How to Find Good Cancer Information Online

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How to Find Good Cancer Information Online

How can you find good cancer information online?. Istockphoto.com/Stock Photo©Zerbor

How can you find good cancer information online? Articles that happen to be both reliable and readable? With the advent of the internet, nearly anyone can search for information—yet anyone can publish medical information as well. Scattered amidst credible information lie quacks and scams and well, information that is simply wrong.

Understanding the difference in this information is important if we listen to recent research about patient education; people who research their cancer tend to have a better quality of life, and even outcomes.  

In addition to understanding your cancer, the decision-making process between doctors and patients is changing. The phrase The phrase "shared decision making" refers to a setting in which this relationship is now a collaboration or partnership, rather than the paternalistic relationship between the two of the past.

So what do we know about the importance of doing your own research, and how can you find the best information possible online?

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Importance of Researching Your Cancer Online

Importance of finding cancer information online. Istockphoto.com/Stock Photo©OcusFocus

There are 4 important reasons—for starters—to research your cancer online.

Understanding and Awareness

The first is simply for awareness. Many of us read travel guides before we go on a trip, and navigating your way through cancer is no different.

Shared Decision Making

Another reason to learn about your cancer is that, as mentioned earlier, the relationship between physicians and patients has changed dramatically in recent years. Unlike the patient-physician relationship of the past, in which one made a recommendation and the other followed through, decisions are being made jointly. Is this good? Studies have found that patients who participate in shared decision making and are more engaged in their care, are more satisfied and confident.

Self-Advocacy and Empowerment

Taking an active role in your cancer care is important in maintaining a sense of empowerment. Cancer treatment is not just something that "happens to you" but something you actively choose. Think about your past. Have you felt more in control when you have a say in decisions you make? I realize this is a rhetorical question, but the point is that the patient of the present is literally directing her care rather than simply receiving that care.

Support

In addition to learning about your cancer online, becoming actively involved in the cancer community can be an excellent source of support. Sometimes these meetings allow people from all over the world to come together feeling as if they were immediate family. Instead of blood they share abnormal cells, but the bonding is similar, and the end result the same. Being less alone in a world with a lot of people.

Okay. Going online can be important for people with cancer. So how can you begin to decide if a site you land on is legitimate?

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Who Wrote the Article?

Who is the author?. Istockphoto.com/Stock Photo©nyul

One of the first questions to ask when evaluating medical information online is "Who wrote the article?" Check the byline of the article to see who authored the information. Is there a link to the author. to a bio, or to a medical review team?

What is the writer's background? Is she a health care professional? What degrees does she have? Or, in the absence of a listed author, is the article published by a website which is considered credible?

What is the writer's experience? Does she have experience in working with people just like you in person (as opposed to just in writing?) This isn't always necessary, but a history of clinical experience may imply she's familiar with both the type of questions and emotional pain you are experiencing in being diagnosed with cancer. 

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Who Reviewed the Article?

Was the article reviewed by a physician or medical review board?. Istockphoto.com/Stock Photo©byryo

In addition to the author, is the article reviewed by a health care professional or medical review board?

If the article is written by a health care professional, even an expert in a particular field, having a second set of eyes review the information can add depth and further experience to the quality.

This information is often listed near the top of the article. Take a moment to click on the review board or similar listing. In some cases, this won't be immediately obvious, so you may want to click on "about us" to learn more. What is the background of those who are being that second set of eyes?

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Who is the Information Written For? Who is the Audience?

Is the information written for patients or health care professionals?. Istockphoto.com/Stock Photo©AlexRaths

Who is the author writing for—in ​other words, who is the audience? Is it designed to be read by patients like you, or is it instead written for other health care professionals?  

Too much medical lingo can make an article read like a foreign language, but on the other hand, when you wish to understand as much as possible about your medical condition you will want information that goes further in depth.

Ideally, you will find articles that are readable that you can relate to but cover the topic thoroughly enough to give you answers and raise further questions to discuss with your oncology team.

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Check Dates and Updates on the Information

Check the date of publication and updates. Istockphoto.com/Stock Photo©Oliver Le Moal

Check the dates of publication and updates. When was the article published or last updated? 

Cancer information is changing rapidly, and sometimes even a few months can make a difference in the accuracy of information. For example, there were more medications approved for the treatment of lung cancer in the period from 2011 to 2015 than were approved in the 40 years preceding 2011.

The importance of checking on dates of an article was illustrated recently as I began researching a type of lung disease. I first reviewed recent studies in medical journals and then hunted online to see if the topic was covered. This is a type of lung disease in which significant advances have been made in the last two years.

One site (that would otherwise meet criteria for being a very credible site and was in the top three sites which came up on google) said there was no treatment for the disease. It had been updated last three years ago. I cringed to think how discouraging this would be to someone who was newly diagnosed with the disease. On a different site which did not have a publication date, a treatment was recommended which was ruled obsolete a few years ago - it actually increases the risk of death with the disease.

