Seth's Blog

In 2007, Jon Cousins started tracking his mood to help NHS psychiatrists decide if he was cyclothymic (a mild form of bipolar disorder). After a few months of tracking, he started sharing his scores with a friend, who expressed concern when his score was low. Jon’s mood sharply improved, apparently because of the sharing. This led him to start Moodscope, a website that makes it easy to track your mood and share the results.

I was curious about the generality of what happened to Jon — how does sharing mood ratings affect other people? In January, Jon kindly posted a short survey about this. More than 100 people replied. (more…)

How does personal science (using science to solve a problem yourself rather than paying experts to solve it) compare to other sorts of DIY?

Here’s an example of personal science. When I became an assistant professor, I started to wake up too early in the morning. I didn’t consider seeing a doctor about it for several reasons: 1. Minor problem. Unpleasant but not painful. 2. Doctors usually prescribe drugs. I didn’t want to take a drug. 3. Sleep researchers, based on my reading of the sleep literature, had almost no idea what caused early awakening. They would have said it was due a bad phase shift of your circadian rhythm. They often used the term circadian phase disorder but never used the term circadian amplitude disorder — apparently they didn’t realize that such a thing was possible. I decided to try to solve the problem myself — an instance of DIY. Except that, if I made any progress,  that would be better than what the experts could provide, which I considered worthless.

There are thousands of instances of DIY, from fixing your car yourself to sewing your own clothes to word processing. Here is one dimension of DIY:

1. Quality of the final product. Better, equal, or worse to what you would get from professionals. Richard Bernstein’s introduction of home blood glucose testing led him to much better control of his blood glucose levels than his doctors had managed. Same as my situation: DIY produced acceptable results, the experts did not.

In contrast to Bernstein, who reduced his blood glucose variability within months, it took me years to improve my sleep.  That is another dimension:

2. Time needed. Personal science, compared to other DIY, is orders of magnitude slower.

Here are some more dimensions:

3. Training needed. I don’t know how much training personal science requires. On the face of it, not much. I had acne in high school. I could done self-experimentation at that point. It just didn’t occur to me. On the other hand, I think effective personal science requires wise narrowing of the possibilities that you test. For most health problems, you can find dozens of proposed remedies. How wise you need to be, I don’t know.

4. Commercialization. Some forms of DIY are entirely the creation of businesses — cheap cameras, home perms, IKEA, etc. Bernstein’s work happened because of a new product that required only a drop of blood. The company that made it wanted doctors to do DIY: measure blood glucose levels in their office (fast) rather than having the measurement made in a lab (slow).  When I started to study my sleep, no business was involved. Now, of course, companies like Zeo and the makers of FitBit want users to do personal science.

5. Price. My sleep research cost nothing, which in the DIY world is unusual. The term DIY is almost entirely a commercial category: Certain books and goods are sold to help you DIY.

6. Customization possible. Some kinds of DIY give you the tools to build one thing (e.g., IKEA, home perms). Other kinds (e.g., Home Depot, word processing) give you the tools to build a huge range of things. This dimension is variation in how close what you buy is to the finished product (Ikea = very close, word processing = very far). Personal science allows huge customization. It can adjust to any biology (e.g., your genome) and environment (your living conditions).

7. Benefit to society.  If I or anyone else can find new ways to sleep better — especially safe cheap easy ways — and these solutions can be spread, there is great benefit to society,  by comparison to DIY that allows non-professionals to reproduce what a professional would create (e.g, IKEA).

You might say that personal science isn’t really DIY because, compared to other DIY, (a) it is much slower and (b) the potential benefit to society is much greater. But those features are due to the nature of science. Any form of DIY has unique elements.

My mental picture of DIY is that there are two sides, producers and consumers, and in many domains (health, car maintenance, word processing, etc.) they creep toward each other in the sense that what producers can make slowly increases and what consumers are capable of slowly increases.  When they meet, DIY begins. In some cases, the business has done most of the changing; the DIY is very easy (e.g., Ikea).  In other cases, the consumer has changed a lot (literacy — not easy to acquire). Either way, the new DIY causes professionals who provided that service or good for a living to lose business.

