I've always asked questions. In the end, I'm the one who lives or dies, or, in my current state, is rendered a semi-invalid, by the information I am receiving. So yes, I ask questions. I only wish I had asked more questions about Prolia before agreeing to it.
Sometimes doctors tell me to "trust" them. I remind them as politely as I can that trust is earned, not given. (That usually is not received well. One doctor "fired" me for saying words to that effect. So I try my best to tread more carefully.)
I realize that doctors do not have the time to answer a lot of questions, so I'm often left pretty much in the dark, especially when different doctors suggest different approaches.
I recently asked a doctor questions about a drug and was asked, in reply, if I was "getting information from the internet." This was said in way that made me think that this doctor did not think much of the internet as a source of information.
But what am I to do, given the following?
1. Doctors' time is generally limited, so often the only information about a drug is from the manufacturer via their labeling. My experience has been that a search for information should not stop with the manufacturer's information. While this may be "approved" by the Food and Drug Administration (FDA), it may not tell the full story. (For instance, I never knew beforehand that starting Prolia, as a practical matter, amounted to a "life sentence.") So to fill in these gaps I must rely on other resources. Today, these resources are mostly on the internet.
2. Most local medical libraries are not open to the public, and in any event, traveling to them and using Index Medicus and taking notes and xeroxing pages in a library is time consuming and expensive. Plus I'm not in great shape (as noted elsewhere on these pages) so I appreciate the internet based systems now available that I can access from my home.
Here, in no particular order of importance are some of the places I've found information:
1. First and foremost of these internet resources is NCBI (the National Center for Biological Information) run by the Federal government as part of the system that includes the databases of the National Library of Medicine, carrying thousands of medical journals and other resources.
https://www.ncbi.nlm.nih.gov
When I find applicable articles here I read their abstracts (and the entire article if it is online) and, if possible, ask the doctor about about things I don't understand. Some journals are more useful and reliable than others, and here too a doctor can be helpful.
(Note: In the '80's and '90's I used NCBI's predecessor called "MEDLARS" (Medical Literature Analysis and Retrieval System) also operated by the Federal government. It had its own direct computer-based access via modem to National Library of Medicine. But this system has long since been replaced by the internet-based NCBI system above.)
2. Medical social media websites where people post their own experiences with various kinds of treatments offer information mostly from lay people. Without knowing more about those posting, it may be hard to evaluate this information, but, especially when you see enough posts about the same kinds of issues, this information could be valuable. I have listed some of these in this blog at: http://www.joansbackbonedisaster.com/2018/09/health-unlocked.html
3. Popular media. Many national newspapers and magazines that publish on the internet have excellent health and medical reporters on staff so that when stories appear about specific matters it can justify asking more questions. This is why I posted some articles from the New York Times about some surgical approaches to vertebral fractures like the ones I suffered following the Prolia delay. https://www.blogger.com/blogger.g?blogID=5152345338722870195#editor/target=post;postID=7271280824993248116;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=8;src=postname.
4. Websites of public interest organizations often have useful information. You have to know your organization, but many have knowledgeable experts who are careful about what they write. Public Citizen is one example. See posts about them elsewhere in this blog. I wish I'd paid more attention to them earlier.
5. Websites devoted to specific medical topics. Again, you need to evaluate them carefully, but I've featured a few I've found helpful ones on osteoporosis in this blog.
http://www.joansbackbonedisaster.com/2018/10/some-helpful-websites_14.html
6. Books, both popular and technical can offer some information. Popular books depend on the ability of the author to accurately interpret and convey scientific information. I've mentioned some that I've found helpful, but once again, I am not endorsing any of them or recommending following them to anyone. Here are a few I've been reading: http://www.joansbackbonedisaster.com/2018/11/some-books-im-reading.html
7. Miscellaneous sources that might not be as well vetted. These are still worth looking at because they can offer clues leading to finding information from more reliable sources.
So yes, Dear Doctor, I get some of my information from the internet. As noted, I've listed some resources for this elsewhere.
Please note that nothing here is an endorsement. I am not qualified to recommend any of these sources to anyone. Those with questions may just have to puzzle it out for themselves, or, if they are very lucky, find qualified experts to help them in this regard.