PAINS is working with Dr. Olivia Carter-Pokras at the University of Maryland on Patient Voice, a PCORI-funded project. This project seeks to include chronic pain patients in the design and delivery of cultural competency/health literacy curriculum for PCORI researchers in an inter-professional setting. Seeking opportunities to build relationships with researchers, Cindy Leyland, PAINS Project Director, attended the 2016 PCORI Annual Meeting.
Changing the Conversation about Health Research was the theme of the PCORI meeting, with plenary and break-out sessions building on that theme. The opening plenary session “put the voices of patients, caregivers and their advocates front and center in a discussion of why their needs and values matter in health research and decision making,” with the inspirational keynote address given by Stephanie Buxhoeveden, MSN, FNP-BC, MSCN, both a clinician and a patient with multiple sclerosis. Dr. Risa Lavizzo-Mourey presented the final plenary session sharing A New Vision for Health Research, Finding Common Ground among Stakeholders and emphasized the importance of bringing diverse stakeholders – including patients – to the table.
PAINS-KC hosted the inaugural focus group for the Patient Voice project on Wednesday, December 7, with a group of PAINS-KC Citizen Leaders responding to questions asking for their opinion about what researchers should know in order to understand, communicate with, and interact with people across cultures when conducting research with people who live with chronic pain. We are confident that this study will provide better understanding of the knowledge and skills in aspects of diverse culture that are needed by chronic pain researchers.