The key point — as far as I’m concerned — in this article about the DIYization of beer brewing comes in the middle of a paragraph:

Home brewing is part of a broad spectrum of DIY activities including amateur astronomy, backyard biodiesel brewing, experimental architecture, open-source 3-D printing, even urban farming. . . . Many of these pastimes can lead to new ideas, processes, and apparatus that might not otherwise exist.

Likewise with the DIYization of science: It will produce new ideas, solutions, etc. The Shangri-La Diet is an example.

Thanks to David Archer.

A few weeks ago I blogged about a leukemia doctor’s disapproval of self-experimentation (“you won’t learn anything and others won’t learn from it, either”). What I wrote was reposted at The Health Care Blog, where it elicited this comment (by “rbar”):

Sigh. Mr Roberts did it again, he simply does not (want to) understand that anecdotal evidence is of little value (let me give you an example: I self experiment with traffic signals; I noted that I can considerable cut down on travel times when ignoring red lights and stop signs; there are no drawbacks whatsoever, no one get hurts, and even my gas mileage/carbon footprint got better) .

Individuals who have similar questions as Mr. Roberts should look up the following key words, because they may understand why controlled studies are far superior to anecdotal evidence:
-placebo effect
-regression to the mean
-misattribution error [apparently rbar means error in determining the cause of a change]
-self limited conditions/natural fluctuation of chronic conditions
-and in terms of drawbacks of experimentation: primum non nocere, and also the fact that anecdotal evidence adds relatively little to humanity’s knowledge base

Does all that mean that patients should not be well informed, active and making suggestions to their treating physicians? Of course absolutely not. Being knowledgeable about one’s condition is different from self experimentation. Is that intellectually challenging?

One reply to this comment said we should be aggregating data across patients. “I believe Mr. Roberts is alluding to the power of aggregating real-world data across patients to generate insights into what may and may not work, not to giving undue weight to any single anecdotal case.” No, I was looking at it from the point of view of the self-experimenting patient. If you have a health problem, and you can measure it often (daily, weekly) you can find out what works faster than your doctor — often much faster. You can test many more possible solutions. This is what Richard Bernstein taught the whole world of diabetes, starting in the 1960s, when he pioneered home blood glucose testing. Apparently rbar also objects to that.

Rbar’s comment is dismissive (“Sigh”, “Is that intellectually challenging?”) and partly obscure (“ignoring stop signs and stoplights” — huh?).  Because patients who self-experiment may make “misattribution errors” they shouldn’t self-experiment? That’s like saying because people may make reasoning errors they shouldn’t reason.

The true meaning of rbar’s comment may be hidden in his statement that it’s okay for patients to “make suggestions to their treating physician.” Which shows who he thinks should be boss in the doctor-patient relationship. When a patient self-experiments, the doctor is no longer boss. Maybe rbar is a doctor. Maybe he feels threatened by self-experimentation. If so, I hope he’s right.

More A later reply to rbar put it well: ” Your list of possible pitfalls . . . is similar to lists I remember seeing back in graduate school in various research handbooks. I do not see how you go from the fact that these effects and errors are possible to the conclusion that the whole endeavor isn’t worthwhile.”

In a recent post I wondered what’s a good word to describe the next step in economic progress after specialization — when making/doing X is done by the general public (not as a job) instead of just by paid specialists (as a job).  For example, the introduction of cheap cameras allowed the general public, not just professional photographers, to take pictures. Personal science is an example of such a shift, of course. Thank you for your many suggestions, such as laitization, deguilding, promethization, and several more. The combination of Keimpe Wiersma’s suggestion (DIY) and wobbly’s suggestion (deguilding) led me to DIYing and DIYization.

DIYing, I learned, is an existing word with a different meaning (to do DIY). Although ordinary DIY (Home Depot) is associated with men, women appear to use DIYing far more than men and they use it to describe traditionally feminine activities (see this). For example, there is a blog DIYing To Be Domestic by a woman. This is irrelevant to whether I use it — it’s just interesting.

