Making Health Research Relevant—and Less Feared—in the Mississippi Delta
STAT, April 18, 2018
PCORI advisory panel member Freddie White-Johnson, MPPA, writes about health and health care in the Mississippi Delta. White-Johnson wants to advance a patient-centered approach to research in an area where, she writes, many residents have “a lingering distrust of health research stemming from a long history of unethical practices directed against them.”
Through a Eugene Washington PCORI Engagement Award, White-Johnson and her team develop culturally sensitive approaches for patient-centered outcomes research (PCOR) in the Mississippi Delta. The project works to understand how residents view PCOR and to determine the most effective strategies for building trust and interest in health research.
Change Your Mind-Set, Reduce Your Chronic Pain
Scientific American, April 10, 2018
PCORI awardee Beth Darnall, PhD, outlines four steps that cognitive behavioral therapists use to train patients’ brains to "ratchet down pain signals, which enhances the effectiveness of medical interventions and helps patients reduce their need for doctors and pills."
Darnall and her team recently received a PCORI award to compare pain cognitive behavioral therapy with chronic pain self-management education. The study is testing which approach is better for reducing pain, increasing function, and reducing opioid use among patients with chronic pain.
Including People Living with MS in Research
Momentum Magazine, Spring 2018
This article highlights PCORI’s relationship with the National Multiple Sclerosis Society. PCORI has invested $64 million in 12 comparative clinical effectiveness research studies related to multiple sclerosis (MS), and the society has collaborated with us to provide patient perspectives on managing symptoms and making treatment choices. Cyndi Zagieboylo, President and CEO of the society, writes that PCORI-funded research is “relevant and important to people with MS.”
Pressing Questions: People with MS Can Help Guide Research Addressing the Disease
Momentum Magazine, Spring 2018
This article describes PCORI-funded studies that address three practical questions most patients with MS want answered: the first asks whether patients may safely discontinue treatment, the second asks about treatments for pain and depression for people with MS, and the third asks how to improve minority groups’ involvement in research.
The article quotes Diane E. Bild, MD, associate director of Clinical Effectiveness and Decision Science at PCORI, as saying, “Our focus is not on identifying new therapies, since others are doing that, but rather on gathering the information that will enable clinicians and individuals with a disease to choose the optimal approach from among the many options available.”
Technology and Patient-Centric Trials
PharmaVOICE, April 2018
This article focuses on the ways technology can enhance clinical trials so they become more patient centered. The article includes many industry leaders’ perspectives on patient-centered research, including that of Kristin Carman, PhD, Director of Public and Patient Engagement at PCORI. Carman highlights PCORnet, the National Patient-Centered Clinical Research Network.
“PCORnet unites patients, clinicians, health systems, health plans, and researchers from across the nation in collaborative partnerships to enable research to be conducted faster, less expensively, and on a larger scale than has been possible previously,” Carman says. “Dozens of PCORI projects make use of data from thousands of patients, combining and analyzing the data using sophisticated computer programs while protecting patient privacy and confidentiality.”
Stay tuned for more highlights of our work.