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How to Research Your Child's Medical Condition Like a Pro

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Danielle and her son Charlie smiling
Danielle and her son Charlie.

I am often asked if having a background in medical research helped me in navigating my son’s complex, mysterious and rare medical condition. The answer is:  yes and no.

Before I became a full-time epilepsy activist/blogger/goddess/mom/public speaker/all-around glamorous diva extraordinaire, I worked in clinical research. For nine years, I was a research data analyst and database manager for adult pulmonary research at Johns Hopkins. I did statistics for presentations, conference posters, and peer-reviewed manuscripts and helped to plan and implement large-scale clinical research studies on subjects like pulmonary hypertension, asthma and cystic fibrosis. Before that, I worked for several years in women’s health. What that means is, when my son was diagnosed with infantile spasms, I knew absolutely nothing about pediatric neurology. In many ways, I was a total beginner just like many of you.

Other relevant stories:
What Are the 12 Types of Seizures
What to Do When Someone Has a Seizure
Can a Woman with Epilepsy Have a Baby 

On the other hand, my degrees in political science and public health combined with my experience in the health care field taught me a whole lot about where to find the good information about my son’s condition. I also know a lot about research “systems,” how papers get published, how research is funded and how to read a paper. I would like to share with you my “essentials,” or the sites that I check first when I am looking up research or general information about my son’s condition, or helping another family look for information. Using a few of my tricks, you can be good at this too.

Finding and obtaining articles:

UpToDate is hands-down my favorite resource for finding the latest, evidence-based information about any condition, written by doctors who really know their stuff. These articles summarize the state of the research on a particular topic, synthesizing all of the latest studies, in an easy-to-read format. The patient articles are free, but you can fairly inexpensively subscribe to the whole site with short-term access. The articles that you get with the subscription tend to be much more detailed and are at a higher reading level than the articles written for a patient or caregiver audience. Best of all, the articles provide lots of references to journal articles if you want to read about anything that was summarized in greater detail. Oh, how I love UpToDate. How can you find these journal articles? Start with PubMed. Click on this link and put my name (Boyce, Danielle) into the box at the top. It will send you to a list of a bunch of articles I co-authored. Once you stop yawning, you can try searching for something that actually interests you. Try putting in the name of a top researcher you may have heard of, your child’s condition, or a combination of search terms like “epilepsy” and “brain surgery” (although you might want to get more specific on those search terms, as it will give you way too many results to be helpful). PubMed is where I start when someone asks me, “Hey, Danielle, I read a news article that came out yesterday that says they found a genetic mutation that causes cortical dysplasia. Do you know what that is?” I will play around with those words and between Google and PubMed (Googling [study epilepsy “cortical dysplasia” genetic] might lead to the authors’ names, which is then entered into PubMed), I will get enough information to answer the question.

There are a lot of different tools in PubMed that can help you search like a pro. Just poke around that site for a while to get the help that you need. Once you have your list of results, click on the article title to get the abstract, or a quick overview of the paper. Many of the abstracts link to free full-text articles. Sometimes you have to dig around a bit to find the free links. If the article you want is not free, sometimes your doctor or social worker will print out a copy using their institution’s access privileges – just don’t ask too often, because this takes up a bit of their time. The organization called Partners in Information Access for the Public Health Workforce has published an essential list of other strategies for accessing medical literature. It never hurts to have a good relationship with your local librarian. Librarians love to help with research projects, and often have contacts at local medical libraries.

Side note: It also never hurts to try the Institute of Medicine (IOM). The IOM convenes expert panels and sometimes publishes really great documents jam-packed with good information and references. This includes recommendations for changes that should be made to improve care. I mention the recommendations because I often cite the recent IOM report on epilepsy in my advocacy efforts (“but, the IOM thinks we should do this, too!”).

Interpreting the articles:

Now that you have your articles, you may be thinking, “Holy cow, I don’t understand a word of this! What does this all mean for my child?” Have no fear! I can help you. The BMJ’s “How to read a paper” series will help to demystify what you are reading.

Note: It is very important to choose papers based on well-designed research studies, because the interpretation of results is much more straightforward and relevant if you do. Reputable sources mentioned above and your physician’s recommendation are the best place to start. 

That’s it! That’s all there is to it. Once you have mastered these basics, read on for some special topics.

Systematic reviews:

Cochrane Reviews take all of the published evidence on a topic and synthesize it using a fancy and totally legitimate methodology called a systematic review, and then draw conclusions for level of evidence for a particular intervention. Clear as mud, right? OK, let’s try an example. I am interested in learning about the evidence based on the published literature on brain surgery for epilepsy. I put “epilepsy brain surgery” into the search and obtained these results. The review explains how many studies were selected, how the analysis was performed, the limitations of the analysis, and the authors’ conclusions.

If you link out to the Cochrane Library, you can find a lot more details, including author information. Pretty awesome, huh? I guarantee that if you mention a relevant Cochrane Review to your child’s doctor, she or he will be very impressed and will also possibly fall off her or his chair. The only limitation for some of these reviews is the fact that rare conditions or interventions (like brain surgery for children with infantile spasms) occur too infrequently to be studied on a large scale, so there might not be many studies, and therefore there might not be enough evidence to give them a thorough summary.

Online courses:

Now that you have a taste for this, how about taking some free online courses to expand your knowledge base a little? You know, in your spare time! While this CDC course focuses on population-level (public health) studies, I think it is a great way to get you thinking analytically. Khan Academy is one of my favorite sites ever. You can learn almost anything for free. I can get lost on this site for hours the way I imagine other women get lost in the lip gloss aisle of Sephora. Conclusion: I may need to get out more. I just can’t help myself. This is a great site for getting caught up on basic science and biology, like organs and how they work. Sign up for free and then start with the Health and Science section of the site. For parents of kids with neurological issues, check out Biological Basis of Behavior: Early Methods of Studying the Brain.

MIT Opencourseware is one of those projects that restores my faith in humanity. There are hundreds of courses on almost every subject imaginable available to anyone to review, free! Like Khan Academy, this site is more for big picture topics related to the human body rather than individual diseases. If you search for broad terms like, “brain” you will be blown away.

These are just a few of the millions of resources online waiting to be discovered. There’s nothing stopping you from being the most educated person in the room about your child’s condition. After all, you are already the expert and you always were. Now you have the research to prove it.

Follow this journey on Special Needs Lifestyle

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 10, 2016
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