Participatory Medicine and E-Patients

Gilles Frydman

President, Association of Online Cancer Resources

Bruce D. Shriver

Editor-in-Chief, ESUN

[Editor's Note: In the next issue of ESUN, we will be launching a new column by Gilles Frydman, "Participatory Medicine and E-Patients". This brief article serves as introduction to both topics and why they are intimately related.]

We believe that the report, "e-Patients: How they can help us heal healthcare", is very important. Anyone interested in understanding what is behind some of the important changes in and some of the emerging possibilities for the healthcare landscape in the United States (and quite possibly in many countries around the globe) should read it if they haven't already done so. The report was begun by the pioneering physician, author, and researcher Tom Ferguson, M.D. and was recently completed by a group of his colleagues after his untimely death in 2006. The group is called "The e-Patient Scholars Editorial Team" and consists of Meredith Dreiss, Susannah Fox, Gilles Frydman, Joe and Terry Graedon, Alan and Cheryl Greene, John Grohol, Dan Hoch, and Charlie and Connie Smith. An increasing number of patients, caregivers, and survivors are empowering themselves. The report discusses some of the potential benefits of participatory medicine and identifies hurdles that are in the way of achieving those benefits.

E-Patient The e-Patient Scholars Editorial Team endorses the definition of e-Patient given in Wikipedia. It is repeated here for the convenience of the reader: "e-Patients (also known as Internet Patient, or Internet-savvy Patient) represent the new breed of informed health consumers, using the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. e-Patients report two effects of their online health research—"better health information and services, and different (but not always better) relationships with their doctors." Based on the current state of knowledge on the impact of e-Patients on the healthcare system and the quality of care received: since the advent of the Internet many clinicians have underestimated the benefits and overestimated the risks of online health resources for patients medical online support groups have become an important healthcare resource the net friendliness of clinicians and provider organizations—as rated by the e-patients they serve—is becoming an important new aspect of healthcare quality. this is one the most important cultural medical revolution of the past century, mediated and driven by technology. the impact of the e-Patient cannot be fully understood and appreciated in the context of pre-internet medical constructs. Research must combine expertise from specialties that are not used to work together." Participatory Medicine A related definition for "Participatory Medicine" can be found on the Seven Words of Wisdom blog: "The presence of e-Patients has already caused a shift in the traditional, paternalistic doctor-patient relationship toward one that may best be described as “participatory”. In that spirit, we propose a new model of medical care to be called Participatory Medicine. Participatory Medicine is based on the development of a team that includes the patient, patient groups, the entire care team, and clinical researchers in a collaborative relationship of mutual respect. It requires equal access to all the data and equal rights in the decision making process, based on all the data collected, the information gathered and collective wisdom. It is based on the understanding that treating an individual patient with optimal care is often beyond any single individual ability.   All sides must take their role seriously and accept the responsibilities of that role. Patients must significantly raise their functional level of health literacy and demand respectful treatment from providers. They should be able to comprehend enough of the medical picture to properly describe their daily experiences as recipients of medical care."

The "e-Patients: How they can help us heal healthcare" report is available online both in PDF and wiki format on the e-Patients website. It is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 License. The e-Patient Scholars Editorial Team has given me permission to republish Dr. Ferguson's preface to the report consistent with the Creative Commons license. I selected the Preface because I thought it would whet the reader's appetite to examine the complete report.

Preface

In his groundbreaking work, Thomas Kuhn identified two contrasting types of scientific work. ^[1] The first, normal science, involves the gradual accumulation of knowledge within a dominant professional paradigm that is still timely and effective. ^[2] The discovery of the structure of DNA is one example of normal science: the investigators knew what they were looking for, knew the methods they would need to use, had faith and trust in their underlying paradigm, and immediately knew it when they found the answer. ^[3] A healthy and vital professional paradigm can be a sort of unifying cultural DNA, helping members of a profession work together.

But there can be a dark side to professional paradigms as well. Since observations, approaches, and strategies that don't conform to the accepted tenets of the dominant paradigm are typically ignored, denied or explained away, an outdated paradigm can insulate a professional community from new developments that are "off the radar screen" of their customary ways of thinking. And the understandable professional impulse to defend and protect a valued paradigm can lead professionals to champion obsolete practices, to stifle needed change, and to make attempts at innovation-within the paradigm-unproductive.