It can also be a good idea to check the dates of the sources of the article in some cases.  For example, if an article was updated in 2015 but the sources are from 1997 and 2003 this could be a concern, but not always. It could be that there simply has not been any research done on that topic in recent years.

Even when an article is recent, keep in mind that progress is being made in clinical trials for the treatment of cancer -- progress that may have yet to be published. This is a good sign.  It means progress is being made.

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What are the Sources for the Information?

Are the sources of the information cited?. Istockphoto.com/Stock Photo©galdzer

Check the end of the article to see the sources on which the article is based. (Sometimes sources can be found by clicking on hyperlinks within the article.)

What sources are used? For example, are the sources original studies or reviews published in peer-reviewed medical journals? While full articles in these journals are most often not available for the public to read, abstracts of many studies are available for review on pubmed.com.  

Instead of original research, are the sources instead from another topic review or opinion based source such as a blog, or from newspaper article such as the Sunday paper? Blogs and other articles listed under sources may provide some good information and are a great place to generate ideas to learn more, but it is important to check the references these sources use as well.

Are the sources hyperlinked? In other words, can you click on the source to get to the original abstract? This is not necessary, as you can copy and paste a source link into your browser to get to the original source, but does make it possible to more quickly scan the sources behind an article you are reading.

It's important to check the dates on sources and not just the dates and updates on the article itself, as an article is only as up to date as the studies on which it is based.

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Check the Length and the  Depth of Information

Evaluate the length and depth of information. Istockphoto.com/Stock Photo©Kalawin

If you are trying to learn as much as possible about your cancer, you will need more than a definition or brief overview.

How long is the article? Are there links to terms you don't understand?  

How can you learn more? Are there links you can follow that go into greater depth on the topic you are researching?

Take your time to explore the website you are reviewing -- not just the individual article -- to see what is available that pertains to your type of cancer.  You may want to bookmark articles for the future if they aren't something you wish to read that day. Don't overlook articles that talk about coping with your cancer as you hunt for medical information. The emotions that accompany a diagnosis of cancer can be as trying as the physical symptoms due to cancer and its treatments.

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General Tips on Finding Good Health Information

General tips on finding good online health information. Istockphoto.com/Stock Photo©wmitrmatr

In addition to checking out articles based on the criteria mentioned earlier, here are a few other tips.

  • Check the URL. Look for sites that end with .gov, .edu, and .org. There are some excellent .com sites, but check out the other factors mentioned earlier when evaluating these sites.Look for sites that end with .gov, .edu, and .org.  There are some excellent .com sites, but check out the other factors mentioned earlier when evaluating these sites.
  • Check to make sure that advertisements are clearly labeled as separate from the content of the article. In an ideal world, there would not be such ads, but understanding why these are present can be important. Unless it is a large government website, you may be more likely to find quality information written by writers who are paid to write, rather than those who write only as a hobby.

Here is a list of patient-friendly internet references for health

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Talking with Your Doctor About Online Information

Talking to your doctor about online cancer information. Istockphoto.com/Stock Photo©megaflopp

 How can you best talk to your doctor about information you find online and how does your doctor feel about this information?

There was a recent controversial and somewhat inflammatory quote posted on twitter: "Please don’t confuse your google search with my medical degree." It's important to note that opponents on both sides of this quote had some good points.

Let's start by talking about how your doctor feels about your online medical research.  In a perfect world, physicians would be thrilled to have every patient bring in the results of the research they have done on their condition. That said, speaking from inside the white coat I can share that some physicians see a large number of online scams and quacks that promise "miracle cures" and the like. A little initial hesitancy on the part of your doctor may reflect this experience.  

It's also important to consider that there are many nuances in cancer treatment plans. A specific treatment or idea may look good in black and white, but not be applicable to your specific situation. The need for "intuition" and integration of several factors ensure that physicians aren't going to be replaced by computers anywhere in the near future.

On the other side, it is very important to find a physician who is supportive of your personal research and takes the time to consider and review information you bring to the office. Choosing an oncologist is similar to important choices you make in other areas of your life -- for example, hiring a guide to climb a mountain -- it's a crucial choice and you should be comfortable with the doctor that will treat your disease and help you make difficult decisions.  With cancer, you want a doctor who will listen to you and work together to make sure you receive the best care possible.

If you are struggling with this issue, keep in mind that it is not your job to educate your physician about the importance of self-advocacy for people with cancer. It's your job as part of your cancer care team to learn as much as you can yourself in order to be an active participant in decisions made regarding your care.  

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Communicating About Your Cancer Online

Communicating about your cancer online. Istockphoto.com/Stock Photo©tonefotographia

I remember the days when the safety of shopping online was hotly debated. After all, couldn't someone hack the system? And what would happen if your personal information "got out?"

