You may have noticed Hedonish has been quieter lately because as much as I love writing, my brain fog has made it really challenging over the last year. In lieu of the ability to write lengthy posts, I’ve found it easier to write shorter bits of info, so I’ve been sharing more on Twitter (this post was inspired by a twitter thread I wrote about finding free journal articles)—but recently Twitter has been heavily limiting who is seeing my posts, so I’m going to try to share more of my content here as well.
Why is access to research important?
As many of you know, I think an important form of self-care is being a good advocate for yourself and your healthcare. One of the best ways to be a good advocate is being well-informed, and when you have complex medical issues (or just something you’re not familiar with), medical journal articles can be an important way to get information and stay on top of current research. And while I’ve mainly used these resources to help navigate my laundry list of chronic illnesses, they’ve also been invaluable in locating information and research on sexual health topics too!
Unfortunately, most of us don’t have the $2,000 to $35,000 needed to access the medical and scientific research the journals keep behind paywalls. (What’s even more shocking is unlike traditional publishing, scientific publishing doesn’t actually pay the writers, researchers, or scientists for their work.) Anyways, while there are countless ways that money is a barrier to getting proper medical care, getting ahold of the information you need is one I can actually help with!
Disclaimer: I’m intentionally remaining ignorant as to the legality of these sources, however, I will point out the ones that make claims about being legal, and provide as much information as possible so you can make informed choices about which resources you’re comfortable using.
That said, I’m a chronically ill person with a rare disease. Access to medical journals and scientific research has allowed me to advocate for myself and learn about my disease in a way that both helps me navigate conversations with my health care providers and helps me better explain what’s going on with my health to the people in my life.
I think it’s absolutely wrong to allow money to be a barrier to good healthcare (even though it is in almost every possible way). Below are all resources I’ve come across in advocating for myself and my healthcare, so hopefully, it also helps some of you!
Listed below in the order I find it easiest to check them in are my go-to resources for locating free journal articles.
PubMed is a database that comprises more than 30 million citations/abstracts from MEDLINE, life science journals, and online books. Some of these citations link to full-text articles on PMC (see #2 below), while others are just abstract of a paper, journal, etc.
Even if PubMed doesn’t help you locate the full-text, it will help you located what articles out there you want to hunt down. Save the link to the PubMed page for later, we’ll need it for #7 on this list.
While PubMed is a database of citations and abstracts, PubMed Central (PMC) is is an electronic archive of free journal articles. I believe all the contents of PMC come up when you search PubMed, but you can also start here if you want.
Once you’ve located the article(s) you want to read, try putting the name of the article in quotations with the word PDF after. About half the time, this finds me the full-text free journal article.
For extra help, check out this guide to doing Boolean searches on Google. Boolean searches can help narrow things down to get you more specific results.
Unpaywall is a legal resource you can use to locate free, open-source, full-text journal articles. I’ll be honest, I find their website pretty confusing and difficult to navigate, but they have a really useful chrome extension.
Installing the Unpaywall chrome extension makes a small lock icon show on the right side of your screen when you look at PubMed. If the icon is green, you can click to view a free full-text version of that article. If Unpaywall doesn’t have the free medical journal article available, the icon will be gray.
#5: Your Public Library
Libraries are so underrated and if you don’t have a library card—GO GET ONE!
The vast majority of public libraries offer access to online services that often include free access to paid sites when you log in through their website, which sometimes includes access to the archives of journal articles. Some libraries require you to actually be in the library to use certain services, but generally, you can use many of them from home as well.
As a bonus, there are often also tons of other great resources, like ebooks, audiobooks, free movies you can watch, and my township offers free access to Lynda.com and Ancestry too.
ResearchGate is a social networking site for scientists and researchers to share papers, ask and answer questions, and find collaborators…and anyone can sign up for a free account (or you can use this search option without signing in)! If the author of the article you’re looking for has shared their work, you’ll be able to download it! You can even send a thank you note to the authors when you download an article—which you absolutely should do (because their work is appreciated, but also maybe they’ll continue to share their work).
@Sci_Hub is a wonderful resource started by Alexandra Elbakyan, or as this article calls her, Science’s Pirate Queen. I don’t know this person, but I’m very grateful for this resource she created—it theoretically may have helped me to find a resource I needed to show my oncologist that something she believed to be true about my disease had been disproven, and it’s information that will hopefully help my doctor’s other patients too.
In order to use Sci-Hub, you need to provide it with an exact reference to the paywalled paper—this is why I said to save the link back at the top of this article. The reference can be a URL, or a DOI, or title of the paper, or a scientific reference, but the URL seems to work well and is easy to locate.
Just a heads up though, the exact URL has changed at least once (I think), and I imagine might again in the future, if needed.
#8: Facebook (surprising, I know)
Shockingly, Facebook can actually be useful. At least sometimes. There’s a great FB group where people who have academic institutional access (i.e. students, professors, etc) help those who do not access research they need.
They also have a database of good other resources to check out, which you can view here.
• I haven’t tried it, but I’ve been told that if you email the article’s author(s) they’ll often send along the full-text. If they do, please thank them, and hopefully, they’ll be happy to do the same the next time someone reaches out for help.
• Ask your doctor if they could get it for you, as often they’re already paying the medical journal for access to the information
• Ask your cousin, someone else’s cousin, that person you just met who’s heading back to grad school, or literally anyone else with institutional access for their login to their college’s library (or just ask them if they can download it for you)
Last but not least…
I also tend to save research articles on Google Drive or the cloud of your choosing. Then you have easy access to it, and better yet, you can share access with other people. Working together with other patients is also a great way to save energy and meet people who can easily empathize with what you may be going through!
PLUS AS A BONUS… Next time a doctor dismisses something you tell them that you know is true, you’ll be able to pull it up on your phone to prove them wrong. Trust me, it’s extremely satisfying!!
I hope all this helps people access the information they need to get the best care possible.
I’m sure there are plenty more ideas and resources I haven’t used or thought of, so if you know of any please feel free to add them in the comments below!