Outdated professional paradigms thus sometimes persist far longer than they should. And so in times of rapid technological or cultural change, when it becomes increasingly clear that the dominant professional paradigm in its traditional form no longer serves the needs of the greater community, a second type of scientific work becomes necessary.

Disruptive science seeks to identify and understand the underlying limitations of the old paradigm, and to facilitate the development of a more suitable and sustainable new scientific worldview. And while the practitioners of normal science may keep their methods private and conceal their results until such time as it best serves their purpose, practitioners of disruptive science are typically more open and collaborative in their efforts, reaching out to a network of like-minded investigators, seeking their advice and inviting their collaboration. The shift from the Ptolemaic to the Copernican model of the solar system, as described by Kuhn, ^[4] provides a valuable illustration of disruptive science.

Many of the insights in the chapters that follow came directly from the thousands of e-patients with whom my colleagues and I have had the honor of communicating over the past decade and more. This includes thousands of free-text responses to e-patient surveys conducted through the Pew Internet & American Life Project. Additional e-patient insights were passed on via my extraordinary group of advisors, the e-Patients Scholars Working Group. These invaluable colleagues have collaborated and brainstormed and debated and reviewed many earlier drafts. Together and separately, we have visited e-patient weblogs and home pages, participated in e-patient support groups, subscribed to e-patient mailing lists, and lurked in e-patient chat rooms and Web forums. So in addition to summarizing the opinions of some of the most knowledgeable professionals and researchers, I have tried, whenever possible, to let the reader hear the contemporary e-patient's voice.

As my colleagues and I journeyed through this rapidly evolving and largely uncharted domain, we tried to imagine a future healthcare system in which the many positive trends and developments we have encountered could be accepted, acknowledged, supported, and integrated with our current patterns of medical practice. I am immensely grateful to all who helped with this project, and I have relied heavily on their wisdom and guidance in preparing the pages that follow. The members of the e-Patient Scholars Working Group are listed separately.

My role in this project has been much like that of a host at a dinner party, inviting a remarkable cast of characters to share their insights and describe their visions. I have listened carefully and have asked innumerable questions. I've done my best to synthesize what I heard, and what I myself discovered, into an intelligible conclusion:

e-Patients are driving a healthcare revolution of major proportions.

 

The old Industrial Age paradigm, in which health professionals were viewed as the exclusive source of medical knowledge and wisdom, is gradually giving way to a new Information Age worldview in which patients, family caregivers, and the systems and networks they create are increasingly seen as important healthcare resources. But the emerging world of the e-patient cannot be fully understood and appreciated in the context of pre-Internet medical constructs.

 

The medical worldview of the 20th century did not recognize the legitimacy of lay medical competence and autonomy. Thus its metrics, research methods, and cultural vocabulary are poorly suited to studying this emerging field. Something akin to a system upgrade in our thinking is needed-a new cultural operating system for healthcare in which e-patients can be recognized as a valuable new type of renewable resource, managing much of their own care, providing care for others, helping professionals improve the quality of their services, and participating in entirely new kinds of clinician-patient collaborations, patient-initiated research, and self-managed care.

 

Developing, refining, and implementing this new open-source cultural operating system will be one of the principal challenges facing healthcare in the early decades of the 21st century. But difficult as this task may prove to be, it will pay remarkable dividends. For given the recognition and support they deserve, these new medical colleagues can help us find sustainable solutions to many of the seemingly intractable problems that now plague all modern healthcare systems.

We offer this White Paper as a series of preliminary notes on this new operating system.

- Tom Ferguson, M.D.

- Austin, Texas, January 2006

References

1. Thomas S. Kuhn, The Structure of Scientific Revolutions, (First ed.) (Chicago: University of Chicago Press, 1962). Return to text
2. A medical paradigm is a predetermined professional framework that specifies the appropriate role of the members of the profession, the role of those they care for, the type of work to be done, the types of problems to be studied, and the appropriate methods to be used. Return to text
3. Thomas S. Kuhn, The Road Since Structure, (Chicago: University of Chicago Press, 2000), pp. 165-177. Return to text
4. Ibid., pp. 165-177. Return to text

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