In The Decision Tree, author Thomas Goetz offers a clear, balanced perspective of the personalized medicine and patient empowerment movements sweeping America.
The book is divided into 3 parts:
1. Prediction and Prevention
2. Detection and Diagnosis
3. Treatment and Care
The following is a sampling of the main ideas presented throughout the book, and an evaluation of them from the perspective of a former patient with experiences in the American healthcare system.
1. Support for genetic testing as a foundation for disease prevention.
Patients should get genetic testing (23andme.com) to better tailor treatments to them as individuals, instead of relying on statistical estimations from broad population studies.
Agreed. However, I was left wondering why we can't just have everyone, genetic risks or not, implement positive behavior changes geared to prevent chronic disease. However, since Goetz is focusing on the big picture, he is right to assume most of the population will not become active participants in their health until faced with a health risk or problem as a result of a test, so I can understand the argument made for genetic testing for consumers.
- Against paternalism in the medical profession.
Patients should get access to their genetic test results, and be told if they have risks for life threatening conditions (e.g. cancer), because they will not only not face adverse emotional effects from the news about their disease risks, but will also see improvements in outcomes over time due to increased proactivity.
"For every 1 percent higher risk a person had of developing Alzheimer's, he or she was 5 percent more likely to make certain positive behavior changes."
"Traditional science is the laggard here, because it takes years for researchers to examine these technologies and and assess their effectiveness. By using the very principles of that health behavior research has established--personalized information is more effective than generalized information, as is setting goals and incremental goals within them--Nike+ and its ilk are far ahead of anything the medical community has come up with."
- Behavior change is important for preventing disease, sometimes more than conventional medicine.
Having seen the dramatic effect a few lifestyle changes have been for the curing of a "chronic" condition, I was grateful that behavior change was emphasized as a key factor for preventing the onset of illness.
On the other hand, I was disappointed that behavior change was not mentioned at all in the part about Treatment and Care, nor in most of the Decision Tree examples...as if the only effective treatments are pharmaceuticals and surgical procedures!
Au contraire. The experiences of my fellow patients in the growing Quantified Self and citizen scientist communities in San Francisco will serve to disprove the notion that pharmaceuticals are the most effective interventions. Rather, they indicate that behavior change in the relatively unsexy lifestyle factors (diet, exercise, sleep) are often underrated in efficacy for treatment of common chronic conditions (e.g. diabetes, metabolic syndrome).
- Personalized medicine is a better approach than generalized information from population studies.
Agreed with the conclusion, but not with the argument that brings us to the final verdict. In an argument about the importance of personalized medicine, there is a story about HRT (hormone replacement therapy), in which the author throws out the baby with the bathwater. This is a finer point that few people unaffected by hormone deficiencies will appreciate, but one that shows a degree of lack of care in research. The side effects reported in the cited study on estrogen-progestin studies are for synthetic hormones, which is dramatically different from the outcomes in studies on bio-identical hormones (identical to the ones produced endogenously in our bodies). Synthetic hormone treatments were created by pharmaceutical companies in order to hold a patent and sell the drug. So if synthetic hormones were the only treatment available to patients, then we should by all means use a personalized medicine perspective to ensure the drug is effective for them, but it is not exactly the case. There's nothing wrong with personalized medicine, but the premise of the argument is based on flawed assumptions.
- Support for decentralization of medical information, and release to patients.
Online patient-to-patient platforms serve a social networks for patients to gain insights that often elude even doctors about their conditions. These platforms include patientslikeme.com and curetogether.com.
Agreed. These platforms made a significant positive impact on my ability to treat my condition in under 3 years, when about a dozen doctors couldn't figure out to fix the problem. The wisdom of patients who have been through the gauntlet and figured things out for themselves is gold.
Despite certain flaws in argument, the execution of the writing is entertaining for the lay reader, as Goetz doesn't get bogged down with too much technical details over the course of presenting the ideas. This book serves as a greatly illuminating read for the lay reader who wants to gain a familiarity with the topics of healthcare, chronic disease treatment, and behavior change for health and wellness.
For all the talk about personalized medicine, our health care system remains a top-down, doctor-driven system where individuals are too often bit players in their own health decisions. In The Decision Tree, Thomas Goetz proposes a new strategy for thinking about health, one that applies cutting-edge technology to put us at the center of the equation and explains how the new frontier of health care can impact each of our lives.