wearables, remote patient monitoring and information, and protecting the information from your standpoint?

Wolf:  Wearables and home monitoring have transformed patient engagement, making health data more immediate and actionable. It’s fascinating. My wife and I compare our Oura daily. How did you sleep? How’s your heart rhythm? We’re finding the features and working through them. She lives anonymously. We are very engaged in our health. How far did we walk? What was our heart rate? Let’s do the 6-minute walk today and see. Were you snoring last night?

All of that is going on, and that’s an engagement level. The information flows from me to my ring, and then my ring says, do you want to share it with Apple? I said yes, and my wife said no; she didn’t want it to flow to another company. Apple will know how well I sleep – I don’t worry about it. If they want to dive into it, there is a profile about me and my general health. They could also derive that from the stuff I buy and the credit card information. That’s always been the case.

If you remember, back in the 1980s, we were already using demographic data with Donnelly overlays. I worked for Time Warner in the early 1990s when Time magazines were delivered to your door. The Time magazine that arrived at your next-door neighbor was different from yours—not the content, but the cover and the ads in the back. You may have gotten an ad for a sports car, and your neighbor may have gotten one for a minivan.

It was specifically designed based on the Donnelly reports, which provided insights about the household. We’re starting to shape recommendations at the personal level of the care an individual should receive.

Why wouldn’t a physician or a clinician want every piece of information on this Oura ring to be included in a patient’s profile? This information would help complete the picture needed to utilize sophisticated knowledge management systems, tapping into tens of thousands of research papers and combining that data with the person’s unique health details. The richer that information becomes, the more accurate it becomes, the more mistakes it makes, the more positively it helps the next person.

Bashe: Often, when I speak to doctors and nurses in the health system, we talk about the Electronic Medical Record (EMR). They’re candid: “We have an EMR system—it’s not perfect, we know that, and it’s getting better and better.” Yet, they often say, “Did you read that patient’s EMR data?” and then they’ll say, “I don’t have time to read the EMR.” While best practices come from committees, you play a unique role as an advisor to corporations. You’re the sounding board for major corporations, whether AWS, Epic, Microsoft, or Oracle. I’m sure they will listen to you because you’re the voice of the global community.

Wolf: We don’t have a dog in the race against them as a competitor.

Bashe: As a not-for-profit society that operates at a global NGO level, when you look at your role and the challenges you face, how does HIMSS address constant sector transformation? HIMSS and its members are constantly evolving because you represent applied information. The system is getting more interesting and more creative.

Look at the challenges that HIMSS owns and represents and your mission, which is obviously to improve access to care. As the organization’s leader, you’re clear and committed to this role, but you’ve seen difficulties implementing cultural or systemic changes.

What’s your guidance for the community? Please don’t take out a ruler and slap people on their hands. You’re obviously about supporting the system’s evolution, making it better. Can you share insights on how you’re filtering down best practices within this evolving landscape? How do you reflect on these challenges that arise and guide systems to understand that care is delivered to the front lines and is not always in hospitals? It’s specialists or primary care—physicians in their little offices worldwide.

Wolf: This is precisely what we discuss daily at HIMSS, and it’s central to our global work. Let’s walk through our view of the ecosystem and how we influence what you just related to because it’s our core.

Hospital systems – or, more importantly, governments worldwide – including our own, recognize their fundamental responsibility to care for their populations. Let’s set the United States aside for a second.

Ministries of Health in countries around the world are accountable for the well-being of their citizens. We’ll talk about citizens for a minute. The people living within their country want a healthy population, which improves the economy. They’re smart enough to know that a healthier population, or one cared for, efficiently reduces the constant increase in costs within healthcare systems. No one is looking to save money; instead, the goal is to slow the escalating costs of healthcare systems, which seem to rise every year.  

Information is the driver behind everything, but to your point, the combination of people, processes, and technology shapes the outcome. Technology is rarely an issue here; the challenge lies in implementing and changing culture. The pandemic forced a significant global cultural change, and while it may seem that it’s deeply in our rear-view mirror, its impact is still felt. Telemedicine, the idea of using information, and the idea of remote care to alleviate the pressures on the front line became a standard feature, and people recognize that.

We see the impact in our relationships with organizations like the WHO in Europe. Take Romania, for example, where we just signed an agreement to help them develop a strategic plan to deliver digital health transformation. HIMSS is focused on four major points.

1. First is digital health transformation.
2. Second is the deployment and utilization of AI as a tool.
3. Third is cyber security to protect that information and ensure that it works for the betterment of their ecosystem with less hassle.
4. Fourth is workforce development, which trains people to understand these tools before they can utilize them to their fullest extent.

Those are our four main areas. When we think about digital health transformation, we start with the HIMSS maturity models from five to seven years ago.

Back then, our maturity models were a checklist of technology. Do you have that technology? Are you wired? That used to be the baseline, what we now consider table stakes. It’s not table stakes anymore.

We’ve transformed our maturity models to reflect quality, access, correctness, and fundamental value. How are you using the information? How does it improve the flow?

From an IT standpoint, we began looking at our maturity models like a stack. It starts with the information layer. What does the infrastructure look like? How is it laid out? How does your data need to be laid out? Where does the electronic medical record go on top of that? How do those two pieces feed into each other? How do you utilize the radiology and the pictures that are in there? How does that flow? What’s your analytical layer? How does this work?

Where are you getting your information, and how are you handling your analytics? How does that tie itself back into the infrastructure? How does that information flow from your reporting back into your EMR and the data layer? How does that data layer tie in when discussing the imaging ecosystem? What’s your continuity of care, the CCMM? How does it flow across the board to ensure you’re not dropping a patient?

