Our new contributing science writer, Alina Garbuzov, follows up on her previous post about the importance of the SCI Community educating themselves. Here, Alina outlines specific resources for where to get started, how to navigate the daunting landscape of scientific research on the internet, as well as some suggestions for keeping a balanced perspective through it all.
The internet can be a daunting place. Search boxes lead to a flood of links in a foreign language: many articles, many promises made for a cure by optimistic university press briefs. We’re all sick of extended family and acquaintances sending us another Science News or USA Today story about walking mice. How many times have scientists cured paralysis in rodents? Why does none of this work make it to the clinic?
I think this mixture of confusion, false hope and disappointment is a legitimate source of frustration and the reason so many of us turn away. In order to survive we choose to cope, instead of choosing to hope.
It all starts early in the hospital, when your doctor tells you that recovery lasts only six months. Or that you’re “complete.” Or that you’ll never walk again. Such definitive statements are meant to eliminate the possibility of change and set you on the path towards acceptance and adaptation.
I think this is wrong-headed and cuts people off from opportunity, advocacy, and information. Alternatively, you’ve come to learn that this attitude is necessary to deal with a world that is deeply uncomfortable with disability and is obsessed with inspirational walking miracles.
But if only the able-bodied are consuming science news and shaping the discussion around paralysis, how will the situation improve? Again, your voice is needed. It’s time for all of us to step up.
I would suggest you start with the following resources:
- Read the book, “Don’t Call it a Miracle” by Kate Willette, provided free by the Reeve Foundation.
- Check out this series of quick videos explaining the fundamentals from The Canadian Spinal Research Organization.
- Another resource is “Spinal Cord Injury: Hope Through Research” and other educational material put out by the NIH.
And, of course, watch this space. I will be covering a variety of SCI research topics in upcoming posts. My goal, like the goal of U2FP, is to bridge two worlds: to speak simultaneously from the perspective of a person with an SCI and a formally trained scientist working in the field of SCI research.
Though advocacy groups and the NIH provide great resources, overall you must be incredibly cautious to trust anything you read on the internet. You have to learn to avoid fraudulent, for-profit publications.
Scientific publishing is, unfortunately, in the midst of a transition period. Our old method of disseminating scientific information — publication in print journals — is all but dead. Online, top journals still remain behind a paywall and are accessed by scientists through the subscriptions of their academic institutions.
Individuals not affiliated with a university, searching for articles, either have to pay $30 per article or wade through a huge field of open access publications. The internet has led to a proliferation of journals. Unfortunately, many of them are just in the business of making money. They create a publication with an authoritative name and ask scientists to pay thousands of dollars for the privilege to publish.
But these journals don’t evaluate the studies using peer review. They accept any publication given a payment. And this is what you see when you do an internet search. You have to be very familiar with the field to know which journals are trustworthy and which are suspect.
To help your research, I want to give you some tools you can use to evaluate your sources:
- Understand Conflicts of Interest. Every journal has to report potential conflicts of interest. If you’re reading an article, the first thing to check is if the author has any funding or affiliations that may bias the information. Look for “Conflicts of Interests” or “Author Disclosure Statement” or similar section at the end of the article.
- Look Up Author Affiliation. Also check the affiliations of the authors for sources of bias. You should be less likely to trust somebody who is working for a company that sells widgets, publishing on the benefit of widgets. Next, look up the institutions the authors are affiliated with to make sure they’re well-known, legitimate sites of research.
- Weed Out Fraudulent Journals. If you are feeling suspicious, check the name of the journal against a database of “predatory journals” that can be found HERE.
- Search Open Access Journals. You may want to supplement your searches by using the directory of open access journals. This searchable database is exclusively for free, legitimate, and peer-reviewed publications. I use google to search this database, as their built-in search engine isn’t very good.
- Check Clinical Trial Details. When looking at clinical trials, pay close attention to the number of people in the study and make sure there is a real control group — individuals who got a placebo. Authors will often be associated with a company in clinical trials. This is normal as starting a company or working with one is a way to finance these expensive studies.
- Email the Author. If you come across a really interesting article that is behind a paywall, you can always email the corresponding author and ask for a copy. The authors are legally allowed to send you one and most scientists will be happy to share their work.
If you’re motivated to make a difference, join an advocacy group. Resources from U2FP include attending our Working 2 Walk conference, listening to our CureCast podcast, joining or following our Cure Advocacy Network campaigns (currently in Ohio and soon back to Wisconsin), and running or wheeling for Team U2FP.
And of course you can act locally: contact your representatives and look for organizations in your area.
Try to volunteer your time, lend your voice, and support your community. I know we all have to work incredibly hard just to gain access to many of the resources others take for granted: transportation, housing, career path, sports and recreation. If you have time and energy left, spend it on optimism. Not because you need a cure for paralysis to live your life. But because working towards a medical improvement to our quality of life benefits all of us, regardless of how successful or well-adjusted.
Just as you advocate for curb cuts and ramps, you can advocate to make sure that the science funded by the federal government will benefit you directly. The methods to do so exist. Choosing not to exercise that power is choosing silence and invisibility, a familiar plague of the disabled.
Alina Garbuzov, Contributing Writer | Postdoctoral Researcher
U2FP | Center of Neural Repair, Mark Tuszynski Lab at UCSD