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).
