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A friend, recently diagnosed with cancer, was told by the hospital not to look for information on the internet. Other people I know I have been told the same.

If the ample information had been given, I could - perhaps - understand this advice.

When she asked for advice, this was sketchy and insufficient. So she did look on the internet. And of course found lots of useful information.

So, why would hospitals tell cancer patients not to seek information on the internet?

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    Are you sure they were told to not seek information on the internet or just to be very, very careful about what they find? The first would be wholly inappropriate, but the latter extremely good advice. – Carey Gregory Nov 1 '15 at 16:55
  • @Carey, yes, I am sure they were told to not seek information on the internet. Without any caveat. Like you, I think that careful browsing can be very useful. That is why I am puzzled at the hospital's advice. – finch Nov 1 '15 at 20:24
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Telling people not to look information up themselves is indeed very strange. Especially a recently diagnosed patient has lots of questions and won't be able to ask all of them at their appointments (questions coming up between appointments, questions from relatives and friends they want to answer, forgetting to ask things, etc.).

However, searching for information on health issues, especially cancer, on the internet can be problematic. There are a lot of websites around promising quick cures to all kinds of cancer, if only you eat right / use this product they are selling / stop doing a specific thing / etc. This can lead to patients doing things that they shouldn't, like discontinuing treatments. The internet site Science-based Medicine has a lot of articles in their cancer tag debunking such treatments and warning of the dangers.

A much more reasonable approach to this problem would be to provide a patient with trusted sources - pamphlets and such, of course, but also links to websites that can generally be trusted with information about medical treatment, but is accessible to laypeople, like the US National Institute for Cancer, or the Mayo Clinic. For patients a bit younger, the cancer.net website (which is a website by the the American Society of Clinical Oncology) has a list of resources for young adults. They also have information on how to evaluate information found on the internet

Health care professionals should encourage patients to discuss anything they read and have questions about with a professional. The reality of today is that, even if you tell patients they shouldn't look something up, they likely will. So it's important they know how to evaluate and deal with the information they find.

studies indicate that 16-64% of patients are using the internet to obtain health information. For the most part, patients perceive the online information to be reliable but maintain a healthy degree of skepticism. Studies objectively evaluating cancer information on the internet indicate that there is reasonable quality, although the language level of many sites is higher than that of the average American, which may limit the utility of the websites

Internet health resources and the cancer patient

If your friend wants to and has the energy to, I don't think it would be wrong to push back on this blanket policy.

Studies done regarding this subject find that Internet use makes patients more informed and helps them take a more active role in their health care decisions, which may prevent the feeling of helplessness many cancer patients experience.

Cancer patients’ Internet use for health information at wave one led them to want to be more active participants in medical decision making

Internet use leads cancer patients to be active health care consumers

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    You didn't answer the OP's question directly, but I don't know if it can be answered directly and I think you came as close as possible, so +1. – Carey Gregory Nov 8 '15 at 22:05
  • @CareyGregory thank you. Yes, that was my problem, too. In the end, we can't say why this hospital specifically is doing that, so I'm just guessing. It's certainly unrealistic in 2015 to think this would actually work, though,... – YviDe Nov 8 '15 at 22:07
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I agree with @YviDe. There are other possible reasons not mentioned, however.

On the internet, which is not tailored to individuals, there is no way to tell which category of a particular illness you fall into. People can read about the worst case scenario and not know how likely or unlikely it is to apply to them. No one wants a patient with cancer to suffer more than they are already destined to. Most likely, it is an attempt to protect the patient from unnecessary worry.

The flip side of that is that the medical care provider needs to be able to supply all the information the patient needs.

I do acknowledge that there is a lot of good information out there, and the best practice is probably to steer the patient to it specifically. But most often, people are not equipped to evaluate what they read on a medical site. A small but not uncommon example of this is the patient who reads about their medication's possible side effects on a website and decides to stop taking it (or worse yet, stop giving it to their child.) They don't know that the risk-to-benefit ratio should already have been taken into account by the prescribing physician.

A very good case in point is the whole anti-vaccine thing. That could not have happened without the internet.

Finally, physicians don't have the time to address all the quack claims that can be found on the internet about every illness. That might also be a reason to tell the patient to stay away from the internet. If you were a pediatrician, you could attest to how time-consuming it is to talk about vaccines with some parents, regardless of the fact that the person who published the study 1) falsified information, 2) was paid to do it, 3) lost his license to practice medicine because of his unethical behavior 4) no study has ever confirmed his findings and 5) there is copious information on the internet on the benefits of vaccinations.

The internet has not panned out to be the godsend it was first thought it would be.

  • While agreeing with you that this is definitely a risk, you just made me remember that I used to take medication that had "death" listed as a rare side effect in the patient information that came with the pills. It was actually the internet that made me less scared after that (by telling me just how rare that was). A lot of knowledge with no filter can definitely be a dangerous thing for people who are scared anyway, though. – YviDe Nov 8 '15 at 22:59
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    @YviDe - Precicely. And who, with cancer, is not afraid? – anongoodnurse Nov 8 '15 at 23:00
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Because of the sheer number of scams and misinformation.

A few quick searches will turn up tons of "natural" or "alternative" medicine that doesn't work (in fact, a lot of these scam sites manipulate search rankings to show up on the first few pages). In the context of cancer, these are dangerous for 2 reasons:

  • "Natural treatments", "alternatives", and "supplements" are largely exempt from common-sense safety standards and in some cases contain undisclosed allergens or ineffective/poisonous fraudulent substitutions (for a quick example see http://www.nytimes.com/2013/11/05/science/herbal-supplements-are-often-not-what-they-seem.html)
  • People may see these supplements or advice as a "miracle treatment" and stop taking their meds. Or the "natural alternative" could have dangerous biochemical interactions when taken with normal meds.

Asking questions on open forums ("polling the audience") can quickly get you a lot of misinformed, false, or bad advice just because many people don't know any better.

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