Do you remember when you discovered the internet? For me, it was in the mid-1990’s. I was working at a federal agency and voila – there it was – in all it’s Netscape glory. For some reason, I discovered Yahoo and to this day, it is my search engine of choice (even though I do use the term “Google it.”) Soon after I decided I needed to have my new-found power at home, so I became an AOL dial-up customer. Between me and my daughter, we were on-line so much that no one could get a call through to us. Remember busy signals? My whole out-of-state family could have been trying to contact me to let me know someone was sick or worse, and I would have had no idea!
It wasn’t long before I was searching the web for all sorts of things. I was about five years out from my stage one diagnosis and the internet was like the wild, wild west. WWW refers to the “world-wide web” but could have easily meant the “wild-wild web.” A whole new industry was born to create web sites and there were no (or few) regulations concerning the validity or truth of the information that was there for the reading. Early-on, I found the Mayo Clinic and WebMD sites, but for every site that was reputable, there were dozens that touted false information, false cures and sadly – false hope.
I was attending a breast cancer support group at the time and one woman brought in a stack of papers that included information on shark cartilage. Her adult son had a computer and decided to help his mother by not only finding the information, but printing it out for her. That stack was at least three inches thick and the group spent the entire meeting talking about shark cartilage. In fact, one woman admitted she took it regularly and bought from a mail-order supplier in California.
Of course, that was then and this is now, but have things really changed? Google “Metastatic Breast Cancer.” I did and on the first page of results, 21 out of 34 were ads. On the Yahoo search page, 11 out of 25 were ads with links to more ads. Do we – at any point regardless of the disease or illness, want to read ads as a way to get more information? Even worse, however, do we want to make decisions, based on paid advertising hiding behind similar fonts and appearance, presenting the illusions they are reputable medical web sites with reality based information? I realize the monstrosity that has become the internet must earn money for the developers (many of whom were millionaires before they finished college) and their companies but the internet has become the highway billboard of our time – always there, always on and always providing information. I believe it preys on people who may not be as internet savvy as they should be and fall victim to inaccurate and/or biased information.
Big pharma can afford to advertise their medications and they use the internet to push their latest and greatest FDA-approved drugs. In their effort to sell their product, they often place the most important information about things like side effects, who qualifies for the drug and their clinical trial information concerning outcomes and efficacy to the very small print at the end of of the site.
No one wants to be able to have an informed conversation with my oncologist more than me, but I learned a long time ago that the best way to do that is to find web sites that will give me unbiased and verified information, statistics based on that information (ideally clinical trials and research) and allows me to narrow my focus so I can make the most out of every oncologist appointment. There are many, many drugs available for women and men with stage 4 breast cancer, but not every drug is beneficial to every patient and some drugs, although they may be used at some point in treatment, might not be the first or even second medication prescribed as we move along the “mets-mile.” Although, the internet may be a tool I feel comfortable using, it’s not for everyone and many physicians discourage their patients from the self-diagnosis that can easily be made from reading and believing inaccurate information that is very easy to find on the Web. My oncologist has told me many, many times over the years to stay off the internet and she still gets very flustered when I start my conversation with her by saying “according to Dr. Google…” I’ve been with her a long time, and it’s become a bit of a joke between us – even though she is serious about me staying off the medical Web sites and even though we both know I won’t.
Even with all the wrong information on the Web, there are many reputable sites that can be very helpful to patients facing illness. I found two sites that are excellent guides about what to look for and how to find reliable health information on the internet. One, Finding Reliable Health Information Online is a Johns Hopkins’ site and can be found at tinyurl.com/qffjd4l. It has great suggestions, including links to other sites, including Reliable Health Information on The Internet: Cancer Supplement. There is also a link to information for caregivers. Another, Evaluating Health Information, from the National Institutes of Health’s Medline Plus health information tool can be found at tinyurl.com/n98lreb. It also has links to great articles about how to use the internet for medical information.
A simple guideline for finding and using medical information found on the internet is summed up in the following from Medline Plus:
“Millions of consumers get health information from magazines, TV or the Internet. Some of the information is reliable and up to date; some is not. How can you tell the good from the bad?
First, consider the source. If you use the Web, look for an “about us” page. Check to see who runs the site: Is it a branch of the government, a university, a health organization, a hospital or a business? Focus on quality. Does the site have an editorial board? Is the information reviewed before it is posted? Be skeptical. Things that sound too good to be true often are. You want current, unbiased information based on research.”
I believe as patients, we owe it to ourselves to be equal members of our medical team. When used correctly, the internet can be a great way to help us be informed patients who can make educated decisions about our care. Like anything else, however, there is the right way and the wrong way to use what we find. Next time you search for medical advice from Dr. Google – just make sure he or she has a license to use the internet to practice medicine and give what could ultimately life-altering advice. If you page Dr. Google and he or she calls you back – well, that’s another subject for another blog!
Don’t Stop Believing!
May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.