Why You Should Never Read Online Illness or Medication Forums, and Why You Should be Skeptical of Google Search Results as Well

The first thing many people seem to do when they get a diagnosis of a physical or a mental illness is to go to the internet and search on that illness. Patients who are prescribed medications do the same. Often the search results lead to internet forums. These forums consist of user-generated content that usually is not moderated or edited by any professional. Anyone can post on these forums. This seems reasonable, right? But in this article I’m going to tell you why, for the most part ,you should avoid reading these forums. And I will also tell you why you should be skeptical of Google search results regarding any illness.

When people read on forums about their illness or medication, they get scared. Many of the forum posts will say that your illness leads to awful and dire outcomes, and that the medications prescribed to you will make you depressed, addicted, or crazy.

For instance, I often treat tinnitus patients. Samplings of the forums that cover tinnitus suggest that most of the people who post on these forums are completely miserable and suffering terribly from their tinnitus.

So what’s the problem here? Isn’t this useful information? Can’t patients learn something interesting and helpful from these forums?

Unfortunately, Internet illness forums often present a distorted, grim, and negative impression of most illnesses and most medications. Why is this? The main reason is because of selection and sampling bias. The groups of people who post on illness forums are not a representative sample of people with a particular illness. Let’s use tinnitus as an example. If you read the tinnitus forums you would assume that everybody with tinnitus is anxious and depressed about it.

But actually, we know from research studies that roughly 20% to 40% of the population experience tinnitus symptoms from time to time. We also know that roughly 2% of people who have tinnitus symptoms suffer psychologically. So the data from research suggests that a small subset (2%) of people who have tinnitus symptoms suffer anxiety and depression as a result of their tinnitus. Most people (98%) with tinnitus symptoms do not suffer significantly or they have adapted over time and gotten over their suffering.

But the forums are full of posts from the people who suffer the most. People who don’t suffer don’t spend their time posting. And people who have overcome their suffering also don’t post. So reading the forums gives a tinnitus patient a distorted and scary view of the experience of tinnitus.

The other problem in reading internet information about illnesses is the way that Google Search ranks and orders search results. When you search on tinnitus, what you might not realize is that Google presents pages in order of popularity, not in order based on how accurate or scientific they are. Sites that are clicked on more frequently will rise up in the Google search results and sites that are clicked on less frequently will fall down. When you do a Google search people typically click on the most shocking and scary links. “Tinnitus caused by alien abduction” will get a lot of clicks even though it may represent a site run by a single person who claims to have been abducted by aliens. Thus the alien abduction tinnitus site will move up in the Google rankings.

Boring scientific sites fall down in the search rankings. That’s because they have scientific names that don’t encourage people to click on the links.

So how can patients get accurate information about their illness or about medication treatments?

One way is to search within scientific and medical sites. For instance, Medscape is an excellent website that offers medical articles about almost every illness. WebMD is another site more designed for lay people, which also offers good information. If you want to search scientific articles you can use the PubMed search engine which searches published research articles.

Let’s do a Google search on tinnitus. Overall, the 1st page of Google results is pretty representative of medical and scientific sites. But the 3rd listing titled “In the news”, is an article “Martin McGuinness tells of misery living with tinnitus,” from the Belfast Telegraph. Pretty grim, you think, misery!

But if you actually clicked through to the article you would get a very different impression because Martin McGuinness actually says that “it had a limited impact on day-to-day life and work and that family, friends and work colleagues were very supportive.… It does not limit me in a professional or personal capacity.” This is a much more positive view than suggested by the title and the Google link.

This is a great example of why the Internet is dangerous. The headline is what’s called click bait, a link that falsely represents the actual page, which is designed to attract people’s clicks.

Forums about medication are also problematic. Many psychiatric medications can have side effects. For most people these side effects are minimal or tolerable and are overbalanced by the benefits of the medications. For a minority of patients, the side effects are not minimal and these are the patients who are over-represented in most Internet medication forums. Also, on an Internet forum you never really know all of the medications the person is taking, the accurate dosages, as well as their underlying illness.