We’ve created a stack of maturity models that form the foundation of how information flows from the patient across hospitals, clinics, and homes, wherever the case is provided, to ensure you can keep up with them. And we present these maturity models not just as a technology checklist. Anyone can do that—it’s not meaningless—but anyone can do that. The true focus is on how you use these technologies.

How do you ensure that the relationship between the patient and pharmacy utilization, as well as the benefit realization, is maintained? And how does all this tie together?

Whether it’s community service, a hospital system, or a home, what we’ve created in those stacks is a blueprint that any hospital system, country, or large-scale region can use to identify the technology needed and deploy it for its maximum benefit. 

People do assessments in hospital systems. For HIMSS members in the United States, these assessments are part of the membership, allowing them unlimited access to evaluate their systems. They can conduct these assessments online, check their status, and aim for levels 6 and 7, which is when all those benefits kick in. That’s when we do our validations.

We also do white papers, thought leadership, and HIMSS events, panels and educational programs. More than 300 academic programs are coming up at HIMSS in 2025, with more than 150 offering CE credits.

But these experiences are all based on the output, what worked, and what didn’t work. As you know, learning from others’ mistakes is just as valuable as learning from their successes. Some of the most impactful lessons come from those who try something, fail, and then fix it.

That’s where HIMSS and advisory services come in. We’re presenting the aggregated global knowledge of what’s working and what isn’t.

Most ecosystems don’t work the same way the United States does because most don’t have the same amount of money invested in it. We draw from many healthcare systems- from the U.S., to Romania, Italy, Germany, Singapore, Indonesia, Malaysia and Australia. We learn from all these countries, bring it together in our membership, and figure out what we have learned. How does it impact the models? We do these reviews in a constant session. That’s how we make the society work.

Bashe: It’s a brilliant use of human capital and composite wisdom. As we’re gearing toward the end of our conversation, I wanted to ask you about the Emerge Innovation Experience– this is a first-time gathering, but the concept of start-ups at HIMSS is nothing new. What’s different now is that you’ve recognized that start-ups are a unique culture with unique needs. You’ve assembled a cohort of leaders dedicated to helping these start-ups succeed. What are your expectations from Emerge?

Wolf: First, I’m very interested in the outcome of Emerge. This is the first time that we’re going to try to bring that mesh point I mentioned earlier, where innovations meet operations. They’ve chosen some excellent examples of what can come forward. I think it’s got the right practicality and innovative forethought. From what I’ve heard from people involved in it and talking to people on the committee, I’ve listened to everything from “Wow! This is fantastic and very innovative!” to “It could have been stronger.”

If I talk to heavy innovator startups, they reply that it doesn’t go far enough and could be really “wow.” Meanwhile, those focused on operations often reply that it’s “really pushing the edge.” What that tells me is that it’s in the right mesh point.

What I’m curious to see is how it is received. Many smart people have been working on it, focusing on what will have the biggest impact on operations and be ready for prime time tomorrow, especially in areas like AI utilization and operational impact. What is one step beyond? We also have an incubator ecosystem there.

The Emerge Innovation Experience will be unique, and I look forward to that outcome.

Bashe: I always value your candor.

Wolf: Sometimes, I can get criticized for it, but I believe in absolute transparency. The beautiful part about thought leadership is that we share these thoughts, which makes HIMSS thrive. Transparency is a strength in a positive society. If we’re not transparent with each other, we can’t advance. My grandfather taught me a long time ago that the three most essential phrases in business are “I don’t know, I’ll find out, and I’ll get back to you.” “I don’t know” is critically important.

What’s beautiful about healthcare is that you learn something new every day. It’s impossible to be in the health sector without learning something new every day unless you don’t ask a single question, read nothing, or stay in a room and shut the door.  

Just today, I learned something about HIMSS. I didn’t know because I was asking about a process. A question was raised, and I followed the thread through the organization and found one I’d never seen before, which was exciting.

I appreciate the philosophical and real questions you’re asking. We’re excited about HIMSS 2025 and the learning opportunities it will offer. It’s also about the big picture of what’s happening globally. We call it the Global Conference because it brings together Ministries of Health and NGOs worldwide. It all comes together. This is our largest membership meeting, and we’re thrilled that there’s at least a 35% increase in people signing up for HIMSS membership compared to last year.

Bashe: I’ll be attending this year. As always, thank you for the in-depth exchange. *****

In this insightful conversation, Hal Wolf, President and CEO of HIMSS, explores the critical forces shaping the sector’s future. As industry and governments navigate a rapidly evolving policy landscape under a new administration’s eyes, hospital systems, startups and policymakers must adapt to changing regulations, funding challenges, and digital transformation. Wolf highlights HIMSS’ role as a global leader in uniting a diverse ecosystem to advance health equity, interoperability, and patient-centered care.

A key theme of the discussion is how data and AI are transforming payer, provider and product innovation operations – how information can improve people’s lives. Wolf explains how AI-driven predictive models are integrated to optimize patient care and resource allocation. However, he also warns of ethical concerns—such as the potential for financial-driven decision-making that could prioritize revenue over patient needs. HIMSS plays a vital role in ensuring there is a balance between digital health innovation aligns with quality care and equitable access.

As digital tools, AI, and large language models (LLMs) become more integrated into healthcare, Wolf and Bashe discuss how these advancements can empower providers and patient-enhancing decision-making, improving operational efficiency and offering trusted, system-vetted health information.

As HIMSS prepares for its annual global conference, Wolf emphasizes its role in shaping industry priorities. HIMSS is not just an event; it’s a society that defines strategies, policies, and innovations that drive the future of health. With an expanding ecosystem of startups and industry veterans, HIMSS remains a pivotal force in bridging technology, policy and patient care.

The post The Future of Health Information and Innovation: A Conversation with HIMSS CEO Hal Wolf appeared first on Medika Life.