Hagströmer Lecture 2017

Nuisance or Necessity? Historical Perspectives on the ‘Informed’ Patient.
Speaker: Nancy Tomes, Distinguished Professor, State University of New York, Stony Brook.
The following guest blog by Nancy Tomes is a condensed version of her talk on May 29, 2017. You can watch the whole lecture at YouTube: here.

Introduction
The Hagströmer Lecture is a yearly lecture at the Hagströmer Medico-Historical Library, in which an internationally renowned historian addresses a subject that is currently debated in medicine, healthcare, or the life sciences, and puts this debate in historical perspective.

This year’s lecturer Nancy Tomes has taught history at Stony Brook since 1978, after earning her Ph.D. in History from the University of Pennsylvania, where she studied with Charles E. Rosenberg. Tomes has authored four books: A Generous Confidence: Thomas Story Kirkbride and the Art of Asylum Keeping (Cambridge, 1984; U Penn, 1994); Madness in America: Cultural and Medical Perceptions of Mental Illness Before 1914, with Lynn Gamwell (Cornell, 1995); The Gospel of Germs: Men, Women and the Microbe in American Life (Harvard, 1998), and Remaking the American Patient: How Madison Avenue and Modern Medicine Turned Patients into Consumers (UNC Press, 2016). She also has co-edited two collections, Medicine’s Moving Pictures, with Leslie Reagan and Paula Treichler (Rochester, 2007) and Patients as Policy Actors with Beatrix Hoffman, Rachel Grob, and Mark Schlesinger (Rutgers, 2011). In collaboration with Duke University Library’s Special Collections, Tomes developed “Medicine and Madison Avenue,” a website on the history of health-related advertising, available at http://scriptorium.lib.duke.edu/mma/

Tomes’ research has been supported by numerous foundations in the United States, among others the Rockefeller Foundation, the National Institute for Mental Health, and the National Library of Medicine. She won both the American Association for the History of Medicine’s Welch medal and the History of Science Society’s Davis prize for The Gospel of Germs. In 2011, the American Public Health Association awarded her the Arthur Viseltear Award for “her distinguished body of scholarship in the history of public health.” She received the prestigious Bancroft Prize in 2016 for Remaking the American Patient. From 2012 to 2014, Tomes served as President of the American Association for the History of Medicine. In 2015, she was promoted to the rank of Distinguished Professor, State University of New York.

Nuisance or Necessity? Historical Perspectives on the ‘Informed’ Patient.
Today millions of people across the globe are using their digital devices (computers, laptops, cell phones) to get information about their health, their doctors, and their hospitals. In the United States, the use of the Internet to get health information has provoked controversy. On the one hand, advocates of patient engagement see the Internet as a positive and potentially transformative force. In the words of Tom Ferguson, one of the early pioneers of the e-patient movement, “individuals who are equipped, enabled, empowered and engaged in their health care decisions” can “help us heal healthcare.” Yet this “new breed of informed health consumer” has aroused resistance as well, especially among physicians. The Medical Googler has become a flashpoint for debates about whether laypeople can really be trusted to understand all the information they can now access. This resentment is reflected in a mug available for purchase emblazoned with the motto, “Please do not confuse your Google search with my medical degree.”

One assumption that both admirers and critics of the Internet-using patient often make is that the Internet has “created” this problem. While I agree that the Internet is a truly significant development, the fundamental conflicts it raises over patients’ access to information, where it comes from, how reliable it is, and how it affects their trust in doctors, are not new at all. When it comes to content, much of what patients find on the Internet is not radically different from what was available in other forms via the now “old fashioned” print and electronic media (such as radio, and TV) and circulated through patient self-help groups that well predate the Internet. In order to recognize what’s different about the Internet’s version of the informed health consumer, it is useful to compare and contrast here with the experiences of past generations.

With that purpose in mind, my talk introduces some of these earlier information seekers and the debates they sparked within the American medical profession. While I focus primarily on the 20th c., I acknowledge that patients challenging their physicians with information gotten from other sources started long before that. Since the early modern period, the combination of growing literacy and cheap print has been a fertile source of popular unrest with medical authority. But due to sweeping changes in medicine, advertising and mass media, 20th c. doctors and patients have made choices within an increasingly richer and faster moving information environment. Many familiar features of our contemporary informational landscape originated in print media before migrating to electronic and now digital media: physicians’ advice columns, articles about the latest medical miracle or best diet, and lots and lots of drug advertisements.

Moreover, what doctors had to explain and patients needed to know also became more complex as medical science exploded in the post-World War I era, and the nature of the diseases being treated changed from communicable diseases to heart disease and cancer. The medical encounter increasingly revolved around conditions that lasted longer and were more difficult to cure, making trust and cooperation between doctor and patient all the more important. In light of these trends, American doctors assumed, understandably, that their patients would question them less, not more, as the 20th c. progressed. Yet the evolution of American medicine also provided fertile ground for the commodification of information and encouraged patients to adopt some not-so-deferential ways to use it.

Ironically, the medical profession itself encouraged the rise of the informed patient by educating the public about how avoid so-called quacks (osteopaths, chiropractors, Christian Scientists) by evaluating a physician’s qualifications (degrees, medical society memberships, hospital affiliations). In addition, doctors sought to discourage patients from “wasting” their money on heavily advertised drugs and treatments. But laypeople taught to be savvy shoppers when it came to the medical “quack” or dubious tonic did not necessarily stop there. Habits of critical thinking that doctors encouraged when patients were contemplating a Christian Science practitioner or a bottle of tonic in the local pharmacy were not so welcome when directed at the doctor himself.

