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  Looking Ahead:
Online Health & the Search for Sustainable Healthcare

Previous generations assumed that we would always rely on nonrenewable fossil fuels to meet our energy needs. They regarded environmental pollution as an inevitable byproduct of economic development. And they assumed that we would always rely on medical professionals to supply all the health care we needed.

They were wrong on all counts. But while we are now actively protecting our environment and developing sustainable energy resources, we are just beginning to understand that our present healthcare system is also becoming unsustainable:

  1. Costs have increased to the point where we can no longer afford them.
  2. Many patients feel that the present healthcare system no longer meets their needs.
  3. Many of our fellow citizens have little or no access to professional care.
  4. Our medical care system itself has become a leading threat to the public's health.

Like our colleagues in energy and environmental studies, those of us concerned with the public's health are beginning to realize that we too must reinvent our industry for the 21st Century. But in many ways, we are more fortunate than they, for the Internet provides a variety of remarkable new tools we can use to make health care more sustainable.

Unsustainable Healthcare

In her article in the July 26, 2000 issue of the Journal of the American Medical Association, Johns Hopkins professor Barbara Starfield, M.D. reviewed some of the deficiencies of our present medical care system:

  • More than 40 million people have no health insurance.
  • 20 to 30 percent of patients receive improper care.
  • Of 13 countries examined in a recent comparison, the United States ranks 12th-behind Japan, Sweden, Canada, France, Australia, Spain, Finland, The Netherlands, The United Kingdom, Denmark, and Belgium.
  • Medical mishaps account for an estimated 225,000 deaths per year, making professional healthcare the third leading cause of death in the United States, after heart disease and cancer.

The rise of the informed, involved, empowered e-patient and a shift to Information Age health care may help correct many of these long-standing deficiencies.

Our Last System Upgrade

Before the arrival of the professional medical tools that have dominated 20th Century medicine, most health concerns were managed at home. The citizens of the day would typically keep a good supply of herbs and other home remedies on hand. When illness struck, they would call upon their personal networks of kin and community. From time to time, they might ask a neighbor for advice, or seek help from an older neighbor woman with extensive experience in caring for the sick.

When the people of the Nineteenth Century spoke of their "family physician," they were referring not to a person but to a book. Detailed encyclopedias of lay medical practice occupied a place of honor in many homes. One of the most influential was The Domestic Medicine, by William Buchan, M.D., one of the great best sellers of its day. Buchan provided his readers with detailed instructions for dealing with a wide variety of "diseases, conditions, and calamities" at home-from Quinsy, Consumption, and Dislocation of the Jaw, to Swooning, Low Spirits, and Noxious Vapors. The entire text of The Domestic Medicine is currently available online. It makes for fascinating reading. (www.webroots.org/library/usameds/dommed00.html).

In the closing years of the Nineteenth Century, the cultural persona of the physician as we know it today-knowledgeable, authoritative, and universally respected-did not exist. While some physicians were revered because they were devoted and able healers, a variety of non-physician resources-midwives, homeopaths, naturopaths, and a variety of layfolk with special medical competence-were accorded the same high regard. By contrast, physicians of poor reputation were regarded as little more than unscrupulous vagabonds. Most citizens took responsibility for their own illnesses and injuries, turning to health professionals only in extreme situations. And citizens had unhindered access to the full range of medical tools and treatments that were available.

The 20th Century brought a Progressive Era dream of a physician-centered healthcare system that would protect us from much of the suffering produced by the disease, accident, and injury that human flesh is heir to. Physicians were acknowledged as our most valuable medical experts, and the flowering of scientific knowledge often made it possible for them to provide a superior level of care. As a result of this cultural shift, most of the newly-emerging medical tools-the microscope, sophisticated medical tests, powerful new medications, and a variety of other high-tech treatments-became, in effect, their exclusive intellectual property. And many of the most effective tools and medications, formerly available to all, were put under their control.

This seemed a good and reasonable thing to do at the time. And for the most part it served the common good. The scientifically-trained medical professionals of the day put these tools to good use, bringing their patients an impressive list of benefits.

But there were unintended consequences of this new arrangement. The layfolk of the time, deprived of their customary medical tools and forced to leave virtually all health matters up to their physicians, became less and less capable of managing their own health concerns. By the end of the First World War, lay medical competence, once a robust and vigorous reserve of social capital, wavered, withered, and finally died. The American citizenry, previously the masters of their own medical destinies, were gradually transformed into passive patients, dependent on their health professionals.