When it comes to your personal medical information, there are concerns as well. Could mentioning your condition online affect your employment down the line, or your ability to get insurance? Could someone follow your cancer "journey" online to determine when your home will be vacant, and "available" for theft?

These concerns need to be contrasted with the many advantages to sharing your personal cancer information online. During 2015 I met several people who are literally alive because of treatments or clinical trials which they only heard about as a result of being part of an active online lung cancer community; their oncologists were not aware of these treatments, or that they would fit the criteria to be treated with them.

What is the proper balance of these risks and benefits? As with anything you post online, it pays to learn how to be cautious and what you can do to protect yourself as you communicate about your cancer online. Check out these tips for sharing your cancer information online safely before you type and hit send.

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A Briefer on Interpreting Medical Studies

Understanding medical research. Istockphoto.com/Stock Photo©Tashatuvango

Since your cancer research may land you in the midst of medical journals, it's helpful to know what to look for, and to define a few terms commonly mentioned.

One of the first things to look for is the number of participants in the study. A large number is not always necessary -- and in fact, a new treatment may only have been studied on a handful of patients but still be considered a good treatment option. What the number does tell you, is how significant the data is. For example, a study done on 900 people which worked well for 50% is more significant than a study done on 2 people and worked for 50%.  In the case of the study done on only 2 people, there is much more likelihood that the positive effect in one person was due to chance alone, and not the new treatment. When there are more people included in a study, it lessons the odds that an improvement isn't simply a random occurrence.

Is the source a clinical study or a review article?  Clinical trials will evaluate a new treatment against old treatments (or a placebo) to see if the new treatment is superior. A review or meta-analysis is a different form of research, in which scientists compile and evaluate what has been tested in several trials. For example, a review may look at 19 studies in which a cancer drug was tested.

Is the study published in a peer-reviewed journal?  A peer-reviewed medical journal is one in which a team of scientists reviews and overlooks the results of the studies before they are published.

There are also several types of studies. A prospective study is one that looks at a concern or treatment and plans a study going forward in time. A retrospective study looks at a group of people - for example, a group of people with lung cancer - and looks back in time to see what was possibly different among the group.

The terminology used in clinical trials can be confusing, but these terms are commonly used in journal articles. A case study is a study looking at one individual, whereas most studies use groups of individuals. You may frequently note the phrase randomized controlled trial when it comes to cancer treatments. In these studies, individuals are randomly assigned to receive either an experimental treatment or traditional treatment (the control group.) This allows researchers to compare two treatments to see which one works better or if one has more side effects than the other. If the study is called a "double-blind" study, it means that neither the patients nor the physicians are aware of who is receiving the control drug vs the experimental drug.

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Internet Quacks and Scams

Recognizing internet scams and frauds. Istockphoto.com/Stock Photo©hypotekyfidler

Will your cancer really go away if you stare at a full moon for 10 minutes while you stand on one foot and chant the word “toothbrush?” Yes, that’s an extreme example, but from what I have seen and read online, not the worst.  

How can you know if the information you’ve found is credible? Here are a few red flags to watch for.

  • Does the article use terms such as "breakthrough," "never before," or "miracle cure?"
  • Does the article fail to list sources of medical studies but instead rely on testimonials?
  • Does the treatment sound "too good to be true?"

Learn more about internet quacks, bogus products, and false advertising in health care.

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Being an Empowered Patient - Health 2.0 and 3.0

Being an empowered patient online. Istockphoto.com/Stock Photo©IJderna

As a final note, consider becoming involved in a cancer community. This is a great opportunity to learn from other patients who are researching their disease as well.  

Medicine is changing. We are now in an era of health 2.0 (collaborating information) and entering health 3.0 (free flow of online medical information.) People are becoming increasingly engaged in their own treatment plans, something called "participatory medicine." If you or a loved one are living with cancer, learn how to be your own advocate with cancer.  We know it makes a difference in quality of life, and perhaps even, survival.

Sources:

Abel, G., Cronin, A., Earles, K., and S. Gray. Accessibility and Quality of Online Cancer-Related Clinical Trial Information for Naïve Searchers. Cancer Epidemiology Biomarkers and Prevention. 2015. 24(10):1629-31.

Egan, R. et al. The Cancer Stories Project: narrative of encounters with cancer in Aotearoa, New Zealand. Psychooncology. 2015 Jul 27. (Epub ahead of print).

Kane, H. et al. Implementing and evaluating shared decision making in oncology practice. CA A Cancer Journal for Clinicians. 2014. 64(6):377-88.

Keinki, C. et al. Information Needs of Cancer Patients and Perception of Impact of the Disease, of Self-Efficacy, and Locus of Control. Journal of Cancer Education. 2015 May 22. (Epub ahead of print).

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