I have been involved in clinical research for more than 10 years and over that time I’ve seen great progress in how we design and conduct studies to benefit patients. Originally, researchers who would contact me about their studies just wanted subjects to participate. They didn’t ask for input or feedback, and patients never knew the outcomes.
Today, patients are central partners in identifying what should be studied and evaluating the progress of clinical research as it proceeds. This trend really took off with the creation of PCORI, which not only requires meaningful engagement, but provides funding to make it possible. This helps researchers make their community partners a true part of the research team.
Through advisory panels and other feedback mechanisms, patient can give a voice to what’s going on. And that’s critical to good research. There are things about a disease or condition we can’t know or understand until we’ve experienced it firsthand. Patients give us so much perspective on what’s important and what’s needed to improve care.
Patients appreciate engagement because it feels personal and it lets them know someone cares. And we really do care.
Patients appreciate engagement because it feels personal and it lets them know someone cares. And we really do care. As a federal qualified community health center, our whole mission is to take care of patients regardless of their ability to pay. We want to give them the right care that fits their individual needs and is sensitive to the many challenges they face.
The positive changes I see go beyond research. Patients are connecting with each other. They’ve formed support communities with others who share their struggle and their desire for better health. It has given them hope and inspiration to better deal with their health problems because they know they’re not alone.
Participating in engaged research is empowering patients to be better advocates for their own health and to communicate and work better with their doctors and others clinicians. As care providers, we’re learning new ways to be proactive in helping our patients. In the coming years, the results of this research will help individuals be more active in their own health to live their best life.
Toya Burton, DC, MPH, is a chiropractor and health educator at Whatley Health Services, a private, nonprofit community health center in Tuscaloosa, Alabama. Her practice includes collaborations with primary care providers to help provide a more complete approach to patient care while using a variety of chiropractic techniques, music therapy, and physiotherapy to help improve patient outcomes. She has also served as a clinical investigator on a PCORI-funded study.