Engaging that question informed “The Science Trust Conundrum: When Society Doubts Its Own Progress,” a planned discussion at the Oct. 29 Galien Foundation Forum at the New York Academy of Medicine. Bringing together the daylong Forum’s life sciences and patient-focused tracks, the panel examined a perplexing challenge: Scientific progress must be evaluated through discovery, and through the experiences of the people it is intended to serve.

Jeremy Levin, co-founder and executive chairman of Ovid Therapeutics and former chair of BIO, an industry leader whose journey has guided two global biopharma companies, guided the discussion with questions that built on each response. With Margaret (Peggy) Hamburg, MD, former FDA commissioner and co-president of the InterAcademy Partnership; Vardit Ravitsky, PhD, president of the Hastings Center for Bioethics; Julie Fleshman, JD, MBA, president and CEO of the Pancreatic Cancer Action Network; and this author, he connected questions of evidence, ethics, institutional conduct, patient experience and public communication.

The standing-room-only audience listened closely. At times, you could hear a pin drop, particularly when the discussion moved from the principles institutions profess to the consequences of decisions that affect people – people seeking solutions to health challenges. Levin set the conversational direction early: “Scientific progress doesn’t guarantee public trust.” The next question was whether the source of doubt lies in science itself or in the human systems speaking in its name.

What Do People Actually Doubt?

Levin opened with a question to Ravitsky: “When somebody says, ‘I no longer trust science,’ do they mean the scientific method or the people or the institutions claiming to speak for it?” The distinction matters because scientific inquiry, institutional authority and individual behavior are related, but they are not the same thing.

Ravitsky described the gap between confidence in individual health professionals and skepticism toward institutions. People may look into the eyes of a nurse or physician and experience competence and concern directly, while an agency or health system can feel distant and inaccessible. Scientific expertise also competes with a growing universe of self-appointed authorities, from social media personalities to people who confuse access to artificial intelligence tools with equivalent clinical or scientific judgment.

Rather than directing frustration toward an uninformed public, Ravitsky proposed a more demanding standard for experts and institutions. “Trustworthiness shifts the perspective,” she said. “It asks us, the experts, how do we become trustworthy? How do we earn your trust? How can we do better?” Her point reframed the problem: Institutional credibility must be examined through conduct, not simply asserted through credentials.

The implication reaches well beyond public education. When an institution asks people to accept a conclusion, it should be prepared to explain the evidence, the decision-making process and its own responsibilities. Scientific literacy matters, but greater public understanding cannot compensate for institutional behavior that fails to merit confidence.

Can the Science Be Right While the Institution Loses Confidence?

Levin moved directly from ethics to regulatory leadership, asking Hamburg whether an institution could make a scientifically sound decision and still lose public confidence. Her answer was yes, including for COVID-19 vaccines, where extensive scientific evaluation and public controversy coexisted.

Hamburg recalled a criticism she encountered at the FDA: “One of the accusations I heard from day one was you’re a black box.” The agency could reach evidence-based decisions while the people affected by them remained uncertain about how those decisions were made. She emphasized explaining not only what an institution does, but how and why it does it, while listening to the stakeholders whose lives and work it affects.

Transparency, in that sense, is more than releasing information. It requires clarity in reasoning, consistency in decisions, and a willingness to answer questions, even when an institution cannot satisfy everyone. Hamburg also emphasized the independence of scientific decision-making from inappropriate political, financial and ideological pressure, an issue that would return later in the discussion.

The challenge for the wider health ecosystem is straightforward. A scientific decision and its explanation are different responsibilities, and both matter. Institutions cannot assume that sound evidence will be self-explanatory to people encountering its consequences in their daily lives.

What Does Confidence Mean to Someone With Pancreatic Cancer?

Levin then shifted from the institution to the patient, asking Fleshman what makes a physician, clinical trial or investigational medicine worthy of confidence for someone facing pancreatic cancer. The question changed the stakes: For a newly diagnosed person, the need for credible information is immediate, personal and often urgent.

Fleshman described the expectation patients bring to care: “There’s going to be a path for me to follow and someone’s going to walk me through that path.” Yet patients may encounter delayed appointments, delayed testing and incomplete explanations of treatment choices. They may learn too late about clinical trials or about genetic and biomarker testing that could have informed their options.

PanCAN helps translate complex information into questions that patients can bring into their limited time with clinicians. That work does not replace medical judgment. It allows people to participate in decisions rather than becoming passive recipients of information they cannot readily interpret or use.

There is an important distinction between the scientific promise of a treatment and the patient’s ability to benefit from it. People do not encounter scientific innovation as a regulatory dossier or a conference presentation. They encounter it through physicians, appointments, decisions, waiting periods and access to care. Those experiences shape the credibility of the health ecosystem as surely as the published evidence does.