Some patient-consumers began to do just that during the Great Depression as part of a broader middle class concern with “getting their money’s worth.” Initially concerned with proprietary medicines, critical consumerists began to cast a critical eye on medical services, as in a 1935 article titled “Shopping for Medical Care” that appeared in Consumers Research’s Monthly Bulletin. Although chilled by the second Red Scare, the progressive wing of the consumer movement continued to grow in the 1950s and found new respectability in the 1960s as criticism of mainstream medicine exploded.

Post WW2 principles of “free enterprise” made it all the harder to swat down the idea of the educated consumer or to suppress news stories about medicine’s failings. Advice that patients best be wary and inform themselves accordingly turned up in mainstream magazines of the sort doctors routinely stocked in their waiting rooms. A case in point was media coverage of the debate over unnecessary surgery. As the number of operations began to rise in the early 1950s, so did debates among physicians over whether they were all necessary. In a pattern that would frequently repeat itself in years to come, what began as an in-house argument confined to medical conferences and journals got picked up by national magazines, including U.S. News and World Report and Reader’s Digest. Such articles emphasized the need for lay people to protect themselves by getting second opinions before surgery, switching doctors if they spotted the telltale signs of unethical behavior, and reporting suspicious behavior to the local medical society.

Physicians complained loudly in the 1950s about the bad press they were getting. But their complaints had limited impact because information had become a commodity in and of itself: stories about medicine, whether the latest miracle OR controversy, sold magazines and newspapers. Nor could the medical profession avoid producing fodder for the “muckrakers”; as medical knowledge exploded, so too did internal variations in treatment, so the lay person who decided to consult the scientific literature to find out if a procedure was recommended might well discover that physicians themselves did not agree about it.

As the problems in the U.S. health care system escalated in the 1960s and 1970s, so too did the popular quest for patient health information. As medicine and pharmaceuticals became big business, their economic behavior came under increasingly hostile scrutiny. The various “rights” movements of the post war period made patient-consumers more inclined to question medical authority. The 1960s that brought to maturity a generation of Americans who were more prosperous and better educated than their Depression era parents, and more willing to criticize the “medical establishment.”

These new patients bankrolled a spectacular explosion of print health information in both book and magazine formats. The health sections of libraries and bookstores expanded dramatically. Mass market magazines and newspapers continued to carry many articles concerning health care issues. Between 1970 and 1980, the pages devoted to health and medicine in the Readers’ Guide to Periodical Literature increased nearly tenfold in number. Compared to their 1950s antecedents, this literature was far more openly critical of doctors and supportive of patients’ rights and abilities to make decisions about their own care.

Slowly the idea of the “informed” patient moved from an outsider position—associated with neurotics, Communists, and health faddists—to respectability. As efforts to bring down health care prices and improve quality foundered, politicians and policy makers on the right and the left became receptive to the idea of enlisting informed patients as allies. The patient-watchdog could be used to foster quality control in a medical world where innovation was frequent and professional oversight could be hard to sustain. With the advent of Reaganism in the 1980s, fostering consumer “choice” in place of government regulation became an even more popular remedy. One of the many ironies of the 1970s health information ‘revolution’ was the legitimation it gave to overturning traditional restrictions on health advertising, such as voluntary restraints on direct to consumer advertising of prescription drugs and the lifting of the American Medical Association’s ban on physician advertising. New forms of prescription drug and hospital advertising only escalated patients’ need for more objective assessments of medical products and services.

These developments paved the way for the 1990s “discovery” of the Internet. Far from being a radical development, there were many continuities in the development from print to digital forms of information. Much of what patients seek out today are very similar to what patients in the 1930s, 1950s, and 1970s were seeking.

How does this historical comparison help us understand the challenges presented by today’s Medical Googler? First, it helps us appreciate what the Internet has done that is different. It has certainly made the hunting and gathering of information much easier. Perhaps more importantly, the Web 2.0, as it’s called, has vastly multiplied the ease with which users can generate content and create virtual communities. It’s this connectivity that now makes web-based information so new and distinctive. You can not only get information but also connect with people around that content in a huge variety of ways, including email, blogging, Skyping, and social media such as Facebook or Twitter.

But plenty of problems remain. Even though the digital divide has narrowed substantially in the last decade, groups we very much want and need to reach—the elderly, people of color, rural residents, and the very poor—are less likely to have access to the Internet’s researches. In the U.S., this “information hunt” covers everything from the choice of an insurance plan to the side effects of your prescription drugs. This scaling up of the requirements to be “informed” tends to favor the privileged. Then there is Internet advertising. In today’s wired world, commercial actors are well financed, command great creative talent, and are relentless in their bid to bring advertising to every nook and cranny of our lives. There is no way that we can scrub the Internet of this kind of information, much less all the other forms of questionable material out there on the World Wide Web.

But as this talk has shown, greater access to information has not magically created new disturbances in the health care system where none existed before; rather those disturbances have persistently fueled patients’ determination to acquire more information. E-tools are not a magic wand we can wave over all the dysfunctions of the health care system and poof, make them go away. They have both good and bad aspects, and we need to be patient in addressing those problems.

So, what about solutions? Let me share a few thoughts. Patients trying to be better informed are here to stay so it’s best to adopt the motto “if you can’t beat them, join them.” To doctors, I would say skip buying the Google mug and work with your local medical librarians and other patient educators to draw up a list of resources you find useful and want to recommend. Use the enhanced potentials of connectivity to push back against the very real problems that exist in health care today, starting with the relentless hollowing out and fragmentation of the time that health care professionals and their patients spend together. There is a world of good ideas being tried out, and librarians are leading the way in this regard.

In the end, the debate about Medical Googlers is at heart a debate about patient engagement. With or without the Internet, the ideals of participatory medicine are hard to fulfill but we have no choice but to pursue them.

Nancy Tomes, 23 August 2017