2. Keep patients at the core.
We speak often of patient-centered care, but what about in research? The Patient-Centered Outcomes Research Institute (PCORI) involves patients, caregivers, and other individuals who historically have not been at the table when studies were designed.4
“In my community, folks are looking for answers, and PCORI lets them be a part of finding those answers,” Neely Williams, a pastor and a PCORI patient co-investigator said. “PCORI engages patients in meaningful, respectful ways that allow them to feel like not a subject but a part of the solution to the problem they're facing ...They gain more ownership. People who would never ask their doctor a question say, ‘I’m going to ask my doctor about this.’”
Elizabeth D. Cox, MD, PhD, a pediatric health services researcher at the University of Wisconsin-Madison, applauded this concept. “Working with stakeholders helped our project focus on research that solves the problems that matter most to patients and families,” Cox said. “The stakeholders helped revise our study procedures to better recruit and retain diverse participants...Another project engaged children with type 1 diabetes and their parents to tailor diabetes self-management resources to the unique needs of each child and family.”
3. Heed Howard Jones’ advice!
The great singer had it right: “Always asking questions. We’re always asking questions.” Why do some patients not implement our clinical recommendations? What limits some individuals from adhering with regular SMBG? What’s something in my clinic that bothers me, that’s inefficient, or can be improved? We must continually ask questions, and doggedly pursue ways to bring improved therapeutic agents and devices to market, but also enhanced ways to help patients access these advances.
I urge you to take action, by learning more! Connect with a colleague from “across the aisle,” whatever that potential divide may be. Discuss clinical trials with your patients. Share your experiences here, and let’s all recommit to closing those gaps a bit more, each day.
1. Woolf SH. The Meaning of Translational Research and Why It Matters. JAMA. 2008;299:211–213.
2. US Department of Health and Human Services, National Institutes of Health. National Center for Advancing Translational Sciences. https://ncats.nih.gov/index.php. Accessed April 28, 2018.
3. Altman Clinical and Translational Research Institute, University of California San Diego. https://actri.ucsd.edu/Pages/default.aspx. Accessed April 28, 2018.
4. Patient-Centered Outcomes Research Institute. www.pcori.org. Accessed April 28, 2018.