Healthcare, formerly organized around the home, began to organize itself around the physician's office. A variety of medically-experienced layfolk-housewives, midwives, grandmothers, folk healers, and a variety of others who had been caring for their friends and neighbors for many generations-were now forced to pay a fee and obtain the doctor's permission to purchase their customary medications. Instead of being cared for by family members in the home, the ill were increasingly transported to new medical institutions, where they were cared for by professionals.

The Century of the Physician

The cultural elevation of the scientifically-trained physician to the role of ultimate arbiter of all things medical was the central theme of 20th century healthcare. There was little or no healthcare policy development, planning, or research in the entire 20th century that was not powerfully shaped by the assumption that physicians-and to a lesser extent, other medical professionals-should be the key players in all medical matters. The very term healthcare became synonymous with professional medical practice. This cultural realignment worked fairly well for many decades. It was not until the final third of the last century that the unquestioned authority and autonomy of professionally-centered medicine began to come under attack.

"We face a massive [healthcare] crisis," President Nixon told the nation in July 1969. "Unless action is taken... we will have a breakdown in our medical system." The American press corps, which till now had been providing their readers with an unbroken chorus of praise for the American physician, suddenly began competing with each other to come up with stories even more critical than what had come before: Healthcare was disorganized, ineffective, and far too expensive. The editors of Fortune, the voice of the business community, joined the attack. "...Americans are badly served by the obsolete, overstrained medical system that has grown up around them helter-skelter... the time has come for radical change."

Within a few years, there was a significant erosion of public confidence in physician-directed healthcare. Everyone suddenly seemed to agree that something was seriously wrong with our healthcare system. Lawmakers stepped in to take control of "skyrocketing medical expenditures." Business leaders and economists warned that the U.S. populace must find a way to curb our nation's seemingly insatiable appetite for professional medical services. For the first time ever, medical practice was subjected to the hard disciplines of fiscal reality. The contemporary "health care crisis" was born. And with it came the beginning of a widespread cultural change in Americans' attitudes toward their physicians. The most authoritative account of the changing role of the physician in the U.S. healthcare system from the Eighteenth Century through the mid-1970s can be found in Paul Starr's The Social Transformation of American Medicine (Basic Books, New York, 1982), from which these examples are taken.

Our Bodies, Ourselves

In 1970, the Boston Women's Health Book Collective published the first of many editions of their landmark book, Our Bodies, Ourselves. In some respects, it resembled the medical guidebooks of the Nineteenth Century, providing detailed self-care guidelines for managing a wide range of physical and mental concerns. But it went far beyond earlier efforts in several respects:

  • It encouraged readers to educate themselves on the technical details of their own health concerns, to question their providers' explanations and opinions, and to take an active role in managing their own care.

  • It described some of the built-in limitations, hazards, and shortcomings of physician-provided care delivered via brief, time-pressured doctor visits, and suggested activist strategies informed patients could use to get the best possible medical care.

  • It was based not on the technical knowledge of a single medical professional, but on the in-depth personal experiences of hundreds of women-working in cooperation with dozens of supportive women medical professionals.

Our Bodies, Ourselves served as the prototype for a new generation of medical guides which suggested that lay readers faced with a medical concern could and should develop a new type of just-in-time lay medical competence, drawing on both medical and popular sources, which would enable them to play a more responsible role in managing their own health care. In the years that followed, a succession of health-related "movements" were featured in the popular press. There was the women's health movement, the natural childbirth movement, the alternative health movement, the wellness movement, the self-care movement, the natural foods movement, the fitness movement, the hospice movement, the medical ethics movement, and many others.

The activist medical consumer became an established figure in the popular consciousness. By the mid-90s, the populace was well aware that professional healthcare had its limits. The age of unquestioned "doctor's orders" had been replaced by an era of "shared medical decision-making." These cultural changes set the stage for what may turn out to be the most significant popular health movement of all.

The online health movement began on a handful of dial-up computer bulletin boards and early commercial computer networks in the late 1970s and 80s. It mushroomed with the growing availability and accessibility of online services like America Online, CompuServe, and Prodigy in the early 90s. It received a massive boost in 1994 when Netscape released the first free Internet browser. And in the waning days of the 20th Century, it reached a remarkable milestone: On that day and forever after, the typical US adult, when faced with a health concern, would be more likely to seek information and advice on the Internet than from a face-to-face visit to a local health professional. By August, 2001, Americans were more than twice as likely to turn to the Internet as to consult a physician.

