Establecimiento de políticas, estrategias, metas e indicadores

Some 20th century clinicians and health educators once believed that it might be possible to “empower” patients by providing them with targeted medical information, “prescribing” selected medical content in much the same way that clinicians currently order prescription drugs. We now know that empowering patients requires a change in

the patient’s level of engagement, both with their illness and with their clinicians, and in the absence of such changes, clinician-provided content has few, if any, positive effects. Some studies have even suggested that such top-down “targeting” of patients by

professionals may be harmful. When Elizabeth Murray and her colleagues at the

Cochrane Collaboration reviewed the medical literature for studies in which chronic disease patients had been targeted by professionally-developed interventions via the Internet, they found that even though the targeted patients showed an increased knowledge of their condition and an increased perception of social support, the interventions had no effect on the patients’ sense of self-efficacy or on their health- related behaviors.5 And these patients had worse outcomes than those who were left alone.

The same effect has been observed in other professional efforts supposedly intended to “empower” patients, (e.g., telemedicine, Information Therapy, patient handouts, etc.). Unless the underlying relationships between clinicians and patients are fundamentally transformed, professional interventions do not empower patients.6

For the earliest evidence of this insight, consider the work of White Paper Advisor Kate Lorig and her colleagues at Stanford’s Patient Education Research Center

(http://patienteducation.stanford.edu). Beginning in the early 1980s, as part of their efforts to help patients learn to manage their health more effectively, Lorig and her colleagues discovered that when it came to empowering arthritis patients, “Content did not matter.” The success of Lorig’s early programs came not from the specific medical content they provided (e.g., “rheumatoid arthritis is a disease of the connective tissues in which inflammation affects the joints and other organs of the body”), but from

successfully communicating the idea that patients really can effectively manage their own illnesses. This concept was imparted through “patients-really-can-run-the-show” messages, encouragement, support, training and rehearsing, as well as proactive modeling in the art of devising and carrying out an action plan based on one’s own agenda, be it losing weight or confronting an inadequate physician.7

Just as Lorig’s model would predict, many professionally developed IT systems

designed to “empower” patients have just the opposite effect. In one classic analysis of such a system, the late Diana Forsythe, a medical anthropologist at the University of California-San Francisco School of Medicine, described what happened when a

distinguished team of medical informatics professionals set out to build a computerized patient-education system for migraine patients. Her paper, “New Bottles, Old Wine: Hidden Cultural Assumptions in a Computerized Explanation System for Migraine Sufferers,”8 should be inscribed on the cubicle walls of all those who aspire to develop online systems for patients.

The senior developers in Forsythe’s study made four assumptions: (1) that the patients knew nothing about migraines, (2) that what they needed to know was what their doctors wished to tell them, (3) that the only reason the clinicians hadn’t provided the information patients needed was a lack of time, and (4) that while the patients had much to learn from their neurologists, the clinicians had nothing at all to learn from their patients. Forsythe concluded that all of these hypotheses were mistaken.

Many of the migraine patients had read extensively in the medical literature and most knew a great deal about their condition, including many things that their physicians did not know, e.g., exactly what happened during a migraine attack and the best practical ways to manage it. The things the patients wanted to know were radically different from the things the neurologists wanted to tell them.

Other patients were perfectly capable of supplying much of the information their fellow- patients needed. A long list of “nonmedical” questions concerned patients greatly but was not taken seriously by the physicians. The neurologists systematically ignored these questions.

When patients attempted to bring up concerns that their neurologists did not see as strictly medical, they often appeared not to ‘hear’ them, or “attempted to pass the matter off as a joke.” Thus the clinicians effectively ignored or disregarded all but a few

“approved” types of questions. The neurologists’ failure to answer their patients’ questions had little to do with time. They offered little explanatory material and dominated the patient interviews so completely that patients had few chances to ask questions.

The system’s final version did not allow patients to raise the questions that the clinicians habitually ignored. It did not permit patients to describe their experiences in their own words, but forced them to choose from a limited list of doctor-defined options. It did not allow patients to present the many things that they knew that the clinicians did not. It did not permit patients to inform other patients on topics that they knew more about than the

doctors. It did not permit patients to provide the doctors with useful feedback on their services. It also failed to provide a way for patients to give their doctors important feedback and help keep them abreast of the literature.

Like many clinicians today, the developers were unwilling to address the important issues of knowledge, power, and control among doctors, non-physician health

professionals, and patients, that are vital to building any effective IT system. So in the end, they built a technically impressive system that reflected all the same profound cultural defects of care the patients had experienced repeatedly in the clinic.

Forsythe’s untimely death—she died while mountaineering in Alaska—deprived us of one of our most insightful observers in the emerging field of e-patient studies. But we can honor her memory by remembering what she taught us. “In practice,” she once told me, late at night after a long AMIA (American Medical Informatics Association) meeting, “most medicine is ten parts culture to one part real science. From a medical

anthropologist’s point of view, a good deal of what happens in healthcare is invisible to most clinicians. Imagine that.”9