Doctors are evaluated on patient throughput, not the depth of their engagement. Pharmaceutical and medical device companies create and perfect new products for patients but often neglect their preferences, stated needs, and lived experiences in recruitment and development efforts.

Real-world evidence (RWE), a promising frontier in health settings from innovation to care decisions, is poised to change this dynamic. If we are open to acting upon it, it can become the basis for centering efforts directly on the patient experience.

As a father and caregiver, I’ve walked this journey firsthand. My child’s health challenges have brought me face-to-face with the limitations of a system that often measures success in drugs prescribed rather than resolutions achieved. I’ve seen the toll that rushed consultations and fragmented care take on families searching for answers. It is a stark reminder that even as the science of medicine advances, the art of listening lags.

Recently, we visited a doctor’s office to consult about our young adult’s rare disease. We hired a patient advocate to bridge the chasm between clinical expertise and lived experience. They translate medical jargon, connect patients with appropriate specialists, and, most importantly, validate the patient’s voice.

Listening to the advocate prompted me to ask a critical question about this complex clinical case: “What is the underlying cause of the symptoms?”When our non-medically trained patient advocate suggested surgery to address the root causes of our child’s GI problems, one doctor we consulted, who came from a noted teaching hospital, confronted us.

“Who are you going to believe,” he asked. A patient or me?”  Ultimately, the patient advocate, who consulted with other patients and their physicians, was spot-on. The operation took place; the outcome was outstanding. That is the power of RWE as a catalyst for objective conversation.

Real-World Evidence: A Catalyst for Change

The Food and Drug Administration (FDA) defines RWE as “the clinical evidence about the usage and potential benefits or risks of a medical product derived from analysis of real-world data (RWD).” These data include electronic health records, insurance claims, and patient-generated information from mobile health apps and wearable devices. Unlike randomized controlled trials, which too often exclude diverse populations, RWE provides a more comprehensive view of how treatments perform in real-world settings.

Physicians face immense pressure to see more patients in less time. Emergency physicians, for example, are expected to see 2.4 to 3.3 patients per hour, while family doctors might handle 3.3 patients or more per hour in high-volume settings. These metrics may boost productivity, yet at the same time, often come at the expense of meaningful patient interactions. The result? Missed opportunities to understand the full scope of a patient’s experience and even the true nature of the problem.

Empowering Patients and Data

One possible example of how RWE can prioritize the patient’s voice is StuffThatWorks, a platform founded by Yael Elish, one of the founders and executives of the consumer navigational company WAZE. Like WAZE, StuffThatWorks uses AI-powered crowdsourcing to connect individuals with similar diagnoses, enabling them to share experiences and generate actionable insights into treatments and outcomes. It’s a patient-led approach that democratizes data collection, making it richer and more representative. For sponsors of medical trials, the platform offers the chance to harness a massive customer focus group, gaining access to the voices of millions of people struggling with health concerns ranging from treatment to anxiety around illness to the cost burden of sickness.

StuffThatWorks – collaborating with companies and patient organizations, recently began collaborating with The Marfan Foundation, highlighting the potential to engage non-profits in leveraging RWE to benefit global disease communities. Similarly,  The StuffThatWorks partnership with Advanced Clinical, a major research services and clinical resourcing organization, allows project teams to engage with patients directly through surveys and focus groups, enhancing patient participation in clinical research. These initiatives demonstrate the transformative power of intentionally centering patient experiences in healthcare innovation.

More and more, leading academic hospitals such as Weil Cornell Medical Center’s Genetics and Personalized Cancer Prevention Department in New York City are recognizing that care extends beyond cutting-edge medicine and outstanding physicians—it calls for experts who have been on frontlines—as patients and counselors.

“I feel fortunate to bring my real-world experience as a patient to my work as a provider,” says Emily Epstein, LMSW, Genetic Social Worker/Clinical Behavioral Health Care Specialist at Weill Cornell. “This deep understanding of the patient journey inspired me to create a role where I can offer the very support I once advocated for, rooted in true empathy and knowledge. Real-world patient experience is essential to transforming healthcare, infusing it with humanity, compassion, and meaningful change—ensuring we honor and serve both the science of medicine and humanity at its heart.”

Chief Patient Officers

Several pharmaceutical and clinical research companies have established Chief Patient Officer (CPO) roles, recognizing the importance of patient engagement. Parexel, for example, appointed Stacy Hurt as a CPO to lead patient advocacy efforts. Hurt says, “Parexel’s priority focus is on providing patient-centered solutions that enhance the clinical trial experience and make participation more accessible to everyone.”  A health professional who is both a cancer survivor and a caregiver for her son, Hurt brings a patient’s perspective to the work.  Companies like Merck, Pfizer, Sanofi, and Astellas have also created similar roles, signaling a broader industry commitment toward integrating patient insights into drug development.