DIYization is much rarer. It appears in a 2005 essay called “Scandinavian Dreams: DIY, Democratisation and IKEA” where it refers not to a change in an activity but to a change in society — toward more DIY. IKEA, says the essayist, is an example of “the DIYization of society.”

DIYing is shorter. DIYization is more self-explanatory, less likely to be confused with dying, and makes clearer the connection with specialization. Not to mention it is more pompous — more Veblenesque. In the last chapter of The Theory of The Leisure Class, Veblen used long rare words to say that academics show off their uselessness using by using long rare words.

Can you help me? I am looking for a word — maybe a new word — to describe the transformation of an activity from (a) something done only by trained specialists, as part/all of their job to (b) something done by the general public, not as a job. For example:

• word processing software has made producing an attractive manuscript something that you no longer need hire a secretary to do — you can do it yourself.
• digital cameras and software have made producing high-end photographs something you no longer need a professional photographer to make.
• When I was a graduate student I hired a professional to make publication-quality figures for my scientific papers. Now I make them myself.

The transition I am talking about is part of a longer historical sequence that goes like this:

1. Hobby
2. Part-time job
3. Full-time job
4. Specialization (= division of labor)
5. [new word goes here]

The best word I can think of is deprofessionalization. Unfortunately that has been used with a different meaning. Amateurization doesn’t work because amateur often means hobbyist. Popularization doesn’t work because the status of the activity has changed — from something done as part of a job to something done not as a job. It is one of several ways a job can change:

• More efficient. New tools, materials, etc., make it possible to do the same job in a shorter period of time or at lower cost.
• Higher quality. New tools, etc., make it possible to do a better job.
• More exclusive (= higher barriers to entry). Something (e.g., licensing requirements) makes it harder for others to compete with you.
• Less exclusive. Something (e.g., the Internet) makes it easier for others to compete with you.
• ???. People no longer need to hire you or someone like you to do what you do. They do it themselves.

I care because personal science (science done to help oneself) is an example. For a long time, non-trivial science was done only by professional scientists. Now it is being done by non-professionals.

More What about publicization? Or is it too ugly? I looked up democratization as a possibility but found this under “democratization of photography”:”Serious photography has gone from being the preserve of the reasonably well off to something that just about anyone can take up with minimal expense”. That isn’t what I mean here — that the price of something comes down. Hoipolloization is too long. What about massification?

Still More It really is DIY, I hadn’t thought of that. That exactly conveys the transition from job to non-job. DIYing (or should it be DIYization?) has a nice ring to it, is very short, is not pompous, and would not need to be defined. I also like promethization, deguilding, democratization, and deprofessionalization.

Bryan Castañeda, who lives in Southern California, told me this:

The law firm I work at specializes in toxic torts. We represent people who have been occupationally exposed to chemicals and are now sick, dying, or dead. Most of our clients have been exposed to benzene and developed some kind of leukemia. We sponsor various leukemia charities, walks, and other events. [On January 21, 2012] in Woodland Hills, CA, the Leukemia & Lymphoma Society held its first annual Blood Cancer Conference. Although the speakers were mainly doctors, it was a conference meant for laymen. The chair was an oncologist from UCLA Medical Center.

After introductory remarks and the keynote speaker, there were several breakout sessions. I attended a session on acute lymphoblastic leukemia and acute myeloid leukemia. The speaker was [Dr. Ravi Bhatia,] a doctor specializing in leukemia from City of Hope in Duarte, CA. His talk was almost exclusively about new drugs and clinical trials. Very dry and dull. Things got more interesting during the question period. At one point, [Dr. Bhatia] told an attendee not to experiment on his own because “you won’t learn anything and others won’t learn from it, either.”

I would have liked to ask Dr. Bhatia three questions:

1. What’s the basis for this extreme claim (“you won’t learn anything and others won’t learn from it”)? Ben Williams, a psychology professor at UC San Diego, wrote a whole book (Surviving “Terminal” Cancer, 2002) about taking an active approach when faced with a very serious disease (in his case, brain cancer). Likewise, the website Patients Like Me is devoted to (among other things) learning from the experimentation of its members. Lots of forums related to various illnesses spread what one person learns to others. MedHelp has many forums devoted to sharing knowledge.

