{"id":14117,"date":"2026-06-25T05:27:00","date_gmt":"2026-06-25T05:27:00","guid":{"rendered":"https:\/\/medical-article.com\/?p=14117"},"modified":"2026-06-25T05:27:00","modified_gmt":"2026-06-25T05:27:00","slug":"how-the-patient-rights-revolution-builds-on-americas-1776-one","status":"publish","type":"post","link":"https:\/\/medical-article.com\/?p=14117","title":{"rendered":"How The Patient Rights Revolution Builds on America\u2019s 1776 One"},"content":{"rendered":"
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By MICHAEL MILLENSON<\/p>\n

It took 129 years for the inalienable rights proclaimed in America\u2019s Declaration of Independence to apply to the rights of patients in relationship to their doctors.<\/p>\n

In 1905, an Illinois appellate court ruled in favor of a woman who\u2019d sued her surgeon for performing a hysterectomy without disclosing in advance what procedure he was doing. The court declared<\/a> in what became one of the foundational principles of informed consent that \u201cunder a free government,\u201d all citizens had the right to know what a doctor planned to do to their body before he did it, no matter how \u201cskillful or eminent\u201d the physician.<\/p>\n

Today, in the era of artificial intelligence chatbots and data democratization, the lessons of America\u2019s 1776 political revolution continue to be reflected in the push for patient rights.<\/p>\n

The most important lesson pertains to power. The American colonists learned from hard experience that those holding power rarely concede it voluntarily. Similarly, every advance in information sharing with patients can be linked to sustained economic or legal pressure.<\/p>\n

Just as the British genuinely believed they practiced \u201cbenign colonialism<\/a>,\u201d the surgeon who performed a hysterectomy on 40-year Parmelia Davis to treat her epilepsy not only believed deceiving her was necessary for her health, but might also have cited as support the American Medical Association\u2019s Code of Medical Ethics. Patients, the code then declared, should not allow their own \u201dcrude opinions\u201d to obstruct \u201cprompt\u201d obedience to the doctor.<\/p>\n

Although that admonition was subsequently axed, patient rights remained minimal for decades. <\/p>\n

<\/span><\/p>\n

It took a 1957 court ruling, in a suit by a 55-year-old man whose legs were left paralyzed following a hospital diagnostic procedure, to ensure that \u201cinformed consent\u201d included disclosing a surgery\u2019s risks as well as benefits. A requirement that the disclosure be in \u201cplain language\u201d took until 1972, in a court ruling related to a 19-year-old man left paralyzed after a laminectomy for back pain. The court specifically cited the right \u201cof every human\u201d to determine \u201cwhat shall be done with his own body.\u201d<\/p>\n

In The Silent World of Doctor and Patient<\/em><\/a>, the medical ethicist Dr. Jay Katz wrote, \u201cPhysicians have always maintained that patients are only in need of caring custody.\u201d As Katz went on to criticize that view, he might have added that it conflicts with how Americans have seen themselves since the country\u2019s beginnings.<\/p>\n

In The Radicalism of the American Revolution<\/em><\/a>, historian Gordon Wood wrote of the college president who in 1789, the year the U.S. Constitution became effective, huffed that American self-reliance was being taken to such an extreme that he soon expected to see books such as \u201cEvery Man His Own Lawyer\u201d and \u201cEvery Man His Own Physician.\u201d<\/p>\n

Or \u201cwoman.\u201d Like the self-reliant women who, after World War II, rejected pediatricians telling them when to feed their infants and, supported by the writings of the dissident Dr. Benjamin Spock, decided they were capable themselves of knowing when their babies were hungry. Or like the self-reliant Boston feminists of the late 1960s and early 1970s<\/a>, chafing at a medical system that discouraged questions, who wrote a book of frank health information, Our Bodies, Ourselves<\/em>, that eventually sold millions of copies. Or like the self-reliant women in the 1980s who demanded to be fully conscious during childbirth and, with their partner, make a shared decision with the doctor as to whether to continue natural breathing exercises or accept medical intervention.<\/p>\n

There is a deeper similarity between the patient rights fight and broader American political struggles. Although the American revolution\u2019s ideals were codified in the first ten amendments to the Constitution \u2013 known as the Bill of Rights \u2013 the rights guaranteed to all in theory were often absent in practice. In that same vein, the patient rights ideals of informed consent, patient-centered care and shared decision-making that have been codified in countless rules, regulations and ethics codes too often in actual practice remain euphemisms for getting the patient to do what the doctor wants.<\/p>\n

One recent article described how distraught patients facing a medical procedure are often given scant time to consider a dense, informed consent form whose content may be intended more to protect the institution than the patient<\/a>. That process, stripped to its essentials, isn\u2019t really that different from the \u201cprompt obedience\u201d sought by 19th century physicians.<\/p>\n

