A First Look at “The Decision Tree”
Thomas Goetz’s first book, The Decision Tree, was released yesterday. Though his role as the executive editor of Wired Magazine guarantees his ability to tell a tight story about a complex subject, it is his master’s degrees in public health and American literature that qualify him to write passionately and insightfully about patient navigation of the American health care system.
The subtitle of the book, “Taking Control of Your Health in the New Era of Personalized Medicine,” confirms that this is a manifesto of patient empowerment. “Know thyself” is the implicit theme of much of the book, as Goetz ardently advocates gaining knowledge of one’s own genetic and environmental health factors to the fullest extent possible; from simple activities such as measuring daily weights to privatized personal genomics — having your DNA assessed for predisposition to thousands of different health conditions by vendors such as 23andMe and Navigenics. Goetz explores and refutes the idea that certain knowledge, such as the knowledge that you have a terminal illness for which there is no treatment, can be toxic in it’s own right. Rather, he seeks to illustrate — with the results of several clinical studies — that all knowledge about your personal health is valuable and should be sought after.
Goetz cautions, however, against the pitfalls of countless regularly administered screening tests, particularly with regard to patients’ understanding of the results. One of the more notable examples he discusses is the PSA test for prostate cancer, known in the medical community to produce both a high number of false positives (men who screen positive but don’t actually have cancer) and false negatives (men who screen negative but do in fact have cancer). A knowledge of what the test actually does (and doesn’t) prove is thus vital to anyone considering such screening, especially when treatment options typically include surgery or radiation therapy, both with frequent side effects such as impotence and incontinence.
Goetz also specifically touches on the value of “computerized decision tools… available to help people understand their situation and make good calls.” He concludes that “these these tools can have a remarkable impact on the quality of our decision making.” Goetz elaborates,
Do these tools actually help patients? Do they overcome our fuzzy thinking or confuse us all the more? To answer that question, Dr. [Annette O'Connor, PhD; professor of nursing and epidemiology at the University of Ottawa] reviewed nearly 200 studies that assessed a specific decision tool. These tools helped patients face specific situations, from breast and colon cancers, to diabetes, to osteoporosis treatments. The cumulative answer divined from these 200 studies was that yes, decision tools lead to better decisions, as demonstrated by all sorts of metrics. Fewer patients using decision aids reported feeling uncertain or unclear about their options, and more had made up their minds on a course of treatment after using a decision aid. What’s more, patients using decision aids had better understandings of the risks and rewards of treatment…. Patients using decision aids seemed to get better care than those acting solely on their physician’s guidance. And compellingly, patients chose less surgery when they understood their options. They preferred a behavioral or drug therapy over an invasive procedure 24 percent more often after consulting a decision aid.
Perhaps of most interest to me personally, Goetz takes a deep dive into the realm of online patient support communities, specifically PatientsLikeMe. The internet, and particularly social media, is a relatively new resource for patients, and one that definitely “unnerves the medical establishment.” Back in 2001, the American Medical Association made a more candid statement: “Trust your physician, not a chat room.”
But the 40,000 registered members of of PatientsLikeMe, who have bypassed HIPAA entirely by volunteering their own personally-identifiable health information, are clearly not only finding emotional support through their online interactions, but gaining valuable knowledge about their conditions through the experiences of others. My own, limited, firsthand observation of PatientsLikeMe over the past six months tells me it’s a breakthrough platform that will only continue to gain momentum as a resource for sufferers of chronic conditions.
The Decision Tree is a remarkably accessible book for the amount of scientific and medical knowledge conferred to the reader. Whether or not you have a professional interest in the health care system, you should certainly have a personal interest in your own health; and in that case, I recommend you get your hands on a copy.
(Cover image respectfully borrowed from www.thedecisiontree.com. I make no claim to any rights thereof.)
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