2. What’s so bad about “learning nothing”? Why should that outcome stop one from trying to learn? It doesn’t seem like a good enough reason.

3. Do you have a bias here? In other words, what do you want? Do you prefer that your patients not self= experiment? Doctors may prefer that their patients not experiment for their (the doctors’) own selfish reasons. When a patient self-experiments, it makes their doctor’s job more complicated and makes the doctor less important. If Dr. Bhatia is biased (he wants a certain outcome), it may bias his assessment of the evidence.

Late last year, Tara Grant (aka Primal Girl) considered the possibility that taking Vitamin D3 has the same effect as sunlight exposure. For example, taking Vitamin D3 at 7 pm is like getting sunlight at 7 pm. This idea — with my advice about how to sleep well (get an hour of sunlight first thing in the morning) ringing in her ears – led her to try to improve her sleep by taking Vitamin D3 first thing in the morning. It worked:

I usually took my supplements mid-afternoon. I vowed to take them first thing every morning. If I forgot, I would not take the Vitamin D at all that day. I tried it the next day and that night I slept like a rock. And the next night. And the next. Days I forgot and skipped the D3, I still slept great. That was the only change I made to my lifestyle and my sleep issues completely resolved.

I called this “a stunning discovery” and have blogged about it several times. I recently asked Tara for details and an update. She replied:

I am so happy to hear that 1) other people didn’t make the connection easily so I’m not a little slow and that 2) there seems to be something to my discovery. I’ve had a few comments from people who have said it has worked for them too. So let me answer your questions:

[What type of Vitamin D3 do you take?]

I take Trader Joe’s brand of Vitamin D3, which is a 1000 IU gelcap, in olive oil. 180 capsules for $4.99. Best deal I’ve found. I tried the tablets years ago and they had no affect on me (even on 8000 units a day plus tanning twice a week my blood levels were only at 58.)

[Has your sleep remained solid?]

My sleep HAS remained solid. I have not had ONE night of bad sleep since I started paying attention to when I was taking my Vitamin D.

[How much do you take?]

I was initially taking 10,000 units a day. After about 2 months, I cut that back to 5000 units to see if there was a difference. I did not wake up quite as rested, but I still slept soundly through the night. On days that I increase my dosage, I sleep better, deeper and feel more rested the following morning. I’ve tried this several times, even when I’ve been spending the night away from home, and it has made a difference. I have also tried eating sugar shortly before bedtime and caffeine in the afternoon (both things that would always make my sleep restless in the past) and I still sleep well!! I’ve also thrown exercising into the mix to see if it makes a difference but it doesn’t change the quality of my sleep – it just makes me tired earlier in the evening. I continue to change my dosage randomly and monitor the results.

The blog Science-Based Medicine ran a long critical comment about my recent Boing Boing piece (“Tonsillectomy Confidential: doctors ignore polio epidemics and high school biology”) followed by a back-and-forth (my reply, their reply to my reply, on and on) in the comments.

The exchange had three curious features.

1. In Tonsillectomy Confidential, I described how Rachael critically evaluated what a naturopath told her:

Rachael and her son went to see a naturopath that a neighbor had recommended. The naturopath was especially knowledgeable about nutrition and supplements. After an hour interview, she suggested Vitamin D3 (5000 IU/day), a multivitamin, Vitamin C (500 mg/day), and powdered larch bark. Rachael searched for research about these recommendations. She found many studies that suggested Vitamin D might help. Her son is a pale redhead and used sunblock a lot. It was easy to believe he wasn’t getting enough Vitamin D. Because Vitamin D won’t work properly without other vitamins (called co-factors), a multivitamin was a good idea [Rachael discovered during her research]. Rachael found studies that implied that a multivitamin was very unlikely to be very harmful. She found few relevant studies about Vitamin C. Maybe extreme claims about its benefits had scared off researchers — “Linus Pauling burned that bridge,” said Rachael. But she took the Vitamin C recommendation seriously because the naturopath had made other reasonable recommendations, the recommended dose was not large, Vitamin C is easily excreted in urine (in contrast to building up in the body), and Rachael had never heard of anyone having trouble at that dose. The naturopath had said that larch bark had reduced ear infections in children with chronic ear infections. A little bit of theory supported this, Rachael found, but overall the larch-bark research was “dodgy,” she said.