The Search for Medical Sustainability

In the medical paradigm of the 20th Century, patients were seen as no more than the recipients of professional care. But if my online health cronies and I are reading the tea leaves correctly, it will be our new generation of e-patients-and their children, grandchildren, and great-grandchildren-who will increasingly serve as vital resources in 21st Century healthcare. These well-connected, medically competent layfolk will manage much, and, eventually, most of their own medical care, calling on a variety of resources-online information, online networks of friends and family, online patient helpers, online support groups, both distant and local medical professionals, and new online medical guidance systems yet to be developed.

Thus these smart, savvy, involved e-patients, who have "gone to medical school on the Internet" have the potential, given the appropriate support, to become the "solar cells" or "renewable resources" of medicine, serving many of our citizens' unmet medical needs and improving the quality of available medical services at little or no cost. Here are just a few of the areas in which the voluntary services provided by e-patients might prove helpful to our healthcare system:

Experienced e-Patients Helping Other Patients

Patients newly diagnosed with a serious illness could routinely be provided with online access to Net-savvy survivors and online support communities for their condition.

Providing Effective Online Resources for Targeted Health Concerns

Online support communities for a given condition might work together with medical professionals specializing in this disorder to develop effective, in-depth, condition-specific Web sites for targeted conditions. Such condition-specific support sites might make it possible for e-patients and their families to provide for themselves with many aspects of medical care currently provided by professionals.

Providing e-Patients with the Medical Tools they Need

Patients with selected medical concerns could be provided with medical tools, medical skills, and self-management training that has already proved effective in patient-controlled analgesia, patient-controlled anticoagulant management, and diabetic self-care.

Co-care Partnerships between Providers and e-Patients

Experienced self-helpers, working in networked teams with online health professionals, could help to provide online care for other patients with the same condition.

Patient-Directed and Patient-supported Medical Research

Online networks of patients with the same medical condition could plan and carry out research on their shared condition, while other online support networks could help professional researchers identify promising areas of study, and recruit participants for clinical trials.

Universal Medical Literacy

If Information Age healthcare is to make the most effective possible use of e-patients, we must re-examine the way we now teach our children about medical matters and must do all we can to help them develop the skills and attitudes that will make it possible for them to play a central role in their own health care, and that of their friends and family members.

Online Health and the Path to Sustainable Healthcare

The emerging fields of online health resources and medical sustainability studies are still in their infancy. But many of us who have devoted ourselves to this area are already convinced that the 21st Century will be the Age of the Net-empowered e-patient, and that the health resources of today will evolve into even more robust and capable medical guidance systems which will allow growing numbers of e-patients to play an increasingly important role in medical care. Online patients will increasingly manage their own health care and will contribute to the care of others. Medical professionals will increasingly be called upon to serve as coaches, supporters, and coordinators of self-managed care. And a variety of powerful new online health resources will become available to all-including the uninsured and the medically underserved.

And if we truly wish to make healthcare more sustainable, the relationship between health professionals and patients must be renegotiated. Fortunately, this is already beginning to happen. In his article, "What Doctors Don't Know (Almost Everything)," internist Kevin Patterson, writing in The New York Times Magazine (May 5, 2002, pp. 74-77) describes the process as follows:

...[P]atients, working with their physicians and armed with medical data, are better equipped to make decisions that work for them than doctors of the Marcus Welby model are, because they understand their own expectations better than their physicians can.

[The new scenario goes like this:] the physician makes diagnoses, serves as a conduit of the medical data and is responsible for framing those data and putting them into context, but the responsibility for the decision becomes the patient's... [We are realizing] that the conclusions doctors reach from clinical experience and day-to-day observation of patients are often not reliable. The vast majority of medical therapies, it is now clear, have never been evaluated by systematic study and are used simply because doctors have always believed that they work...

The instant the practitioner stops saying, ''I think you should take this therapy,'' and starts saying, ''The evidence is that this therapy will work this percent of the time, with these complications, this frequently. What do you want to do?'' then the power hierarchy of doctor over patient is collapsed, and autonomy is assigned to the patient.

Published in The Ferguson Report, Number 9, September 2002


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