My grandmother recently told me she wanted to invest her limited income in alkaline water. Her friend told her that it could change the pH of her body, and prevent and even cure cancers. No amount of information from me, the oncology nurse, was going to change her mind.
She read about it on the Internet: It must be true.
I am a technology junkie. I love being able to use the Internet to get information. The Internet saves me so much time when I need to research something for a patient; no more library trips, no more snail mail. I can find an answer immediately.
Quick, convenient access to information about any subject has changed the way we practice medicine and the way we live everyday life. Patients, too, take advantage of the Internet. But, as we all know, the freedom of the Internet also comes with a price: Faulty information is everywhere, too.
Knowing how to find the best information is important for all of us, but especially important for our patients, because, whether it’s on the Internet, over the phone, or in person, the unscrupulous take advantage of the vulnerable. Patients are vulnerable because they are justifiably frightened or even desperate to find hope.
How do we sort out the reputable from the disreputable on the Internet?
The National Cancer Institute offers the following guidelines.
A reputable online source should:
- Make it easy for you to identify who is the source of information
- Identify the source of financial support for the Website. Be aware. The source of funding impacts the content.
- .gov = federal funding
- .edu = educational organization funding
- .org = non-commercial funding
- .com = commercial funding
- Note the source of research. For example, the content should:
- Reference the medical journal from which statistics are taken
- Include the medical credentials of any healthcare “specialists”
- Have regularly updated information, with the date clearly documented on the site
- Clearly tell you how the information it asks about you will and will not be used, if such information is requested
- Have a way that users can contact the Website owner with concerns
As a side note, before participating in online discussions, first observe to assess who is moderating these discussions and what his or her qualifications are.
In my own practice, I have created a list of reputable sources, along with the above tips, and provide it to patients who want to do online research.
I also help them find what they’re looking for by showing them how to search on my own computer. Some reputable sources my patients really like include:
- CancerCare, which hosts many free interactive teleconferences, which are then archived and can be listened to on the Internet
- The American Cancer Society
- My LifeLine, a free, personalized Website for people with cancer that includes an online calendar for patients' friends and family to sign up to help with rides, meals, and other needs; links to reputable cancer information; places to post pictures and encouragement; and a way for patients to set up an area where people can donate money to the patient to help with expenses during treatment
The role for oncology nurses
When helping patients access good information, it is our job to help them understand how the information applies to them and their disease. Even if you guide your patients and their families to reputable sources, their level of health literacy might not enable them to accurately interpret what they read. Remember: Accurate information might still lead to inaccurate conclusions, which is another reason Internet research can be unsuccessful.
The Internet is not a substitute for quality education and communication from the cancer care team. To help arm you against bad information, TheONC has developed an entire Library of Resources you can access for yourself and your patients.
Be savvy about the information floating around online! That is our best defense against bad Internet research.