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Old Fri Jul 28, 2017, 09:32 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
I'm not surprised that many of us do our own research and I'm glad to hear that your doctors welcome well-informed patients.

Quite often, you can find yourself with too much information online, so you have to sift and filter what you find, to get to what's relevant to you. Examples: Old statistics can give you a more pessimistic view of your prognosis than state-of-the-art results, so pay attention to the dates of articles. Medical studies are more relevant when they involve large numbers of patients, so note the difference. Treatment recommendations for adults, and especially for seniors, may not apply to children and adolescents.

My wife's hematologist was glad to discuss any topic that we wanted to bring up, but still had to keep to an appointment schedule, so we learned to focus on the information that mattered most, including something we might have learned online. I've met patients who would print out long web pages to bring to appointments, expecting their doctor to evaluate them on the spot, and I suspect that it was not a good use of their or their doctor's time. If a doctor is wiling to exchange messages by email, that can be helpful when you have something to share or ask.

I agree with Cheryl C that you can spot suspicious websites, for example sites that are selling a product or sound way too good to be true. You just have to know to watch out for them. One trick I use is to look at the "Privacy Policy", "Terms of Use", and "Contact" links at the very bottom of a web page, which can reveal who runs the site. I used to be instantly suspicious of sites created by pharmaceutical companies, which have an incentive to bias the information in favor of their treatment drug, and it's good to be wary, but in fact I find that the major phamas give pretty fair information, so those sites can be useful. See dacogen.com for example.

Researching alternative treatments on your own is a tough challenge, but it's clear that many patients are looking for answers. It's definitely worth reviewing anything you find online with your doctor.
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