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By James Roberts
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A health care system that asks patients to navigate its gaps in knowledge is becoming increasingly difficult to defend. Across the US, health systems are grappling with rising demand, clinician burnout, an impending shortage of approximately 248,000 health care workers, and an expanding population living with chronic, multi-system illnesses that do not fit neatly into conventional specialties.
For many of those patients, the challenge is far more than just finding the right diagnosis. It is surviving a maze of health care red tape, from referrals and disconnected providers to insurance barriers and administrative hurdles. On top of that, a 2026 report by the Edelman Trust Institute found that health care fragmentation has pushed public division to a record high, with the large majority of Americans now viewing the system as deeply split.
Despite the scientific advances made in health care over the past century, many patients with lifelong diseases such as common connective tissue disorders often spend years searching for solutions. They see numerous specialists and receive multiple misdiagnoses before receiving an accurate diagnosis. As health care leaders search for ways to modernize delivery, a growing idea emerges: what if the people best positioned to redesign health care are those who have spent years navigating its failures?
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Audre Wirtanen and L. Tuthall, co-founders of Hyp+Access, argue that the conversation isn’t theoretical. A disability-led non-profit organization focused on care access and justice for people with connective tissue disorders and overlapping complex conditions, Hyp+Access recently received contingent approval from New York’s Public Health and Health Planning Council (PHHPC) for its Article 28 Diagnostic and Treatment Center Certificate of Need (CON) application, and will now proceed to construct and make the center operational in order to receive this coveted designation, formally recognizing it as a regulated health care facility. However, the organization was not designed by clinicians seeking patient input—it was designed by patients themselves.
“It’s patients who really built this clinical model that mainstream medicine was too hesitant to touch,” Wirtanen says. “Perhaps this hesitation stems from the silos that exist in the industry, or because the model fundamentally challenges how the health care business is normally done.”
Wirtanen and Tuthall contend that health care has historically been organized around reimbursement structures and medical specialties instead of the lived reality of patients whose conditions span multiple organ systems. They point to a model of care that has become progressively compartmentalized, making it increasingly difficult for providers to see the whole person sitting in front of them.
According to Wirtanen and Tuthall, the legacy of the 1910 Flexner Report has long been debated by historians and researchers. They point out the larger argument that its influence reinforced highly specialized disciplines while sidelining more integrated approaches to care, and marginalizing forms of knowledge that fell outside institutional medicine. In Tuthall’s view, it led to a reorganization that historians now link to the closure of most of the Black medical schools operating at the time, cementing a workforce shaped by exclusion.
Bias against complex, chronic conditions, Tuthall argues, runs through that same history, and it lands hardest on patients who already carry the most burden within medicine—those without the means to go around the system. “The system isn’t fragmented by accident. People are getting hurt by how much bias there is and by how health care has been organized around separate specialties that often aren’t communicating with each other,” they say.
Wirtanen and Tuthall suggest that patients occupy a perspective no institution can replicate. Every misbelieved symptom, denied insurance claim, delayed appointment, misplaced medical record and breakdown in communication lands with the person seeking care. Over time, they argue, patients often become their own care coordinators simply because nobody else connects the pieces.
“Patients experience the consequences of every single choice on all ends of care. They identify where information isn’t moving from one place to another because they have to figure it out themselves,” Wirtanen explains.
That experience, Tuthall adds, has produced decades of practical patient expertise.
“It is patients who keep people alive in this community,” they say. “They’re recommending clinicians, sharing treatments, recognizing complications and connecting patterns. That knowledge has existed for a long time but it has never been respected in the same way as institutional knowledge.”
Before social media or online health advocates entered public debate, disability communities often relied on internet forums and peer networks to exchange information that traditional health care struggled to provide. Wirtanen argues that those conversations tend to be dismissed because they originate with patients rather than institutions.
“People hear that someone learned something through social media and assume that means it isn’t credible,” she says. “But they’re overlooking why those communities exist. People share resources because they have lived the same experiences.”
Instead of advocating from outside the system, Hyp+Access chose to redesign one from within. The organization spent years reverse-engineering administrative frameworks and medical coding requirements to create an integrated care model that could function inside existing regulatory structures without relying on concierge medicine.
The model refuses to silo complex chronic diagnoses into different departments. It is designed to bring related specialties together while assigning every patient a peer care manager who can help coordinate medical care alongside housing, employment, education, accessibility, transportation and other social factors that influence health outcomes.
Providers also receive administrative support intended to reduce documentation burdens and allow more meaningful patient interactions, addressing pressures that Wirtanen believes increasingly shape clinical decision-making.
Still, neither founder believes that health care’s future will be secured through isolated technologies or single-service innovations if the underlying system itself remains unchanged. What they advise instead is whole-system thinking. “Patients shouldn’t be treated as a supplement to health care. They should be recognized as experts in their own right whose knowledge complements clinical expertise,” they explain.
Wirtanen hopes the conversation ultimately shifts away from treating mere diagnoses and toward truly understanding human beings. Patients deserve care that honors the intricate complexity of their lived experiences, rather than forcing them into rigid, clinical boxes that distort who they are. Ultimately, medicine achieves its highest purpose when the health care system boldly recognizes and heals the whole person.
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