This article is a tribute to Dr Tom Ferguson (1943-2006), one of the “quiet giants” of health care, who worked beyond the traditional spotlight to build something profoundly human. Dr Ferguson built an architecture of trust with patients and clinicians in the information age, and this vision became the architecture on which the Society of Participatory Medicine was founded.

It is a privilege for the Journal of Participatory Medicine to formally share Dr Ferguson’s foundational white paper e-Patients: How They Can Help Us Heal Healthcare (accessible via Multimedia Appendix 1) as both a historical record and a blueprint for our future. This future demands an infrastructure where difficult stories and lived histories are integrated from the start. We must actively resist what health economist Professor Jack Dowie coined “preference erasure” [2,3], which is the systemic process whereby individual patient preferences are stripped away when entered into the scientific record, leaving patients with no more “real estate” in the final evidence base than a forgotten grave.

Twenty-five years ago, Dr Ferguson articulated a radical and enduring vision: that patients could be the master architects of their self-care. Tom did not see a hierarchy of credentials; he saw a community of problem-solvers. He coined a term that reshaped our language: the “e-patient” [4]. He said “e-patient” was to “patient” as “email” was to “mail.” He later added more descriptive “e-words”: “equipped, engaged, empowered, and emancipated.”

He spoke from experience. Diagnosed around 1991 with multiple myeloma, he faced a median survival of 2 to 4 years but lived 15, dying in 2006. The visionary friends he’d accumulated, who practiced what he preached, formed the Society for Participatory Medicine.

Dr Ferguson described “medical self-care” while still in medical school in the 1970s, and when the World Wide Web emerged, he envisioned the profound transformation it would be for patients. In January 1995, within a year of the release of the first popular web browser (Mozilla), he published a pair of “triangle slides” showing the inversion of power as medicine shifted from the Industrial Age to the Information Age (Figure 1).

The Industrial Age model placed physicians at the apex, with authority, knowledge, and power flowing downward to passive patients, whose self-care was not even recognized as existing. The revolution Dr Ferguson foresaw was simple: as information access became democratized, it would flip the triangle, giving power to self-care and self-help networks. In chronic disease, rare disease, and the management of one’s own life, the patient has first-hand expertise. The clinician becomes the consultant. It is noteworthy to view the accuracy of Dr Ferguson’s perceptions of ways the new paradigm could influence costs and social approvals.

“If there’s a ‘George Washington’ of the empowered patient movement, it’s Doctor Tom Ferguson,” wrote Elizabeth Cohen, the senior medical correspondent for CNN in 2008. She noted, “In 1975, at a time when many doctors were still viewed as all-knowing and infallible, Ferguson started writing about patients advocating for their own health care” [7]. A timeline of Dr Ferguson’s advocacy and teaching is shown in Table 1.

The CNN article and the Journal of Participatory Medicine draw several parallels between Dr Ferguson and the Founding Fathers of the United States:

We hear of “patient engagement” described as an adjunct to care. Yet the true history of participatory medicine was written by those who did not wait for permission [17]. These are the advocates who conducted interviews from beds in the intensive care unit [18], endured rejection by systems they sought to improve [19], and banded together to provide palliative care when the world looked away [20].

Dr Ferguson’s vision was partnership, not a power hierarchy. It was a recognition that patients are the primary providers of health care whose contributions have historically been limited by their access to knowledge. He worked to erase those limits, as the Society of Participatory Medicine does today. Across conditions, geographies, and decades, e-patients have demonstrated three enduring truths:

The white paper e-Patients: How They Can Help Us Heal Healthcare (Multimedia Appendix 1) is more than an archive; it serves as a standard of humanity. We define this standard not merely as a historical record, but as a commitment to humane medical care, a virtue derived from the human condition that actively supports love and compassion. We honor those who managed the estates of destitute colleagues and restored dignity to those the world had cut out. They proved that durable innovation emerges only where relationships are valued and the human element is treated as essential infrastructure.

Today we know that the e-patient is not a niche role or a transitional phase. It is a force of nature shaping destiny. But this was not at all apparent when Dr Ferguson began his work. Over decades, this movement has grown from a fragile seed to a vulnerable shoot, and finally to a strong, fruit-bearing tree. Its viability is no longer threatened by those who once sought to uproot it. It has become a shelter, broad enough to hold even its former skeptics, sustained by the very collaboration it made possible.

E-patients continue to build the infrastructure, share their stories, and bear the burden of crisis together as they pioneer innovation. We are witnessing transformative knowledge for self-care fueled by large language models democratizing and organizing information that was formerly unavailable to patients when it lived within inaccessible institutional paywalls [25,26].

At the Journal of Participatory Medicine, we are not waiting for institutions to change. Like the e-patients with type 1 diabetes who declared the #WeAreNotWaiting hashtag and created their own treatment [28], we are building the future alongside them, beginning with the recognition of those who have already led the way.

These contributions remind us that lasting progress arises not from abstraction, but from everyday people who dare to rise, work together, and insist that trust itself be treated as essential infrastructure.

This article is intended as a historical document. e-Patients: How They Can Help Us Heal Healthcare deserves a permanent home in the scientific archives rather than remaining as an obscure PDF on a society’s back pages. By providing clear history and attribution, we ensure that resources like the James Lind Library can accurately catalog the origins of this movement, giving Dr Ferguson the honor his work deserves.

We recommend readers download and read the 2007 white paper e-Patients: How They Can Help Us Heal Healthcare via Multimedia Appendix 1.