The advent of the AI chatbot, with its personalized responses to even the most detailed medical questions, is rapidly changing the balance-of-power equation despite the technology\u2019s known flaws. One in three adults used generative AI for health information and advice in the last year, according to both a KFF Tracking Poll<\/a> and Rock Health\u2019s Health AI Consumer Adoption Survey<\/a>. More significantly, according to KFF four out of ten individuals using AI uploaded personal medical information such as test results or doctors\u2019 notes. More significantly still, the latest Edelman Trust Barometer<\/a> reported that 64 percent of respondents \u2013 including a majority of those over age 55 \u2013 said they believed consumers fluent with AI could do at least one task as well as, or better than, doctors.<\/p>\n

Even greater change is on the way; e.g., patient-controlled AI agents, anyone? Just as the elite among the colonists came together to overturn the status quo, so, too are sophisticated patient activists interacting in\u00a0the\u00a0#PatientsUseAI Substack<\/a>, launched by \u201cparticipatory medicine\u201d pioneer \u201cePatient Dave\u201d deBronkart. For instance, efforts to institutionalize \u201cpatient-directed\u201d health care include the Critical AI Health Literacy (CAIHL<\/a>) initiative, from Hugo Campos and Liz Salmi, designed to help patients ask, \u201cWho does this AI actually serve, and does it expand or constrain patient agency?\u201d and the\u00a0CLAIM<\/a>\u00a0initiative from Gilles Frydman (Contextual Literacy for AI in Medicine), which provides a structure for interrogating the AI\u2019s answers and deciding what output applies to your actual situation. There is also the\u00a0Patient AI Rights Initiative<\/a>\u00a0of The Light Collective.<\/p>\n

A recent JAMA<\/em> essay<\/a> by medical ethicist Dr. John Lantos lamented \u201cThe Lost Aura of the Physician in the Age of Artificial Intelligence.\u201d Wrote Lantos:<\/p>\n

AI democratizes medical knowledge in a way no prior technology did. It is available to everyone, on their phones, without the expensive superstructure of a hospital\u2026When a profession\u2019s core competencies become reproducible, the central question is not whether it will disappear, but how its social role will be redefined.<\/p>\n

The answer to that question lies in plain sight, if only physicians would refrain from hand-wringing and look, instead, to role models. My own list would include:<\/p>\n

Dr. Spock, who illustrated \u201cpatient empowerment\u201d at its most elemental by telling a 1947 meeting of the AMA that \u201cthe baby will be a better judge than the mother or pediatrician of how much he needs at each feeding.\u201d<\/p>\n

Dr. Sidney Wolfe, publishing the first consumer directory with physician information in 1974 as head of Ralph Nader\u2019s Public Citizen Health Research Group and advocating for patients for decades afterwards.<\/p>\n

Drs. John Wennberg and Albert Mulley, pioneering the idea of shared decision-making in the 1980s with interactive tools intended to enable it.<\/p>\n

Dr. Tom Delbanco, coining the term \u201cpatient-centered care\u201d in the 1990s and then providing years of guidance on how to accomplish it, including co-founding the OpenNotes movement.<\/p>\n

Dr. Donald Berwick, prompting the Institute of Medicine to declare patient-centered care a pillar of American medicine, helping popularize the phrase \u201cNothing about me, without me,\u201d and so much else.<\/p>\n

Dr. Paul Batalden, forcefully advocating \u201cco-production\u201d of care.<\/p>\n

Dr. Tom Ferguson, a visionary far outside the medical establishment, grasping the potential of the digital information revolution in the early 1990s and inspiring the formation of the Society for Participatory Medicine.<\/p>\n

While there are certainly other American physicians who might be on this list, I\u2019d like to add a personal, non-American favorite. When I wrote a commentary a decade ago urging physicians to understand that digitized data meant their control of information was slipping away, it was summarily rejected by U.S. medical journals. The BMJ<\/em> not only welcomed my essay, \u201cWhen patient-centered isn\u2019t enough<\/a>,\u201d which set out a \u201ccollaborative health\u201d structure \u2013 one based on shared information, shared engagement and shared accountability \u2013 to replace the old hierarchy, but editor-in-chief Dr. Fiona Godlee designated it an \u201cEditor\u2019s Choice.\u201d<\/p>\n

On the eve of America\u2019s birthday, it is ironic that the then-editor of the British Medical Society\u2019s official journal appreciated patient autonomy better than many U.S. counterparts do even now. Unlike in 1776, the most avid activists don\u2019t seek full independence \u2013 \u201cEvery Man His Own Physician.\u201d They do insist, however, on a relationship that\u2019s anchored in mutual respect and trust, not mere lip service. For their own sake, as well as the sake of their patients, doctors should listens.<\/p>\n

As I concluded in my BMJ<\/em> essay:<\/p>\n

Accepting a less central role may feel at first as if collaborative health is shrinking the profession\u2019s importance. In reality, accepting true partnership will profoundly expand the profession\u2019s influence in the days to come.<\/em><\/p>\n\n

Michael L. Millenson is president of Health Quality Advisors & a regular THCB Contributor.<\/em><\/p>","protected":false},"excerpt":{"rendered":"

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