The Wisdom of Patients (and the Right to Self-Treatment)

Posted on May 6, 2005 by Dave Pollard

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.

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10 Responses to The Wisdom of Patients (and the Right to Self-Treatment)

Rayne says:

May 6, 2005 at 09:06

So…basically you’re supposed to eat a healthy, high-fiber, high-fluid, antioxidant-enriched diet.And this would be a bad thing for what other human diseases?;-)
Scott Miller says:

May 6, 2005 at 11:50

Any expert who says that you shouldn’t eat bean, veggies, and fruits is simply not a health expert. Frankly, as a nutrition expert myself, I’ve never seen anyone not recommend these foods. At least not the organic versions (as non-organic versions can have certain negative health issues, regarding pesticides and other chemicals).Dairy, though, is bad news, as it contains the protein casein which is 100% proven to promote cancer growth, and all societies who eat dairy fall prey to “diseases of affluence,” such as the modernized Western countries. For a great summary on this (rather than reading dozens of medical journals), I point people to the recent book, The China Study.
mrG says:

May 6, 2005 at 21:03

I haven’t used the internet much for health-related issues, but when I have, yes, it is remarkable how much contradiction there is — I suspect there is equal contradiction in the real world but that it is not juxtaposed so dramatically by a real-world Google.what also seems to occur is that the quality (and expense) of the webdesign work has no correlation to the worth of the advice.But it’s not just medical advice. one of our junior kids got a pair of Betta fish as a birthday present from a friend. It was a packaged kit that came with some advice, we surfed the internet and got some further advice, and within four days both fish were dead. I talked to the fish-guru at my local and trusted pet store (Gardels in Owen Sound) and she just shook their head. All wrong, all of it.I was told how she and her husband had been similarly misled on their first tank of bettas, and learned of their trial and error.and I was enlightened.What is the difference in these sources? I’d like to think it is because she was willing to tell me where she had failed, and what she’d done to improve. That’s not foolproof, of course, because I know others who are certain they ‘cured’ their cancer through the most bizarre ‘therapies’ and only later mention having expert surgery :) — but it’s a start, the honesty and openness, the human frailty of the testimony … egad, it starts to sound kinda like a religion, don’t it?But that’s the thing. Jesus said, in An Email to The Future ;) how, at the end of days there would be no shortage of prophets. He was asked how then, pray tell (pardon the pun) shall we mere mortals tell the difference, and here’s where he showed his stuff as a quotable person: “Tell them by their fruits.“In Science, we call that “Repeatable and independent confirmation of results” and we prize it even more when the researchers were trying hard to find its opposite, or when they weren’t looking for it at all. If a pharmaceutical company tells you their happy-pill is toxic, I tend to believe them, but if they say it’s fine and dandy and 5 other studies all find it makes your nose fall off, then I start to wonder.So, back to your table, I’m reminded on how I came to be an Einstein-style theist: As soon as you find contradiction, either find the mediating cause, or scratch both items off their respective lists and move on. Having now travelled a goodly chunk of the surface of this planet, it’s remarkable how short my lists have become.
Ray says:

May 7, 2005 at 01:20

Dave, You possess that which you seek. The professionals recommendations are an aggregation of the tales of their patients. This is the wisdom of the crowd.What are you going to do with it?Ray
lugon says:

May 8, 2005 at 15:06

“The professionals recommendations are an aggregation of the tales of their patients.” True! Just look at the face of patients when they hear that! Doctors are not gods – some of them “listen and think” more and better than others. So what you want is a network that “listens and thinks”? Hmm …
Rayne says:

May 8, 2005 at 16:26

Ray’s on to something, Dave. One of the lessons Deepak Chopra (a doctor of western medicine and an ayurvedic holistic practitioner) teaches in his work: you have everything you need in this moment. We already know the answers, but fail to look deeply enough within or without to see them, relying instead on someone or something else to mirror the answer. Maybe the use of aggregated patient feedback will help us become better at listening to ourselves for an answer.
Dave Pollard says:

May 8, 2005 at 23:34

Thank you, wise readers. Much to think about, here, both as patients and aggregators of knowledge.
Nathan says:

May 9, 2005 at 13:59

Before we go to the 10 million people with kidney stones, lets get the following set up first: effective Adverse Reaction reports for prescriptions drugs. There are an estimated 100,000 American who die each year from adverse reactions to drugs they have been prescribed (estimate from medical journal article). There are heaps and heaps of non-fatal reactions, too boot. The mechanism for reporting these is voluntary, and it has a very low response rate. Getting a system like this together could save lives. As Dr. Graham noted last November when he testified to the Senate, because of the heartattacks caused by the pain reliever Vioxx, an airplane’s worth of people was falling out of the sky every week or two. It went on long after it had to, because the FDA has gutted spending for the monitoring of medicines after they are already on the market. They’ve doubled the funding for the initial tests that get the drugs approved, but these tests can weed out only the highly evident side effects which aren’t (like heart attacks) already common in the population. Having epedimiological data, however, CAN detect that stuff. anyway…
Bruce Winter says:

June 1, 2005 at 14:04

Blogged Widson of Patients today @www.communicationstrategies.blogspot.com
Susan Howard says:

October 2, 2007 at 15:50

My son just had surgery for kidney stones yesterday. His 31st stone. He is only 32. This is the first time anyone even mentioned food consumption as a contributing factor to his condition. The most advice we have been given is to stay away from dark sodas. Not much help as you can see from the frequency of the stone formation. The way I see it, some info is better than none.