When health research is executed effectively, it can help fill the gaps of understanding between patients and their providers in order to inform decision making about treatments. As a research and advocacy fellow at CreakyJoints, I’ve come to see three foundations of good research:
Before research is conducted it must be reviewed by the Institutional Review Board (IRB), which evaluates the study on the grounds of ethics, fairness and quality. At CreakyJoints, I worked with Dr. Ben Nowell to organize protocol for a patient-generated study that would assess the relationship between pain, physical activity, fatigue and anxiety among patients with rheumatoid arthritis. Research is an expensive investment and it’s critical to design a clear study that is useful, feasible, unscrupulous and non-repetitive of other research. Having a clear plan and goal is the centerpiece of all research, and when planning a study, identifying its main purpose is of utmost importance.
After the study is reviewed and approved by the IRB, research can begin. Another project I contributed to was aimed at helping patients better understand joint replacement surgery through roundtable discussions with researchers and physicians. I assisted in the recruitment of patients to join in these discussions, but encountered difficultly in recruiting patients to participate in research. A survey conducted in November 2015 revealed that, among 800 participants from our CreakyJoints patient community, the number one reason people don’t participate in research is because it’s time consuming (CreakyJoints, 2015).
Once the research study has ended and the data has been collected, the findings can be shared with the public. Research is useless if people don’t know about it and can’t use it. I was given the role of developing the first CreakyJoints research newsletter to highlight the organization’s various research projects. The newsletter presents pertinent research findings and looks at why these findings are important. This information can guide future research studies and helps create a sense of transparency with the patient community.
At its most influential, research can influence the direction of health policy at the macro level — but it’s a delicate process. Each step relies on the step preceding it, and the quality of the research is incumbent on the quality of each step along the way.
—Jacqueline Beltejar for CreakyU
CreakyJoints. (2015). Rheumatoid Arthritis Patient Characteristics and Willingness to Participate in Research [Data file]. Retrieved from https://creakyjoints.org/wp-content/uploads/2015/11/ACR-report_CJ-member-willingness-to-participate-in-research.pdf