There is one more problem with reading about illnesses on the Internet. It’s one that particularly disturbs me. Many websites, even websites that purport to be objective, actually are selling something. They may be selling a supplement or vitamin, or an e-book or some other kind of program to treat an illness. Obviously, to increase sales, these commercial websites will paint a distorted negative picture of any illness or condition. They may also disparage other more traditional and scientifically validated treatments or drugs. In general, you should be skeptical of any information that comes from a website that sells products or services.

To review:

  1. Take Google search results with many grains of salt. Remember that Google orders search results by popularity not by accuracy.
  2. Beware of Internet illness and medication forums. By and large, they are populated with an unrepresentative sample of illness sufferers, the ones who suffer the most and cope the least well. Reading them will depress you and make you anxious.
  3. If you want to get information about your illness or potential treatments, utilize established and reputable medical and psychological information sites. An exhaustive list of best medical sites can be found at: the Consumer and Patient Health Information Site. Some of the good medical sites include MedscapeWebMD, and MayoClinic. Some of the best sites for mental health information include PsychCentral, NIMH , American Psychiatry Association, American Psychology Association .
  1. Finally, remember that a very large percentage of websites are actually selling something, and be skeptical of information from these sites.

In conclusion, suffering any illness or condition is unpleasant and sometimes scary. Don’t make it worse by consuming information on the Internet in a random way. Be skeptical and selective and remember that Google is not always your friend. Often a good physician or good psychologist can give you clear and balanced information.

 

Dr. Andrew Gottlieb is a clinical psychologist in Palo Alto, California. His practice serves the greater Silicon Valley area, including the towns of San Jose, Cupertino, Santa Clara, Sunnyvale, Mountain View, Los Altos, Menlo Park, San Carlos, Redwood City, Belmont, and San Mateo. Dr. Gottlieb specializes in treating anxiety, depression, relationship problems, OCD, and other difficulties using evidence-based Cognitive Behavioral Therapy (CBT). CBT is a modern no-drug therapy approach that is targeted, skill-based, and proven effective by many research studies. Visit his website at CambridgeTherapy.com or watch Dr. Gottlieb on YouTube. He can be reached by phone at (650) 324-2666 and email at: Dr. Gottlieb Email.

How Reporters Screw up Health and Medical Reporting (and How You Can Catch Them Doing So)

I’ve written before about common mistakes in interpreting medical research in my blog post How to Read Media Coverage of Scientific Research: Sorting out the Stupid Science from Smart Science. I recently read a very interesting post by Gary Schwitzer about the most common mistakes that journalists make when reporting health and medical findings.

The three mistakes that he discusses:

 1.      Absolute versus relative risk/benefit data

“Many stories use relative risk reduction or benefit estimates without providing  the absolute data. So, in other words, a drug is said to reduce the risk of hip fracture by 50% (relative risk reduction), without ever explaining that it’s a reduction from 2 fractures in 100 untreated women down to 1 fracture in 100 treated women. Yes, that’s 50%, but in order to understand the true scope of the potential benefit, people need to know that it’s only a 1% absolute risk reduction (and that all the other 99 who didn’t benefit still had to pay and still ran the risk of side effects).

2.      Association does not equal causation

A second key observation is that journalists often fail to explain the inherent limitations in observational studies – especially that they cannot establish cause and effect. They can point to a strong statistical association but they can’t prove that A causes B, or that if you do A you’ll be protected from B. But over and over we see news stories suggesting causal links. They use active verbs in inaccurately suggesting established benefits.

3.      How we discuss screening tests

The third recurring problem I see in health news stories involves screening tests. … “Screening,” I believe, should only be used to refer to looking for problems in people who don’t have signs or symptoms or a family history. So it’s like going into Yankee Stadium filled with 50,000 people about whom you know very little and looking for disease in all of them. … I have heard women with breast cancer argue, for example, that mammograms saved their lives because they were found to have cancer just as their mothers did. I think that using “screening” in this context distorts the discussion because such a woman was obviously at higher risk because of her family history. She’s not just one of the 50,000 in the general population in the stadium. There were special reasons to look more closely in her. There may not be reasons to look more closely in the 49,999 others.”

