Patients’ and Community Leaders’ Perceptions Regarding Conducting Health Behavior Research in a Diverse, Urban Clinic Specializing in Rheumatic Diseases

• Published in: Progress in community health partnerships Vol. 6; no. 4; pp. 405 - 415
• Main Authors: Wallen, Gwenyth R, Middleton, Kimberly R, Miller-Davis, Claiborne, Tataw-Ayuketah, Gladys, Todaro, Alyssa, Rivera-Goba, Migdalia, Mittleman, Barbara B
• Format: Journal Article
• Language: English
• Published: United States Johns Hopkins University Press 2012
• Subjects: Adult; Aged; Community involvement; Community Participation - methods; Community-Based Participatory Research - organization & administration; Cultural differences; Disease control; Female; Health behavior; Health Behavior - ethnology; Health care; Health Services Accessibility - organization & administration; Health Services Research; Health Status Disparities; Humans; Leadership; Lupus; Male; Medical research; Middle Aged; Minority & ethnic groups; Outpatients; Pain; Patients; Perceptions; Professional-Patient Relations; Research design; Rheumatic diseases; Rheumatic Diseases - ethnology; Rheumatoid arthritis; Skin diseases; Studies; Trust; Urban Population
• ISSN: 1557-0541; 1557-055X; 1557-055X
• DOI: 10.1353/cpr.2012.0052

Disparities in the incidence, prevalence, severity, care, and outcomes for rheumatic diseases exist among racial and ethnic groups compared with White Americans. This paper describes a community-based participatory research (CBPR) approach engaging researchers, community leaders, and patients in purposeful dialogues related to the implementation of health behavior research in an urban rheumatic disease clinic. Seven focused discussions were led in either English or Spanish. Discussions were audiotaped and transcribed verbatim. Six community leaders and nine patients participated in the seven scheduled focused discussions. Transcripts uncovered five major themes that assisted with study design: trust, patient-provider relationship, study implementation suggestions, decreased functional capacity, and access to healthcare. Engaging community partners and patients in informal and formal discussions from early phases of research design through implementation, followed by systematic application of these insights, may serve to accelerate the potential for translation from findings into improved clinical practice and optimal outcomes.