by Ben Nowell, MSW, Ph.D.
Anyone in science or academia will tell you that the primary goal of undertaking a Ph.D. is to learn how to become a research scientist. Having recently completed a Ph.D. myself, I now feel more excited, yet more daunted than ever about scientific research and its implications. But what exactly is research? And why should we in the CreakyJoints community care about it?
Research is a hunt for the truth. Broadly speaking, research is meant to make new discoveries that lead us to a greater understanding of the world with its many puzzles and challenges. In arthritis research, we seek to learn what will treat—and cure—disease. We try to find out who is most affected by which diseases and to identify the prevalence of different types of arthritis. In a 2013 article in the Journal of the American Academy of Dermatology, for example, Philip J. Mease and his colleagues discovered that psoriatic arthritis (PsA) goes under-diagnosed. In the study, they discovered that nearly one third of patients with psoriasis seen in dermatology centers also had PsA and that more than one third of the patients with PsA had not been diagnosed before. This is an interesting discovery with important implications. It means that a lot of people are not getting their arthritis diagnosed or, at least, not getting diagnosed early enough. It might also mean that whenever someone is diagnosed with psoriasis, they should also be tested for PsA. This affects the way physicians and other health providers think about treatment. Why are so many people with PsA overlooked? And how can we find out who they are to make sure that they get the help they need as early as possible?
Research is a process of asking questions like these—it’s about “seeking.” We have the French to thank for many great things: champagne, kissing, and…research. The word itself comes from Old French of the sixteenth century and simply meant “to search.” Our present day definition retains this original notion, but goes beyond to refer to an application of the scientific method. Research entails exhaustive investigation and experimentation: we come up with theories to explain how the world works; we collect information; we
look closely at that information; we interpret the information to see if it supports our theories; and then we do it all over again many times, sometimes scrapping a theory and starting over. This process is responsible for life-altering pharmaceutical discoveries—methotrexate, other DMARDs, and biologics—that have made a big difference to people with inflammatory arthritis.
Research is incremental. It takes time. A lot of time. Old findings lay the foundation for new findings. New findings require reassessment and confirmation. It always makes me nervous when people read about one study and accept the results of that study as absolute truth. A single study is more like a single strand of evidence in a legal trial. It’s a piece of information that helps us uncover the truth, but it doesn’t necessarily give us the complete picture. And in arthritis research today, we only have pieces of evidence—not the whole picture.
And that is why we as a community of people affected by arthritis need to care enough about research to take action. To care enough to become “citizen researchers.” If research means to “hunt for the truth,” then we need to start with the question, “What is true about me?” The more that people with arthritis speak up and share their own truth about arthritis, the faster we can make diagnoses and discover which treatments work best for which people. We can even take steps toward finding a cure.
The step you can take today is to complete the new CreakyJoints registration found on the website homepage or by calling the Global Healthy Living Foundation at (845) 348-0400 to receive a paper copy. It only takes 5 minutes, but is a big step in helping us to understand how you want to engage in research. Let’s get started. Together.