In the past, patients were often told to avoid doing their own internet research. That was because the internet really is a dumping ground for both information and misinformation. More and more, doctors are appreciating their patients’ efforts to participate in their healthcare. This is especially true when the patient uses internet research wisely.
Benefits of doing your own research:
You can decide if what is happening merits a trip to the doctor.
Often you can be put at ease when you discover your symptoms might feel awful, but you most likely have a cold. Sometimes, odd, but otherwise painless symptoms mean something more ominous is happening. For example, when my husband felt 3 hardened lymph nodes above his left collarbone (supraclavicular nodes), that specific symptom was said to indicate a 90% chance of metastatic lung cancer. It seemed improbable since he had never smoked and like most people, we thought of lung cancer as a smoker’s disease. Still, he made an appointment that saved his life.
Your doctor can’t keep up with all of the latest innovations in their field
Often, we expect our doctors to know everything. The medical field has become a complex place. Two years ago, my husband was ready to go to hospice. He could barely breathe; the cancer had so filled his lungs. He’d been following the experience of a blogger who was on a trial. Dan seemed to fit the profile of an ideal candidate for the drug. Finally, the FDA approved Tagrisso (a couple of months ahead of schedule). Dan asked his doctor to look into it. She did. She had him tested for the mutation the drug-treated and he was a match! Within two weeks of being on the drug, he was able to breathe again. He’s been on the drug ever since. His doctor appreciated his research and self-advocacy.
There are some drawbacks to internet research:
Sometimes the thing you think will be great—isn’t.
I’ve been using turmeric supplements as a way to ease the pain I experience from rheumatoid arthritis. Because it has worked well for me, we wondered if it would help with the pain Dan is in every day. We asked the palliative care specialist about it. She told us that even though turmeric is natural and over the counter, it isn’t something Dan should use. Turmeric is a natural blood thinner and Dan is a hemophiliac. It can also affect his blood counts that are already low because of the treatment he is on. We were glad we didn’t assume that an otherwise safe supplement is safe for him. Always check with your doctor about over the counter or “natural” supplements.
Internet Research isn’t a replacement for a doctor
No matter how empowered we can feel by the internet, there’s no replacement for a medical degree and years of experience. I often write posts for Quora, a user-input-based site. Every week, scared people ask me if their symptoms are indicative of cancer. I use the platform to encourage people to see their doctor when they are experiencing unusual symptoms. While most of these people don’t have cancer, there is often something happening with their health which needs to be addressed by a medical professional.
How you approach internet research is important
“Just the facts, Ma’am.”
Internet research has become second nature for most people, whether they are looking for a new car or the latest cancer treatments. It’s easy to pull up endless pages of information. But is the information factual? Is it experiential? Positive? Negative? These can be difficult questions to answer.
While the internet can be a valuable tool, it can also be a very frightening place, especially when you research cancer. Survival rates and statistics sound overwhelming when they’re not placed in the proper context. If you choose to research your symptoms or your diagnosis on the internet, use reputable websites. What makes a site, “reputable?”
User-Input Based Sites
Social Media and other user-input based sites such as forums have given everyone a platform. Because of that, there’s a lot more opinion on the internet than fact—especially when it comes to health issues. It’s difficult to wade through the endless sea of contradicting statements. Everyone has an opinion about cancer, cancer treatment, and what people should be doing. Random, anonymous people are very comfortable giving their opinions online. “Opinions,” is the keyword.
Many people use the Internet as their therapist. They post all their fears and the “what-ifs” online, where to the undiscerning eye, it can be frightening. While blogs and “cancer support” sites can be helpful for patients looking for support, they can also be a source of misinformation and confusion. The Internet tends to capture the negative. Because of this, use caution when reading user-input based sites. Keep in mind that the writer’s individual situation is different from yours.
Pseudoscience is rampant on the Internet. The Scrivener WordNet Dictionary defines pseudoscience as, “an activity resembling science but based on fallacious assumptions.”
Problems arise when patients or their loved ones believe pseudoscience and it contradicts what a health care provider recommends. This can cause a patient to delay a legitimate course of treatment. Meanwhile, cancer can spread.
This isn’t only a problem with cancer. I know of someone who didn’t follow their doctor’s advice in favor of another form of “treatment” for their diabetes. She went blind and ultimately died of a diabetic coma.
Rifts between family members often happen when they don’t agree on a treatment approach in light of a false promise made on the internet. The result is guilt, discord, and hurt feelings within the family.
What you need are facts pertaining to the cancer that you or your family is facing, rather than the cancer someone else has.
Using Trusted Resources
Health information, whether in print or online, should come from a trusted, credible source. Government agencies, hospitals, universities, medical journals, and books that provide evidence-based information are sources you can trust. Too often, other sources can provide misleading or incorrect information. If it makes claims that are too good to be true, remember—they usually are.
The National Cancer Institute gives the following advice on internet research:
Online sources of health information should make it easy for people to learn who is responsible for posting the information. They should make clear the original source of the information, along with the medical credentials of the people who prepare or review the posted material.
Use the following questions to determine the credibility of health information published online:
- Who manages this information? The person or group that has published health information online should be identified somewhere.
- Who is paying for the project, and what is their purpose? You should be able to find this information in the “About Us” section.
- What is the original source of the information that they have posted? If the information was originally published in a research journal or a book, they should say which one(s) so that you can find it.
- How is information reviewed before it gets posted? Most health information publications have someone with medical or research credentials (e.g., someone who has earned an M.D., D.O., or Ph.D.) review the information before it gets posted, to make sure it is correct.
- How current is the information? Online health information sources should show you when the information was posted or last reviewed.
- If they are asking for personal information, how will they use that information and how will they protect your privacy? This is very important. Do not share personal information until you understand the policies under which it will be used and you are comfortable with any risk involved in sharing your information online.
You can learn more about doing internet research as well as using other sources of information cancer, by checking out the National Cancer Institutes’s Website: http://www.cancer.gov/about-cancer/managing-care/using-trusted-resources.
Sometimes it’s good to take a “digital break.”
While internet research can be really helpful, there are also times when it’s good to take a digital break. That’s what I’m going to be doing in the month of January. I’ve noticed that I’m not getting as much writing done as I should be, so rather than spending time on email, social media, and other online activities; I will be writing and reconnecting with my goals for 2018. You will still see weekly blog posts on Facing Cancer with Grace, because I have already written them and will post them automatically, using a scheduler. Even though I may not respond to your comments right away, I will read them and appreciate them greatly. Since I won’t be sharing my posts to social media in January I would appreciate it if those of you who use social media would share my posts. Thank you!
What are YOUR thoughts?
I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!
In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com
Also, put your memories into words with The Memory Maker’s Journal.
I also blog at Heather Erickson Author/Writer/Speaker