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	May 6, 2005

The Wisdom of Patients (and the Right to Self-Treatment) The idea: If our health care system wants to get more information to patients so they can start to manage their own health, they might start by tapping the greatest source of health information -- other patients. During my recent visit to the hospital for my kidney stones, I was impressed at how forthcoming the doctors and nurses were with information about the condition, how they treat it and how to prevent it. I'm a great believer in preventative medicine first, in self-diagnosis and self-treatment second, and in reliance on health care professionals only when the first two aren't enough. I believe one of the reasons I was given so much information without even requesting it, and why I was fast-tracked through the system while others languished in the waiting room, is that the triage nurse recognized this, respected my self-research and my knowledge (precise dates and symptoms of previous stones, type of previous stones -- calcium oxalate, precise time of onset of current attacks, and precise times and doses of medicines taken), and trusted that I was only there because I really had to be there, as a last resort. In short, I was treated with respect, as a fellow 'knowledge professional' who had done everything possible to streamline their workload. My sense is that this is the future of health care. It is simply absurd for people to take no responsibility for preventing, diagnosing and treating their own medical conditions, though because of our Western obsession with litigation, no one who can be sued is willing to collaborate actively in these three self-care processes. Self-management of one's health is not only more economical (though I confess it may not be as economical as the remarkable trend to health care outsourcing to Thailand and India), it is more efficient, more effective, healthier, safer and more pleasant for the patient. But because of the fear of litigation, our tele-health, paraprofessional, pharmacy and public information services all withhold controversial, risky and leading-edge health care information, and stamp everything with the mantra "Before taking any action on this condition, patients should always consult with a health care professional." In fact, in the US the right to self-treatment was removed in 1914. This adds to the bottlenecks in our health care system, encourages patients to abrogate their responsibility for self-management of their health, and forces medical professionals to do an enormous amount of work that could easily be done by others (including the patient himself), resulting in unnecessary cost to the health care system and (because of the large amount of wasted travel and waiting time) to the economy as a whole. When I spoke with the doctors during my kidney stone attack, they gave me ambivalent advice on diet to prevent recurrence of the condition. When I questioned them further, they shrugged and confessed that the only dietary advice that everyone agreed upon was the need to drink a lot of water every day. So I decided to fact-check them by going to reputable sites on the Internet to see what they recommended. Sure enough, the advice from various urology specialists on 30 websites of reputable health-care institutions was extraordinarily self-contradictory: Some health experts say to avoid these foods: While others recommend consuming these foods: all dairy products (limit to minimum RDA), yogurt dairy products (consume at least minimum RDA) tea (black and green), coffee, carbonated beverages (especially colas and drinks with phosphorous), beer, diuretics any liquid (water content overrides oxylates), diuretics, "tea consumption is actually associated with a reduced risk of forming a kidney stone" cocoa and chocolate vegetable juices spinach, beets, okra, kale, chard, parsley, asparagus, broccoli, carrots, celery, eggplant, leafy greens, chilies, green pepper, squash all green vegetables, salads, stir-fry sweet potatoes, turnips, baked potatoes potatoes with skins beans legumes grapefruit juice, pineapple juice, apple juice grapefruit juice, orange juice, grape juice, cranberry juice, all fruit juices all berries, rhubarb, grapes, oranges, apples, pineapples, plantain,  lemon and lime peel, fruits containing seeds: tomatoes, watermelon, guava all fruits especially citrus fruits, bananas, tomatoes, cherries, grapefruit, grapes bran, wheat germ bran, whole wheat bread all foods containing more than 2% RDA sodium (salt), tofu, soybeans, soy milk soy products, 'sea' salt beef, chicken, pork, fish, eggs scrambled eggs peanuts (which are not nuts), peanut butter all nuts, figs and dried fruits nuts, dried fruits black pepper, oilseeds: coconut, mustard, cloves, coriander, cumin, poppyseed dry soup mixes, cream soups, tinned soups vitamin C, D, fish-liver oil supplements and vitamin supplements with calcium calcium supplements, calcium citrate, vitamin C, B vitamins, magnesium supplements calcium antacids cakes, sweet desserts, products containing glucose Confused? Me too. And can you think of anything, other than water, rice and pasta, that isn't on the list at left? So while I have learned to keep up with state-of-the-art developments in several areas of the medical profession, I've learned that not even all the knowledge on the Internet is enough to keep you even a step or two ahead of what medical practitioners are learning (and unlearning) every day. The information that is available is only available from controlled tests done at great expense by medical facilities, research hospitals, pharmaceutical companies (very suspect due to their conflict of interest) and academia. What is missing most notably is the Wisdom of Crowds -- or more specifically The Wisdom of Patients. What I want, in order to resolve the contradictory advice of the above table, is the 'vote' of the ten million people worldwide who get kidney stones every year on what diet works, and doesn't work, for them. If we had this information (and for all ailments and injuries, not just kidney stones) I suspect that health care costs, emergency admissions, misdiagnoses, human misery and death would all plummet. Yet I have searched in vain for some medical project, anywhere, whose purpose is to capture The Wisdom of Patients. If you know of some graduate student in medicine or information science looking for a thesis project, or a good cause, maybe you could suggest this to them. And tell them not to let the lawyers intimidate them. Knowledge is always trying to be free. Cartoon by Jim Morin for the Miami Herald -- in Florida, the right to self-treatment ranks up there with, er,the right to have your vote counted. 9:26:34 AM  trackback []  comment []

© Copyright 2005 Dave Pollard. Last update: 01/06/2005; 6:35:17 AM.