This was described by the Science-Based Medicine critic (Steven Novella) as “blatantly not evidence-based”.

2. In my first reply to the criticism, I wrote:

In other words, there is some evidence supporting the value of larch bark (“early laboratory evidence”) and some evidence (“a more recent study in mice”) not supporting the value of larch bark. Given this, to say “available scientific evidence does not support claims . . .” is false. An accurate statement is that some evidence does and some evidence doesn’t.

This got the following reply from a second critic (David Gorski):

No, Seth. Note two words Steve used, “in humans.” Steve was quite correct. If there is only a preliminary animal study, even if positive, that does not support the efficacy of larch bark in humans.

Apparently Gorski thinks animals (e.g., rats) and humans share no DNA. A few sentences later, contradicting himself, he notes that animal studies are used as screening tests.

3. Finally there was this, from Steven Novella:

It is fine to search for information yourself, and no one here is advocating “blind trust” in anyone. We are all activist skeptics. But it is folly to substitute one’s own opinion for that of experts who have spent years mastering a subject.

What a lovely motto for this blog: “It is folly to substitute one’s own opinion for that of experts who have spent years mastering the subject.” And, after all that study, think animals and humans share no DNA.

Peter A. Lawrence is a British biologist who has written several papers about problems with the way biology and other areas of science are now done. In this interview a year ago he summarizes his complaints:

• Scientific publication “has become a system of collecting counters for particular purposes – to get grants, to get tenure, etc. – rather than to communicate and illuminate findings to other people. The literature is, by and large, unreadable.” There is far too much counting of papers.
• “There’s a reward system for building up a large group, if you can, and it doesn’t really matter how many of your group fail, as long as one or two succeed. You can build your career on their success.” If you do something on your own it is viewed with suspicion.
• There is too much emphasis on counting citations. “If you work in a big crowded field, you’ll get many more citations. . . . This is independent of the quality of the work or whether you’ve contributed anything. [There is] enormous pressure on the journals to accept papers that will be cited a lot. And this is also having a corrupting effect. Journals will tend to take papers in medically-related disciplines, for example, that mention or relate to common genetic diseases. Journals from, say, the Cell group, will favor such papers when they’re submitted.”
• Grant writing takes too much time — e.g., 30-40% of your time. “There is an enormous increase in bureaucracy – form
  filling, targeting, assessment, evaluations. This has gone right through society, like the Black Death!”
• “Science is not like some kind of an army, with a large number of people who make the main steps forward together. You need to have individually creative people who are making breakthroughs – who make things different. But how do you find those people? I don’t think you want to have a situation in which only those who are competitive and tough can
  get to the top, and those who are reflective and retiring would be cast aside.” I’ve said something similar: Science is like single ants wandering around looking for food, not like a trail of ants to and from a food source. The trail of ants is engineering.

I agree. I would add that I think modern biology is far too invested in the idea that genes cause disease and that studying genes will help reduce human suffering. I think the historical record (the last 30 years) shows that this is not a promising line of work — but modern biologists cannot switch course.

What explains the depressing facts Lawrence points out? I think it is something deep and impossible to change: Science and job don’t mix well. The demands of any job and the demands of science are not very compatible. Jobs are about repetition. Science is the opposite. Jobs demand regular output. Science is unpredictable. However, jobs and science  overlap in terms of training: Both benefit from specialized knowledge. They also overlap in terms of resources: More resources (e.g., better tools) will usually help you do your job better, likewise with science. So we have two groups (insiders — professional scientists — and outsiders — everyone else). Both groups have big advantages and big disadvantages relative to the other. In the last 50 years, the insiders have been “winning” in the sense of doing better work. Their advantages of training and resources far outweighed the problems caused by the need for repetition and predictability. But now — as I try to show on this blog — outsiders are catching up and going ahead because the necessary training and tools have become much more widely available (e.g., tools have become much cheaper). And, as Lawrence emphasizes, professional science has gotten worse.