Let’s discuss each of these in a little bit more depth. The first mistake is probably the most common one, where statistically significant findings are not put into clinical perspective. Let me explain. Suppose we are looking at a drug that prevents a rare illness. The base rate of this illness, which we will call Catachexia is 4 in 10,000 people. The drug reduces this illness to one in 10,000 people, a 75% decrease. Sounds good, right?

Not so fast. Let me add a few facts to this hypothetical case. Let’s imagine that the drug costs $10,000 a year, and also has some bad side effects. So in order to reduce the incidence from four people to one person in ten thousand, 9996 people who would never develop this rare but serious illness must be treated. The cost of doing so would be $99,960,000! Plus those 9996 people would be unnecessarily exposed to side effects.

So which headline sounds better to you?

New Drug Prevents 75% of Catachexia Cases!

Or

New Drug Lowers the Prevalence of Catachexia Cases by Three People per 10,000, at a Cost of Almost $100 Million Dollars

The first headline reflects a reporting of the relative risk reduction, without cost data, and the second headline reflects the absolute risk reduction, and the costs. The second headline is the only one that should be reported but unfortunately the first headline is much more typical in science and medical reporting.

The second error where association or correlation does not equal causation is terribly common as well. The best example of this is all of the studies looking at the health effects of coffee. Almost every week we get a different study that claims either a health benefit of coffee or a negative health impact of coffee. These findings are typically reported in the active tense such as, “drinking coffee makes you smarter.”

So which headline sounds better to you?

Drinking Coffee Makes You Smarter

Or

Smarter People Drink More Coffee

Or

Scientists Find a Relatively Weak Association between Intelligence Levels and Coffee Consumption

Of course the first headline is the one that will get reported, even though the second headline is equally inaccurate. Only the third headline accurately reports the findings.

The theoretical problem with any correlational study of two different variables is that we never know, nor can we ever know, what intervening variables might be correlated with each. Let me give you a classic example. There is a high correlation between the consumption of ice cream in Iowa and the death rate in Mumbai, India. This sounds pretty disturbing. Maybe those people in Iowa should stop eating ice cream. But of course the intervening variable here is summer heat. When the temperature goes up in Iowa people eat more ice cream. And when the temperature goes up in India, people are more likely to die.

The only way that one could actually verify a correlational finding would be to do a follow-up study where you randomly assign people to either consume or not consume the substance or food that you wish to test. The problem with this is that you would have to get coffee drinkers to agree not to drink coffee and non-coffee drinkers to agree to drink coffee, for example, which might be very difficult. But if you can do this with coffee, chocolate, broccoli, exercise, etc. then at least you could demonstrate a real causal effect. (I’ve oversimplified some of the complexity of controlled random assignment studies, but my point stands.)

The final distortion which involves confusion about screening tests is also very common, and unfortunately, incredibly complex. The main point that Schwitzer is trying to make here though is simple; screening tests are only those tests which are applied to a general population which is not at high risk for any illness. Evaluating the usefulness of screening tests must be done in the context of a low risk population, because that is how most screening tests are used. Most people don’t get colon cancer, breast cancer, or prostate cancer, even over 50. If you use a screening test only with high-risk individuals then it’s not really a screening test.

There is the whole other issue with reporting on screening tests that I’m only going to briefly mention because it’s so complicated and so controversial. It’s that many screening tests may do as much harm as good. Recently there has been a lot of discussion of screening for cancer, especially prostate and breast cancer. The dilemma with screening tests is that once you find cancer you almost always are obligated to treat it because of medical malpractice issues and psychological issues (“Get that cancer out of me!”) The problem with this automatic treatment is that current screening doesn’t distinguish between fast-growing dangerous tumors and very slow growing indolent tumors. Thus we may apply treatments which have considerable side effects or even mortality to tumors that would never harm the person.

