Background: PCORI engagement principles call for demonstration of cultural competency by patient-centered outcomes research (PCOR) team members. The culturally competent PCOR researcher must respect consumers’ and patients’ culture, beliefs, and ability to understand health information and put it to use in daily life (health literacy). There has been little systematic development and evaluation of curricula involving patients, and we know little about how to include patients and optimize their impact. In 2011, IOM called for a “cultural transformation” to improve pain care and specifically mentioned the need for enhanced continuing education and training for healthcare professionals to address stereotyping and biases that contribute to pain care disparities.
Proposed Solution to the Problem: The project team will work closely with the chronic pain community to identify approaches for including community stakeholders in cultural competency/health literacy training for researchers interested in engaging in PCOR, and the added value of using patients as teaching partners.
Objectives: Based on the premise that patients can be providers of knowledge, the project’s goal is to include chronic pain patients in the design and delivery of cultural competency/health literacy curriculum for PCOR researchers in an interprofessional setting. Long-term objectives are to improve the cultural competency/health literacy skills of PCOR researchers, and produce a curriculum that can be used by other groups in training and serve as a model for other PCOR training programs.
Activities: Update literature review on the role of patients/stakeholders in health professional education; conduct two focus groups of chronic pain patients, conduct four to eight in-depth interviews of researchers and one focus group of researchers; convene a working meeting of chronic pain patients, stakeholders, and cultural competency/health literacy experts to interpret the literature review and focus group findings and provide feedback.
Outcomes and Outputs (projected): A report will be prepared summarizing key principles of a cultural competency/health literacy curriculum for patient-centered outcomes researchers; recommended evaluation and assessment methods and approaches to measuring patient engagement; and successful models.
Patient and Stakeholder Engagement Plan: The project’s planning committee of representatives from chronic disease and pain patient advocacy organizations, stakeholders, and experts on cultural competency/health literacy will be expanded to include chronic pain sufferers. Pain Action Alliance to Implement a National Strategy (PAINS) Director, Myra Christopher, is a co-investigator and has worked with the project team to shape this proposed project and will continue to partner throughout with special attention on facilitating participation by chronic pain patient partners. Representing 133 million Americans with chronic disease and disability, National Health Council (NHC) will provide networking and communication opportunities with its >50 patient advocacy organization members. The University of Maryland’s PATIENTS program will help ensure that best practices in patient engagement are applied.
Project Collaborators: Collaborators include the University of Maryland School of Public Health, PAINS, National Health Council, University of Leicester, University of British Columbia, Stanford University, University of Amsterdam, University of Maryland’s PATIENTS program, the American Academy of Pain Management, the National Fibromyalgia and Chronic Pain Association, and the American Pain Society.
Project Resource: Final Summary Report