The National Health Council emphasizes that as RWE becomes a cornerstone of health decision-making, the experience and needs of patients must be prioritized, not addressed as an afterthought. Integrating RWE into the health system can enhance treatment efficacy, safety, and patient satisfaction. However, this requires more than technological innovation; it demands a cultural shift within the healthcare ecosystem.

Now What?

Reflecting on my child’s medical journey and the rise of patient advocacy communities that began to take form during the HIV epidemic and that patient community’s vocal demand to be included in conversations about drug development and news flow, it’s clear that the journey toward patient-centered care is still at an awkward early stage.

Platforms like StuffThatWorks offer a glimpse into what’s possible when prioritizing patient voices. By fostering communities where individuals can share their experiences, these tools generate valuable data and empower patients to take an active role in their care.

Let us commit to creating a health system where every patient’s story is heard, valued, and acted upon. By doing so, we honor the science of medicine and humanity at its heart.

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Two Texas residents, who reside in long-term care facilities, contracted Listeriosis. The infections were traced back to contaminated chicken products from Tyson Food Inc, prompting a Food Safety Alert.

Listeria monocytogenes is a bacteria found in soil and water. Cattle and poultry can carry the bacteria, which causes a severe type of food poisoning in humans. Listeria accounts for only 1 percent of reported bacterial food-borne infections, but these cases can be fatal when not treated with appropriate antibiotics.

The CDC reports approximately 1,600 people contract Listeriosis each year in the United States, leading to 260 deaths.

The US Department of Agriculture Food Safety and Inspection Service compared samples from Tyson Food Inc with those of the infected Texas patients. The bacterial strains from the two patients were a match indicating a shared original source.

Public health agencies traced their exposure to chicken products stating “two precooked chicken samples from two establishments that are closely related genetically to Listeria monocytogenes from ill people.”

Listeriosis was found in fully cooked chicken products marketed under brands such as Tyson, Jet’s Pizza, Casey’s General Store, Marco’s Pizza, and Little Caesars.

The CDC and public health agencies can respond quickly to listeriosis outbreaks because of the Whole Genome Sequencing Project. This early detection tool helps identify infectious disease public health threats before they can spread. When someone tests positive for Listeriosis, scientists genetically sequence the entire strain of bacteria. When two patients test positive for the same strain, public health officials can search for the source causing the infections. According to the CDC, the Whole Genome Sequencing Project allows scientists to:

• Detect early clusters of Listeria infections
• Link cases of Listeria to a likely source
• Identify unrecognized sources of Listeria
• Stop Listeria outbreaks while they are still small

Listeriosis is a potentially life-threatening infection when people eat food contaminated by the bacteria Listeria monocytogenes. Most people who contract Listeriosis have a mild illness, but those with suppressed immune systems or over age 65 can become very sick.

Patients with autoimmune diseases, HIV, cancer, or transplants are at increased risk. The infection can spread to the bloodstream causing sepsis or to the brain, causing meningitis or encephalitis.

The symptoms of Listeria can arise days to weeks after exposure. Common symptoms are similar to the flu, including fever, chills, muscle aches, and diarrhea. Some may develop more concerning symptoms such as headaches, a stiff neck, or confusion.

Listeriosis is especially concerning during pregnancy. Pregnant women are at a much higher risk of getting sick from Listeriosis. Pregnant women who contract Listeriosis generally have a mild illness, but the disease has been linked to miscarriage, stillbirth, and preterm labor.

Listeriosis can be transmitted from a pregnant woman to her baby through the placenta. The placenta is the organ inside the uterus that keeps the baby alive. Maternal blood circulates through this internal filtration system. The growing baby receives oxygen and nutrients from the mother, and the placenta removes carbon dioxide and waste products. 

The placenta is also the defense system against invading infections like bacteria and viruses. Placental immune system cells called trophoblasts are the first line of defense against any invading organisms.

Most infectious invaders do not make it across the placental defense system. Trophoblasts stop them in their tracks. Listeriosis can cross the placental barrier leading to infections in the baby.

Listeriosis can cause intellectual disability, paralysis, seizures, and blindness. Infected babies may develop problems in the brain, kidneys, and heart.

The CDC Food Safety Alert linked this listeria outbreak to fully cooked chicken supplied by Tyson Food Inc recalling products “shipped nationwide to retailers and institutions including hospitals, nursing facilities, restaurants, schools and Department of Defense locations.”The products affected include:

• Fully cooked chicken strips
• Diced chicken,
• Chicken wing sections
• Fully cooked pizza with chicken.

The US Food and Drug Administration offers this helpful video to help families learn about preventing foodborne illnesses.

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