Communication Cannot Substitute for Conduct

Levin connected the preceding responses with a pointed question about communication: Was it too convenient to say that institutions simply needed to communicate better, or did they first need to change their behavior? That question deserves to sit at the center of any discussion about reputation in health.

My response began with a distinction: “Trust is not a campaign.” It cannot be manufactured by messaging or treated as an external asset that communicators can produce on demand. Reputation develops through the consistency of leadership, the culture that follows and the everyday experiences of people affected by institutional decisions.

Three obligations help define that responsibility: timely communication, transparency and truth. They become meaningful when reflected in decisions, especially when developments disappoint patients, investors or the public. Too often, an institutional conversation about difficult news begins with how to position the message rather than what people deserve to know and what the organization must do.

We also tend to speak about institutions as though they possess human character independently of the people who lead them. They do not. People establish policies, choose what to disclose, decide whether to acknowledge mistakes and determine whether organizational values survive difficult moments. Institutional credibility is the consequence of those human choices.

The same discipline is needed when discussing technology. Artificial intelligence can analyze data, identify patterns and augment clinical judgment, but it does not possess the human purposes we sometimes assign to it in our language. People build, train, deploy and govern those systems. The responsibility for ensuring that technology serves patients remains with them, not with the technology itself.

That distinction does not diminish innovation. It restores innovation to its purpose. Tools and institutions exist to serve humanity, and their effectiveness must ultimately be measured through what they enable people to understand, decide and experience.

Can a Leader Admit Not Knowing?

The pressure to project certainty is not limited to institutions. It is familiar in the examination room, where patients and families seek answers and professionals may feel compelled to provide them. During the panel, a brief example from my now-adult daughter’s experience with a rare disease illustrated the value of a physician willing to say that the underlying cause remained unknown.

Physician Nieca Goldberg, MD, at NYU Langone acknowledged uncertainty after years of inconclusive assessments. “I don’t know what this is, but together we will find out.”

The importance of that encounter was not the identity of the family involved, but the quality of the clinical response: A responsible expert did not substitute confidence for knowledge. The acknowledgment left room for further inquiry instead of closing it prematurely.

Ravitsky picked up that observation immediately, reflecting on her work communicating public health guidance during the pandemic. “We conveyed certainty when we didn’t have it,” she said, explaining how officials believed confident messaging would encourage people to follow measures intended to protect lives. The intentions may have been defensible, but the longer-term consequences of overstating certainty deserve examination.

When recommendations changed as new evidence emerged, members of the public were not always prepared to understand why. What scientists recognized as the normal development of knowledge could appear inconsistent to people who had been told that earlier judgments were settled. Ravitsky argued for respecting the public’s capacity to understand complexity rather than presenting scientific uncertainty as a weakness.

Levin carried the exchange to Hamburg with another connected question: What should leaders do when new evidence forces a change in recommendations? Hamburg emphasized the need to explain what is known, what remains unknown and what people can do now, while describing the work underway to answer unresolved questions. Leaders must be prepared to acknowledge mistakes and adjust course without disguising the reasons for doing so.

The exchange exposed a persistent problem in institutional life. People understandably seek direction, especially in a crisis, while leaders fear that candor will be mistaken for weakness. Yet an appearance of certainty can create a larger credibility problem when reality becomes more complicated than the original message allowed.

Does the Medium Create Misinformation, or Do People?

Levin next asked whether the volume and speed of modern communication, from cable news to social media, were themselves eroding public confidence. Hamburg had described how the demands on public health leaders intensified with round-the-clock news coverage and expanded further in the digital environment.

The response to Levin’s question distinguished the channel from the deeper problem. Digital platforms accelerate the movement of claims, but human choices determine what is published, amplified, believed and acted upon. The challenge is not simply that more people can speak. It is that visibility and influence are too often mistaken for expertise and evidence.

A person can now obtain an immediate answer from a digital tool, often without understanding the quality or limitations of the underlying information. That capability can be useful, but it should not be confused with clinical judgment or scientific authority. Technology changes the speed and reach of communication; it does not eliminate the need for discernment.

The issue is equally apparent in the physician-patient relationship. An experience raised during the panel involved a physician dismissing a patient’s information by asking, “Who are you going to believe, me or a patient?” The words were consequential because they treated professional authority and the patient’s perspective as competing claims rather than potentially complementary sources of understanding.

Another physician later performed a complex procedure that the first had rejected, ensuring my daughter would be able to eat without a feeding tube in the future. The lesson is not that clinical expertise should be disregarded. It is that expertise is strongest when it remains open to questions, evidence and the lived experience of the person receiving care. Communication is care when it makes that exchange possible.