Another problem is that screening often misses the onset of fast-growing dangerous tumors because they begin to grow between the screening tests. The bottom line is that screening for breast cancer and prostate cancer may have relatively little impact on the only statistic that counts – the cancer death rate. If we had screening tests that could distinguish between relatively harmless tumors and dangerous tumors then screening might be more helpful, but that is not where we are yet.

One more headline test. Which headline do you prefer?

Screening for Prostate Cancer Leads to Detection and Cure of Prostate Cancer

Or

Screening for Prostate Cancer Leads to Impotence and Incontinence in Many Men Who Would Never Die from Prostate Cancer

The first headline is the one that will get reported even though the second headline is scientifically more accurate.

I suggest that every time you see a health or medicine headline that you rewrite it in a more accurate way after you read the article. Remember to use absolute differences rather than relative differences, to report association instead of causation, and add in the side effects and costs of any suggested treatment or screening test. This will give you practice in reading health and medical research accurately.

Also remember the most important rule, one small study does not mean anything. It’s actually quite humorous how the media will seize upon a study, even though the study was based on 20 people and hasn’t been replicated or repeated by anybody. They also typically fail to put into context the results of one study versus other studies of the same thing. A great example is eggs and type II diabetes. The same researcher, Luc Djousse, published a study in 2008 (link) that showed a strong relationship between the consumption of eggs and the occurrence of type II diabetes, but then in 2010 published another study finding absolutely no correlation whatsoever. Always be very skeptical, and most often you will be right.

I’m off to go make a nice vegetarian omelette…

 

Copyright © 2011 Andrew Gottlieb, Ph.D. /The Psychology Lounge/TPL Productions

Dr. Andrew Gottlieb is a clinical psychologist in Palo Alto, California. His practice serves the greater Silicon Valley area, including the towns of San Jose, Cupertino, Santa Clara, Sunnyvale, Mountain View, Los Altos, Menlo Park, San Carlos, Redwood City, Belmont, and San Mateo. Dr. Gottlieb specializes in treating anxiety, depression, relationship problems, OCD, and other difficulties using evidence-based Cognitive Behavioral Therapy (CBT). CBT is a modern no-drug therapy approach that is targeted, skill-based, and proven effective by many research studies. Visit his website at CambridgeTherapy.com or watch Dr. Gottlieb on YouTube. He can be reached by phone at (650) 324-2666 and email at: Dr. Gottlieb Email.

How to Read Media Coverage of Scientific Research: Sorting Out the Stupid Science from Smart Science

Reading today’s headlines I saw an interesting title, “New Alzheimer’s Gene Identified.”

I was intrigued. Discovering a gene that caused late onset Alzheimer’s would be a major scientific breakthrough, perhaps leading to effective new treatments. So I read the article carefully.

To summarize the findings, a United States research team looked at the entire genome of 2269 people who had late onset Alzheimer’s and 3107 people who did not. They were looking for differences in the genome.

In the people who had late onset Alzheimer’s, 9% had a variation in the gene MTHFD1L, which lives on chromosome 6. Of those who did not have late-onset Alzheimer’s 5% had this variant.

So is this an important finding? The article suggested it was. But I think this is a prime example of bad science reporting. For instance, they went on to say that this particular gene is involved with the metabolism of folate, which influences levels of homocysteine. It’s a known fact that levels of homocysteine can affect heart disease and Alzheimer’s. So is it the gene, or is it the level of homocysteine?

The main reason why I consider this an example of stupid science reporting is that the difference is trivial. Let me give you an example of a better way to report this. The researchers could have instead reported that among people with late-onset Alzheimer’s, 91% of them had no gene changes, and then among people without late onset Alzheimer’s 95% of them had normal genes. But this doesn’t sound very impressive, and calls into question whether measurement errors would account for the differences.

So this very expensive genome test yields absolutely no predictive value in terms of who will develop Alzheimer’s and who will not. There is a known genetic variant, called APOE, which lives on chromosome 19. Forty percent of those who develop late-onset Alzheimer’s have this gene, while only 25 to 30% of the general population has it. So even this gene, which has a much stronger association with Alzheimer’s, isn’t a particularly useful clinical test.

