Navigating the Waters of Online Health Information
Where do you go online for trusted health information? Do you restrict yourself to government agencies as the authorities on all things medical? Do you turn to the patient advocacy organizations? Do you trust everything you read in patient communities?
When I was a kid growing up (wow, that makes me sound old), there was no internet full of endless amounts of information. You had to go to the library if you wanted to thoroughly research a topic; and oftentimes, you needed to go to a several libraries to complete your work. You might even have your preference as to which library offered the best resources, which one was easiest to use, or which one made the process successful and rewarding.
With a grandmother who was a nurse, I had a curiosity about all things medical. It was not really a hypochondria, but an interest in how the body worked - or rather didn’t work sometimes. Fortunately for me, we had medical and health resources right at my fingertips at home found in two very large encyclopedic books. Each book was three to four inches thick and weighed several pounds. I took the books from the bookcase in our den often and read the material. For FUN.
Now, I read medical journal articles. I search for information regarding different treatment options currently available and those which may become available upon eventual approval by the FDA. I read blogs. I compare notes with other patients like myself, discussing various ways we cope with disease. I compare the information available from the many patient organizations focusing on MS. I share what I have experienced and what I learn along the way. I do all of this from the comfort of my own recliner.
I am a voracious consumer of digital health information online. No libraries needed.
Have you ever typed in “multiple sclerosis” into a Google search? I did today just out of curiosity and found that more than 30 million links or “hits” were offered. Theoretically 30 million resources of information which touch on MS in one way or another. Type in “multiple sclerosis symptoms” and get 11 million hits. “Multiple sclerosis treatment” returns 5 million hits.
How do you know where to turn when there are so many choices?
As a newly-diagnosed patient with MS, I turned to the National MS Society which provided me with some basic information. When I refer a new patient to specific material, it often comes from NMSS, from the MS Trust charity in the UK (whose clearly written material for patients and professionals I really enjoy), or from the Multiple Sclerosis International Federation. (In fact, I just got side-tracked for the past one and a half hours in reading material which was featured and linked on MSIF’s website.)
In the field of MS, my preferred government website is PubMed, however information can be hard to find and is scientific in nature. At PubMed, you will find abstracts to journal articles including results of every study funded by the National Institutes of Health (as well as studies funded by pharmaceutical companies and occasionally advocacy groups).
Of course, I peruse websites offered by the pharmaceutical companies who manufacture and promote products aimed at MS patients, knowing that their ultimate goal is to sell more product. But just because their goal is to sell product doesn’t mean that the information they offer is no good. In fact, it often is solid, basic information regarding the disease.
But would I visit their website if it didn’t have this basic information? Probably not. That would be like going to a library that didn’t have a set of encyclopedias at a minimum. No way. Would I visit a library which had information not available at other libraries? Yes, if that information were relevant to my needs. Absolutely, I would. This is where I expect pharmaceutical and device companies to excel in their online offerings. Companies should be the experts on their own products, and completed and ongoing research.
And in response to my fourth question above - Do you trust everything you read in patient communities? - my answer is a resounding NO! But that doesn’t mean that all information shared in patient communities is to be doubted. I have personally benefited from the stories and experience shared by my fellow MS bloggers.
One thing is vitally important, however, is that any information you seek should be verifiable. Look for references and links (I do!). Know that personal stories are just that, personal, while they may be perfectly valid. Know who is providing the information and what their ultimate goal might be.
To help digital consumers learn how to evaluate health information online, the National Library of Medicine has created Evaluating Internet Health Information: A Tutorial. I highly recommend that you take the tutorial and be more confident in your search for high quality health information in the digital world.
Read Digital Health Information in the Doctor's Office for an introduction to our ongoing discussion of digital health consumerism.