When the Science Works but the System Struggles to Catch Up

Levin returned to Fleshman with a question about how patients facing pancreatic cancer should navigate uncertainty while making urgent treatment decisions. Her response brought together the panel’s themes of science, access, communication and human determination.

She described encouraging research presented at the American Society of Clinical Oncology meeting involving a KRAS-targeted therapy. The findings drew attention among researchers and spread quickly through news and social media, where patients and families followed them with intense interest.

Fleshman recounted the experience of Russ, a seriously ill pancreatic cancer patient, and his wife, Marne. After hearing about the investigational treatment, Marne worked to secure access through the medical institution, PanCAN, media outreach and the FDA. Although an expanded access pathway had been authorized, the practical process was difficult and took more than four weeks.

According to Fleshman, Russ improved substantially after receiving the medicine and was later able to travel and participate in advocacy activities. Yet the encouraging outcome also exposed the vulnerability of a system in which a patient’s opportunity may depend on a family member’s persistence and ability to navigate multiple organizations.

“The science worked beautifully but the system almost didn’t,” Fleshman said. Hamburg immediately urged that the barriers behind such delays be examined and corrected. Levin raised the disturbing question of how many patients might have died during a similar waiting period, moving the discussion from a hopeful individual outcome to a responsibility shared across the health ecosystem.

The friction tax paid by patients is measured in delays, anxiety, expense and opportunities that may disappear as disease progresses. Investment in discovery remains essential, but breakthroughs cannot fulfill their promise when the systems responsible for delivering them operate as disconnected parts.

Fleshman also protected the distinction between hope and evidence. Responding to an audience member, she acknowledged that the treatment was not a cure and that the clinical findings did not justify such a promise. Patients deserve hopeful possibilities and scientifically honest explanations in the same conversation.

When Science is Dragged Into Politics

With time running short, Levin moved to a question about the relationship between political direction and scientific judgment. Hamburg acknowledged that scientific agencies operate within government and that policy decisions may weigh competing public priorities, but she defended a stronger boundary against political interference in regulatory science.

Ravitsky added that robust evidence does not erase differences in human values. During the pandemic, communities weighed disease prevention against other pressing needs, including financial security, access to school and family safety. She also described a treatment conversation involving her mother in which a clinical recommendation had to be considered alongside the patient’s priorities for mobility, independence and quality of life.

These examples clarified a distinction running through the panel. Evidence can identify likely outcomes, but people must participate in determining which outcomes matter to their lives. The purpose of scientific knowledge is not to replace human judgment. It is to inform it.

Fleshman reminded the audience that biomedical research funding affects the options available to patients today and in the future. The concluding exchange returned to two related responsibilities: preparing health professionals to engage with people seeking healing and protecting scientific inquiry from political interference.

“Science is not a political party,” was my response. “It’s science dragged into politics.” Scientific institutions are accountable to society, but that accountability cannot mean allowing ideology to dictate evidence or political leaders to interfere with scientific work. Levin asked the audience to applaud those remarks, a moment that reflected the discussion’s return to the responsibilities of human leadership.

Humanity Remains the Measure

The planned meeting of the Forum’s life sciences and patient-centered perspectives was more than a matter of programming. It recognized that discovery and experience belong in the same conversation. Progress is incomplete if a scientific advance can be described in detail while the people who might benefit remain unable to understand or access it.

Levin’s questioning helped reveal that the challenge cannot be reduced to a lack of public education or the need for a more persuasive message. Ravitsky challenged experts to examine institutional behavior; Hamburg described the duties of scientific leadership; Fleshman made visible the costs of fragmentation. Their perspectives converged on a principle with consequences for every organization developing, regulating, communicating or delivering health innovation.

We often assign responsibilities to abstractions. We expect institutions to be ethical, technology to be responsible and systems to become patient-centered. Yet people make the choices that give those words meaning. Artificial intelligence does not independently decide whether time saved through automation becomes more appointments or more meaningful conversation. Health leaders make that choice, and patients experience the result.

The same is true of scientific communication. More information is not necessarily more understanding, and greater reach does not guarantee greater credibility. The objective is to help people distinguish what is established from what remains uncertain and to give them an informed voice in decisions that affect their lives.

The Galien Foundation celebrates the achievements of science, and the panel demonstrated why those achievements deserve a broader measure of success. Scientific progress expands what humanity can do. The people who create institutions, guide research, care for patients and govern technology determine whether that progress becomes meaningful in human lives.

The health ecosystem should defend scientific rigor while examining the barriers between discovery and care. It should embrace technology while preserving human responsibility and make room for uncertainty without abandoning direction. Science and innovation are designed to serve people, not the other way around. That is why people matter, and why humanity must prevail.

The post When Science Advances, Why Does Society Doubt Its Own Progress? appeared first on Medika Life.