Tips for Finding Health Information Online
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
JULY 08, 2021
All of us depend more and more on the digital world. Although I cling to the habit of a paper Boston Globe daily, I am aware that most people get their news online or from other media sources. I am also aware that almost all exploration and research is now done online. I am old enough to remember going to the library and speaking with newly diagnosed cancer patients who wondered if they could access the hospital medical library in order to peruse medical journals. All anyone needs to do now is log on.
We all have different levels of need for information about our cancer. Some people try to read as much as possible while others are content to listen only to what their doctors tell them. There is no right or wrong here, but it is important to remember that it is impossible for us to learn as much as our doctors know and that not everything that we read is accurate or relevant to our own situation. It is a mistake to rely too much on Doctor Google. Having said that, there are many reliable sites, and we can choose to read as much or as little as we want.
Personal health literacy is defined as the degree to which individuals can find, understand, process and use information to better inform their own decisions and behaviors. More specifically, digital or e-health literacy is defined as the ability to look for, find and understand health information from electronic sources and apply the knowledge towards a health problem. This is the goal of our information-seeking: to better understand our own situations and use this knowledge to better care for ourselves and support necessary decision-making. Clearly, the better we understand our realities and our choices, the more control we feel and the more secure we can be with our care.
How, then, can we find the best, most trustworthy websites? There are literally thousands of medical websites available, and they are not equally sound. A good place to start is National Institutes of Health. A bonus there is MedlinePlus; it has dependable information about more than a thousand health topics and even has an online tutorial to learn more about how to evaluate health information you find online.
Here are some questions to consider before you read and trust medical information on a website:
- Who sponsors it? .gov means that it is hosted by a US government agency; .edu identifies an educational institution; .org usually means a nonprofit organization; .com identifies a commercial website. It is useful to understand who funds the site. Be suspect of any that include ads or popups.
- Who wrote the information and who reviewed it? Be skeptical about personal testimonials; personal stories can be helpful and uplifting, but there is a big difference between a story on a site that is based on science and one on a site that is trying to sell something.
- When was the information written? Things change rapidly in medicine, and something that was accurate five years ago may be much less so now.
- Is your privacy protected? If you are asked to share personal information, be very wary. Never share your social security number.
- Are miracle cures or preventions being touted? Beware.
- Is the site trying to sell something? Be wary.
Finally, on a slightly different tangent, be thoughtful about online message boards or unmonitored groups. People are free, of course, to post whatever they want, but there is no guarantee of their integrity or goal. I always warn my patients against going online and reading these messages in the middle of the night. You can think more clearly in the morning.