How to conduct and participate in research

What this article is about: This article provides a brief overview of resources on conducting and participating in research and links to resources where you can find more information and support.

Participating in research

www.clinicaltrials.gov

Most clinical researchers are required to list their studies on this site. You can search by your child’s condition or other key terms.

HHS About Research Participation guide

NIH Clinical Trials and you

Conducting research, e.g. “Looking stuff up”

UpToDate is a terrific 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.

How can you find these journal articles?  Start with PubMed.   Click on the link and put in the name of a top researcher that you may have heard of, your child’s condition, or a combination of search terms like “epilepsy” “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).  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.   =

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 straighforward 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.

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, it is a great way to get you thinking analytically.

Khan Academy You can learn almost anything for free.

MIT Opencourseware  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.