The other reason this is an example of stupid science is that basically this is a negative finding. To scan the entire human genome looking for differences between normal elderly people and elderly people with Alzheimer’s, and discover only a subtle and tiny difference, must’ve been a huge disappointment for the researchers. If I had been the journal editor reviewing this study, I doubt I would’ve published it. Imagine a similar study of an antidepressant, which found that in the antidepressant group, 9% of people got better, and in the placebo group 5% got better. I doubt this would get published.

Interestingly enough, the study hasn’t been published yet, but is being presented as a paper at the April 14 session of the American Academy of Neurology conference in Toronto. This is another clue to reading scientific research. If it hasn’t been published in a peer-reviewed scientific journal, be very skeptical of the research. Good research usually gets published in top journals, and research that is more dubious often is presented at conferences but never published. It’s much easier to get a paper accepted for a conference than in a science journal.

It’s also important when reading media coverage of scientific research to read beyond the headlines, and to look at the actual numbers that are being reported. If they are very small numbers, or very small differences, be very skeptical of whether they mean anything at all.

As quoted in the article, “While lots of genetic variants have been singled out as possible contributors to Alzheimer’s, the findings often can’t be replicated or repeated, leaving researchers unsure if the results are a coincidence or actually important,” said Dr. Ron Petersen, director of the Mayo Alzheimer’s disease research Center in Rochester, Minnesota.

So to summarize, to be a savvy consumer of media coverage of scientific research:

1. Be skeptical of media reports of scientific research that hasn’t been published in top scientific journals. Good research gets published in peer-reviewed journals, which means that other scientists skeptically read the article before it’s published.

2. Read below the headlines and look for actual numbers that are reported, and apply common sense to these numbers. If the differences are very small in absolute numbers, it often means that the research has very little clinical usefulness. Even if the differences are large in terms of percentages, this doesn’t necessarily mean that they are useful findings.

An example would be a finding that drinking a particular type of bourbon increases a very rare type of brain tumor from one in 2,000,00 to three in 2 million. If this was reported in percentage terms the headline would say drinking this bourbon raises the risk of brain tumor by 300%, which would definitely put me and many other people off from drinking bourbon. (By the way, this is a completely fictitious example.) But if you compare the risk to something that people do every day such as driving, and revealed the driving is 1000 times more risky than drinking this type of bourbon, it paints the research in a very different light.

3. Be very skeptical of research that has not been reproduced or replicated by other scientists. There’s a long history in science of findings that cannot be reproduced or replicated by other scientists, and therefore don’t hold up as valid research findings.

4. On the web, be very skeptical of research that’s presented on sites that sell products. Unfortunately a common strategy for selling products, particularly vitamin supplements, is to present pseudoscientific research that supports the use of the supplement. In general, any site that sells a product cannot be relied on for objective information about that product. It’s much better to go to primarily information sites like Web M.D., or the Mayo Clinic site, or one can go directly to the original scientific articles (in some cases), by using PubMed.

So be a smart consumer of science, so that you can tell the difference between smart science and stupid science.

Copyright © 2010 Andrew Gottlieb, Ph.D. /The Psychology Lounge/TPL Productions

Dr. Andrew Gottlieb is a clinical psychologist in Palo Alto, California. His practice serves the greater Silicon Valley area, including the towns of San Jose, Cupertino, Santa Clara, Sunnyvale, Mountain View, Los Altos, Menlo Park, San Carlos, Redwood City, Belmont, and San Mateo. Dr. Gottlieb specializes in treating anxiety, depression, relationship problems, OCD, and other difficulties using evidence-based Cognitive Behavioral Therapy (CBT). CBT is a modern no-drug therapy approach that is targeted, skill-based, and proven effective by many research studies. Visit his website at CambridgeTherapy.com or watch Dr. Gottlieb on YouTube. He can be reached by phone at (650) 324-2666 and email at: Dr. Gottlieb Email.